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National Guideline Centre (UK). Chronic Heart Failure in Adults: Diagnosis and Management. London: National Institute for Health and Care Excellence (NICE); 2018 Sep. (NICE Guideline, No. 106.)
9.1. Introduction
The update to the heart failure guideline includes topics where new evidence has emerged since the publication in 2010. A review of new evidence published after 2010 was carried out in order to determine whether any changes to current recommendations where likely to be required. The decision on which topics to include in the update of the guideline was made following consultation of the scope.
This section includes multidisciplinary team working,transition and continuity between different heart failure care settings and information and support needs. The following topics were not within the scope of the update. For more information refer to Appendix R, the 2003 guideline:
- Discharge planning
- Support groups
- Anxiety and depression
See See NICE’s guideline on depression in adults with a chronic physical health problem
9.2. Team working in the management of heart failure
9.2.1. Introduction
Heart failure is a complex disorder whose management involves a number of professional groups. Members of different professional groups contribute their experience and expertise to meet the complex needs of the patients. For the care to be optimised, the efforts of these professionals are best delivered through multi-disciplinary team (MDT) working. Multidisciplinary teams are well established to support people with heart failure in the UK.
A variety of models of care exist in heart failure and studies have documented the outcomes achieved by these different approaches. The role of the MDT in the care of patients with heart failure care was recognised in the NICE guidelines published in 2003. Since then has accumulated that has investigated the composition, competencies, needs for support, and the timing of different contributions of members of MDTs over a patient’s journey. This question sought to establish the competencies that ought to be present in a MDT to deliver optimal care for patients with heart failure as care of these patients increasingly moves into a community setting.
9.2.2. Review question: What competencies should be present in the multidisciplinary teams involved in the outpatient or community-based care of people with heart failure?
For full details see review protocol in Appendix A.
Table 97
PICO characteristics of review question.
9.2.3. Clinical evidence
A search was conducted for randomised trials comparing management involving multidisciplinary team care (MDT) with “usual care” without an MDT. Twenty two studies were included in the review6#2495,22,34,50,56,87,91,105,106,111,137,157,193,214,220,244,257,277,300,341,352. Interventions were heterogeneous, and were categorised into 4 main ‘strands’ based on the definitions in a recent Cochrane report326
- Home-based MDT: multidisciplinary teams from secondary care that included an aspect of caring for people in their home.
- MDT clinic: multidisciplinary teams forming an outpatient clinic
- Nurse-led or pharmacist-led clinic: enhanced outpatient service with MDT working
- Case-management: active management of high-risk people with case managers taking responsibility for caseloads working in an integrated care system.326
Given the heterogeneous nature of the interventions and populations in the included studies, a number of additional tables have been included in this evidence report to summarise the key features of the included studies. Table 98 shows the included studies listed alphabetically with their population risk and length of intervention stratification, as well as their intervention strand. Table 99 lists the included studies by strata and provides details of the methods for each study. Table 100 expands on the population risk stratification for each study. Table 101 gives more information on the composition of the MDT involved in the intervention arm of each study. Table 102 gives more information on the intervention delivered, and on the “usual care” arm.
Table 98
List of studies included in the review.
Table 99
Study details (arranged by strata).
Table 100
Papers according to population risk: risk strata and background rate of admission (IQR 0.6-1.6, values outside IQR are highlighted).
Table 101
Professions / Competencies delivering interventions (studies arranged by strata).
Table 102
Key activities of MDT, studies arranged by strata.
Evidence from the studies is summarised in the clinical evidence summaries below (Table 103-123). No meta-analysis was conducted due to the heterogeneity in study and intervention designs; a separate evidence summary is provided for each study. Studies are grouped by the strata identified in Table 99.
Table 103
Clinical evidence summary: Ledwidge 2003: Short MDT clinic (MDTc) versus Primary +/- secondary care for high risk HF.
Table 123
Clinical Evidence Summary: Varma 1999: Long Pharmacist-led clinic (MDT pharm) vs Primary care (1 control) >6 months for low risk HF.
9.2.3.1. Clinical evidence summary tables
9.2.3.1.1. High risk, Short, Home-based MDT
No studies were identified in this category.
9.2.3.1.2. High risk, Short, MDT clinic
Table 104
Clinical evidence summary: Rao 2007: Short MDT clinic (MDTc) versus Primary care for high risk HF.
9.2.3.1.3. High risk, Short, Nurse-led or pharmacist-led clinic
No studies were identified in this category.
9.2.3.1.4. High risk, Short, Case-management
No studies were identified in this category.
9.2.3.1.5. High risk, Mid-length, Home-based MDT
Table 105
Clinical evidence summary: PREFER (Brannstrom 2014): Mid-length Home-based MDT (MDThome) vs Primary +/- secondary care for high risk HF.
9.2.3.1.6. High risk, Mid-length, MDT clinic
Table 106
Clinical evidence summary: Ducharme 2005: Mid-length MDT clinic (MDTc) vs Primary / secondary care for high risk HF.
Table 107
Clinical evidence summary: Gonzalez-Guerrero 2014: Mid-length MDT clinic (MDTc) vs Primary care +/- Geriatric clinic for high risk HF.
Table 108
Clinical evidence summary: Nucifora 2006: Mid-length MDT clinic (MDTc) vs Primary care for high risk HF.
9.2.3.1.7. High risk, Mid-length, Nurse-led or pharmacist-led clinic
Table 109
Clinical evidence summary: Driscoll 2014: Nurse-led clinic (MDTn) vs Primary / secondary care for high risk HFREF.
Table 110
Clinical evidence summary: Ekman 1998: Mid-length Nurse-led clinic (MDTn) vs Primary care (1 control) 3-6 months for high risk HF.
9.2.3.1.8. High risk, Mid-length, Case-management
Table 111
Clinical Evidence Summary: J-HOMECARE (Tsuchihashi-Makaya 2013): Mid-length Case management (MDTcm) vs Cardiology clinic for high risk HF.
9.2.3.1.9. High risk, Long, Home-based MDT
Table 112
Clinical Evidence Summary: COACH intensive (Jaarsma 2008): Long Home based MDT (MDThome) vs Cardiology clinic in high risk HF.
9.2.3.2. High risk, Long, MDT clinic
Table 113
Clinical Evidence Summary: Auckland-HF (Doughty 2002): Long MDT clinic (MDTc) vs Primary +/- Secondary care in high risk HF.
Table 114
Clinical Evidence Summary: Capomolla 2002: Long MDT clinic (MDTc) vs Cardiology clinic in high risk HFREF.
Table 115
Clinical Evidence Summary: DEAL-HF (De la Porte 2007): Long MDT clinic (MDTc) vs Cardiology clinic for high risk HF.
Table 116
Clinical Evidence Summary: Del Sindaco 2007:Long MDT clinic (MDTc) vs Primary / secondary care for high risk HF.
Table 117
Clinical Evidence Summary: PRICE (Atienza 2004): Long MDT clinic (MDTc) vs Cardiology for high risk HF.
9.2.3.2.1. High risk. Long, Nurse-led or pharmacist-led clinic
Table 118
Clinical Evidence Summary: COACH basic (Jaarsma 2008): Long Nurse-led clinic (MDTn) vs Cardiology clinic in high risk HF.
Table 119
Clinical Evidence Summary: OPTIMAL (Mejhert 2004): Long Nurse-led clinic (MDTn) vs Primary care for high risk HF.
9.2.3.2.2. High risk, Long, Case Management
Table 120
Clinical Evidence Summary: Berger 2010: Long Case-management (MDTcm) vs Primary +/- secondary care (1/2 control), for >6 months high risk HFREF.
9.2.3.2.3. Low risk, Short
No studies were identified in these categories.
9.2.3.2.4. Low risk, Mid-length
No studies were identified in these categories.
9.2.3.2.5. Low risk, Long, Home-based MDT
No studies were identified in this category.
9.2.3.2.6. Low risk, Long, MDT clinic
Table 121
Clinical Evidence Summary: Northstar (Schou 2013): Extended follow-up in MDT clinic (MDTc) vs Primary care (1 control) >6 months for low risk HF (stable HFREF).
9.2.3.2.7. Low risk, Long, Nurse-led or pharmacist-led clinic
Table 122
Clinical Evidence Summary: Agvall 2013: Long Nurse-led clinic (MDTcm) vs Primary care (1 control), >6 months for low-risk HFREF.
9.2.3.3. Low risk, Long, Case-management
Table 124
Clinical Evidence Summary: HICMann (Peters-Klimm 2010): Non-specialist case management (MDTcm) vs Primary care (1 control) >6 months for HFREF.
Table 125
Clinical Evidence Summary: Martensson 2005: Non-specialist case management (MDTcm) vs Primary care (1 control) > 6 months for high risk HF.
9.2.4. Economic evidence
Published literature
Five health economic studies were identified with the relevant comparison and have been included in this review.22,223,274,272,290 To maintain consistency with the clinical review these have also been reported according to the clinical categories specified above. One health economic study was identified for the high risk, mid-length intervention, MDT clinic category; 2 health economic studies were identified for the high risk, long intervention, MDT clinic category; 1 health economic study was identified for the high risk, long intervention, nurse led MDT; and 1 health economic study was identified for the high risk, long intervention, case management MDT. No economic evaluations were identified for the remaining categories. These are summarised in the health economic evidence profiles below (Table 126, Table 127, Table 128 and Table 129) and the health economic evidence tables in Appendix G.
Table 126
Health economic evidence profile: Home-based MDT clinic (mid-length intervention) vs usual care in high risk patients.
Table 127
Health economic evidence profile: MDT clinic (long intervention) vs usual care in high risk patients.
Table 128
Health economic evidence profile: Home-based MDT (long intervention) vs nurse led MDT clinic (long intervention) vs usual care in high risk patients.
Table 129
Health economic evidence profile: MDT (long intervention - case-management) vs usual care (primary +/- secondary) in high risk patients.
One economic evaluation was selectively excluded due to the availability of more applicable evidence. This is listed in appendix J, with reasons for exclusion given.
See also the health economic study selection flow chart in Appendix D.
9.2.5. Evidence statements
Clinical
Overall 22 studies were included in the review. No meta-analysis was conducted due to the heterogeneous nature of the interventions and populations in the included studies. The studies were grouped into strata based on the population risk level (high, low) and the length of the intervention (long, mid, short), and were also categorised into one of four intervention types (home-based MDT, MDT clinic, nurse-led or pharmacist-led clinic, or case management).
High risk Short
Home-based MDT
No studies were identified in this category.
MDT clinic
This category included two studies with high risk populations exposed to a short MDT clinic intervention. For the outcome of all-cause hospitalisations, the evidence was inconsistent, with one study (n=98) suggesting a clinically important reduction and the other (n=112) suggesting a clinically important increase (moderate to low quality evidence). The evidence from both studies did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality.One of the studies (n=112) showed a clinically important increase in prescribing of ACE inhibitors and beta-blockers (high to moderate quality evidence).
Nurse-led or pharmacist-led clinic
No studies were identified in this category.
Case-management
No studies were identified in this category.
High risk, Mid-length
Home-based MDT
This category included one study (n=72) with a high risk population exposed to a mid-length home-based MDT intervention. The evidence showed a clinically important reduction in hospitalisations (high quality evidence) and a clinically important improvement in quality of life (very low quality evidence). Mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality.
MDT clinic
This category included three studies with high risk populations exposed to mid-length MDT clinic interventions. The evidence on hospitalisations was low to very low quality and inconsistent, with two studies (n=7117 and n=230) suggesting a clinically important reduction, and the third study (n=200) suggesting no clinical difference. Evidence on mortality was also low to very low quality and did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality.. The third study also provided evidence on quality of life and heart failure medication prescribing and adherence. Very low quality evidence suggested no clinically important difference in quality of life. The evidence on medications was moderate to very low quality and inconsistent, with evidence of a clinically important decrease in prescription of beta-blockers, but no clinical difference in prescribing of ACE inhibitors or taking prescribed medication. Most of the evidence had very wide confidence intervals around the effect estimates.
Nurse-led or pharmacist-led clinic
This category included 2 studies (n=25 and n=158) with high risk populations exposed to a mid-length nurse-led clinic intervention. For the outcome of hospitalisations, low to very low quality evidence suggested a clinically important reduction. Very low quality evidence suggested mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality.. The smaller study provided low quality evidence for quality of life which suggested no clinically important difference. Very low quality evidence from the same study also suggested a clinically important increase in prescribing of optimal beta-blocker doses. Evidence on all of the outcomes except for beta-blocker prescribing had very wide confidence intervals around the effect estimates. The larger study provided low quality evidence for NYHA class change and prescribing of ACE-inhibitors which showed no clinical difference in the former and a clinical benefit for the latter.
Case management
This category included one study (n=161) with a high risk population exposed to a mid-length case management intervention. Very low quality evidence showed a clinically important decrease in hospitalisations. Very low quality evidence on mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality.. Low to very low quality evidence on quality of life suggested no clinically important difference.
High risk, Long
Home-based MDT
This category included one study (n=683) with a high risk population exposed to a long home-based MDT intervention. Low quality evidence suggested a clinically important increase in hospitalisations . Mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality.
MDT clinic
This category included five studies (n=338, n=173, n=240, n=234, n=197) with high risk populations exposed to a long MDT clinic intervention. Moderate to very low quality evidence from the five studies consistently showed a clinically important reduction in hospitalisations or days in hospital. High to very low quality evidence from four of the studies also suggested a clinically important reduction in mortality or cardiac mortality in two studies,no clear effect in two studies and the fifth study suggested a clinically important increase.
Low to very low quality evidence on quality of life reported in three of the studies (n=220, n=210, n=197) suggested a clinically important benefit. Moderate to low quality evidence on prescribing of beta-blockers from two studies (n=153, n=210) suggested a clinically important benefit. Evidence on ACE inhibitor prescribing was inconsistent, with two studies (n=210, n=154, moderate to low quality) suggesting a clinically important benefit and a third (n=153, low quality) suggesting no clinical difference.
Nurse-led or pharmacist-led clinic
This category included two studies (n=679 and n=208) with high risk populations exposed to a long nurse-led clinic intervention. Evidence for hospitalisations was of moderate to low quality and showed no clinical difference in the former study but a clinical benefit for the latter. The evidence for mortality was of low quality and did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality. One study (n=208) also reported quality of life and medication prescription. The evidence for quality of life was of low quality and showed no clinical difference. Evidence for prescribed ACE-inhibitors and beta-blockers were of low to very low quality and showed a clinically important reduction for both outcomes.
Case management
One study (n=186) with a high risk population undergoing a long case-management programme was included in this category. Low to very low quality evidence suggested a clinically important reduction in hospitalisations, deaths and prescription of beta-blockers. Moderate quality evidence suggested no difference in the prescription of ACE-inhibitors or ARB. Quality of life was not reported.
Low risk, Short
No studies were identified in these categories.
Low risk, Mid-length
No studies were identified in these categories.
Low risk, Long
Home-based MDT
No studies were identified in this category.
MDT clinic
One study (n=920) offering an extended follow-up in an MDT clinic for low risk stable HFREF patients was included in this category. High quality evidence showed a clinically important reduction in admissions. Low quality evidence for mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality. The evidence for the remaining outcomes quality of life, prescribed ACE-inhibitors, prescribed beta-blockers, and three adverse events (serum creatinine increase, hyperkalaemia and hypotension) all showed no clinical difference and were of moderate to very low quality.
Nurse-led clinic
This category included one study (n=160) with a long nurse-led clinic for low risk HFREF patients. Low to very low quality evidence showed a clinically important reduction in the number of admissions. Mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality .Low quality evidence also showed a clinically important increase in prescribed ACE-inhibitors or ARB. No difference was found for the outcomes of prescribed beta-blockers and renal function serum creatinine, which were of moderate to low quality. Quality of life was not reported.
Pharmacist-led clinic
One study (n=83) with a long, pharmacist-led clinic for a low risk HF population was included in this category. The evidence for admissions was of very low quality and showed a clinical reduction for both. Mortality did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality .Very low quality evidence for quality of life also showed a clinical benefit for the intervention. Self-reported taking of prescribed medication showed no clinical difference and was of low quality. An automated measure of taking prescribed medication, however, showed a clinically important increase; the evidence of which was of very low quality.
Case management
Two studies with a long, non-specialist case management approach for a low risk HF population were included in this category (n=149 and n=190). The evidence for mortality was of very low quality and did not demonstrate a clear effect with the confidence interval ranging from a decrease and increase in all-cause mortality. One study (n=149) reported two medication outcomes: prescribed ACE-inhibitors at target dose and prescribed beta-blocker at target dose, both of which were of very low quality. The former outcome showed clinical harm for case management while the latter showed no difference. The second study (n=190) also reported a few other outcomes such as hospitalisations, which was of very low quality showing clinical harm for case management. This study also reported quality of life using the Kansas City Cardiomyopathy Questionnaire (very low quality showing clinical benefit for case management) and the SF-36 mental and physical components (low quality evidence demonstrating no difference for both). This study also reported prescribed double therapy of ACEI/ARB and B-blocker which was of low quality evidence showing no difference between the interventions.
Economic
- One cost-utility analysis found that mid-length intervention MDT clinic dominates (more effective and less costly) usual care in people with heart failure who are high risk. This was assessed as partially applicable with potentially serious limitations.
- One cost-consequence analysis found that a long intervention MDT clinic was less costly with mixed effects on health outcomes (hospitalisations: RR 0.67, mortality: RR 1.80, quality of life (MLWHFQ) MD 6.60 lower, prescribed ACEi: RR 0.97, prescribed BB: RR 1.62) compared to usual care in people with heart failure that are high risk. This was assessed as partially applicable with potentially serious limitations.
- One cost-effectiveness analysis found that a long intervention MDT clinic was less costly and more effective (saves £4,042 per death and/or heart failure-related admission avoided; saves £2,155 per all-cause admission avoided) compared to usual care in people with heart failure that are high risk. This was assessed as partially applicable with potentially serious limitations.
- One economic evaluation found that a long intervention, basic MDT dominates (more effective and less costly) both usual care and a long intervention, intensive MDT in people with heart failure who are high risk. This was assessed as partially applicable with potentially serious limitations.
- One economic evaluation found that a long intervention, case-management MDT is cost effective (ICER: £3,072 per QALY gained) compared to usual care. This was assessed as partially applicable with potentially serious limitations.
9.2.6. Recommendations and link to evidence
| Recommendations | The core specialist heart failure multidisciplinary team (MDT) should work in collaboration with the primary care team, and should include:
The specialist heart failure MDT should directly involve, or refer people to, other services, including rehabilitation services, and tertiary and palliative care, as needed. [2018] The specialist heart failure MDT should:
|
| Relative values of different outcomes | The critical outcomes were identified as all-cause hospitalisations, mortality and quality of life. Important outcomes included medicine optimisation (including the proportion of people prescribed medication and the proportion taking the medication as prescribed). Also important were outcomes felt by the committee to indicate potential adverse events from over-treatment: renal failure, hyperkalaemia and hypotension. Patient and carer preferences, and dying in preferred place of death for palliative care patients, were also considered important, but these outcomes were not reported by any study. |
| Quality of the clinical evidence | Twenty two studies (23 comparisons) were identified. The studies were stratified into 2 categories of heart failure risk (high risk and low risk) and 3 lengths of intervention duration (3 months or less, between 3 and 6 months and over 6 months). The population risk (high versus low) was based on the existing recommendations for people who may benefit more from an MDT. The included those with a new diagnosis; requiring medication titration and/or surgical procedure; recent deterioration and severe and/or unresponsive disease. In the current review 14 of the 17 studies in the high risk category selected patients on the basis of recent deterioration, with only 1 selecting new patients, 1 specifically targeting patients requiring medication titration, and 1 selecting on the basis of severe HF with a need for palliation. Population risk in the studies was also described by the average number of all-cause hospital admissions per person per year in the control arms, where this could be calculated. There were only 3 studies that were 3 months or less; and all studies included in the low risk category were over 6 months long. The studies had a heterogeneous mix of populations, interventions and standards of usual care. The studies also ranged in scale from 25 participants followed for 6 months to 920 participants followed for an average of 4 years. Due to the heterogeneity, meta-analysis of the studies was not considered appropriate. The quality was variable, with the main reasons for downgrading due to risk of bias being a lack of detail about randomisation/allocation concealment and imprecision due to small study size. Many of the studies had small numbers of patients or events, with large confidence intervals around the effect estimates ranging from a clinically important harm to a clinically important benefit. Quality of life was downgraded for performance bias in all studies, as it was not possible to blind participants. There was also concern that some larger studies stated intent to measure quality of life in the study protocol, but with limited or no results presented, suggesting selective reporting. The committee considered that overall, the evidence was of low quality, often imprecise, and noted that even the direction of effect was inconsistent between outcomes and between studies. The numbers of hospitalisation and deaths in many of the studies was less than might be expected, and that this may represent selection bias towards healthier patients in these trials. Therefore, there may be problems generalising the evidence to the current heart failure population in the UK. In addition, many of the studies were over twenty years old, and most not in the context of current NHS practice, further restricting their applicability. The committee considered whether further research in this area would improve recommendations in this area. While the current evaluation is hampered by heterogeneous small trials, there were some larger trials such as COACH and NorthStar, which have given some moderate and high quality findings. It was not felt to be worthwhile to prioritise research that aimed to add to or improve on these at the current time. |
| Trade-off between clinical benefits and harms | There was substantial heterogeneity in the study designs, patient populations, types of intervention and lengths of follow-up, and the evidence was of poor quality for many of the outcomes. Because of this, the committee generally found it challenging to identify which MDT interventions and team compositions were likely to be of the greatest benefit, and for whom. In patients in the high risk categories identified in the last guideline, there was some evidence that the involvement of the MDT may lead to the prescription of more appropriate medication, decrease number of hospitalisations and improve quality of life. It was discussed that in high risk patients, while most interventions did decrease hospitalisations, there were increased deaths in some of these studies. The possibility was raised that the avoidance of hospitalisation could have increased the risk of mortality, but as the evidence on mortality was very imprecise and based on small numbers, it was felt this was likely to be a chance finding. There seemed to be evidence of a general effect of extra hours of contact being associated with improved outcomes in high risk patients, with some caveats. First, there seems to be a ceiling effect: although some shorter interventions delivered improvement, extended follow-up (over years) in a clinic offered little benefit; and delivering 40 hours of contact gave only the same benefit of 20 hours of contact. Secondly, expertise appeared to count, as contact with a primary care nurse delivering a heart-failure intervention without specialist expertise in heart failure had no benefit. The committee agreed that the overall evidence supported the general approach that the MDT be used to stabilise and optimise patients. There was no convincing evidence for substantial changes to the previous recommendation regarding which patients should be cared for by the specialist multidisciplinary heart failure team, though the committee agreed by consensus on some clarifications to the previous recommendation text. These included a referral to the MDT should be considered when there was a need to optimise medication or consider specialist options in medication, and implantation of device therapy. The committee discussed specifying the competencies that should be present in the specialist multidisciplinary heart failure team. Clearly, a lead physician with specialist expertise in heart failure was critical, and this will usually be a consultant cardiologist, but there may be areas where other consultants would also be suitable, such as a consultant in elderly care, . The committee noted that the main professionals involved in delivering or coordinating interventions in the included studies were cardiovascular or heart failure specialist nurses. Based on this evidence, the committee agreed that a nursing element was needed, and emphasised that a specialist heart failure nursing competency was necessary; as the evidence suggested that it was not possible to get the same clinical improvements from generalist nurses. There was also evidence that the presence of prescribing expertise (whether by a nurse prescriber or pharmacist) can improve the prescription of some medications, and the committee agreed that the MDT should also include specific prescribing expertise. The committee also noted that there was evidence that involvement of the patient’s primary care team was shown to be beneficial, and this was in accordance with the negative experiences of some of the committee members when primary care was not involved in the management plans. It was felt that the multidisciplinary specialist HF team members provide input to the management of patients with heart failure defined above in collaboration with their primary care team. In this way, the primary care team can help facilitate communication and collaboration between healthcare professionals wherever the patient’s care is being delivered across different settings. This may include a GP who has completed a course for special interest registration |
| Trade-off between net clinical effects and costs | Five relevant economic evaluations were included in this review which compared an MDT to usual care. All of these studies were assessed as partially applicable with potentially serious or very serious limitations. One economic evaluation assessed high risk patients receiving a mid-length (3-6 month) home-based MDT clinic including a cardiologist, heart failure nurse, palliative care physician, palliative care nurse, physiotherapist and occupational therapist. This was based on the PREFER trial by Brannstrom et al. 2014 included in the clinical review. This within-trial cost-utility analysis found that this multidisciplinary approach is more effective and less costly, and therefore dominated (more effective, less costly) usual care. This study suggests that an MDT is likely to be cost saving compared to usual care. The remaining 4 economic evaluations assessed high risk patients receiving long term (greater than 6 months) MDT interventions. All of these economic evaluations were within-trial analyses based on RCTs included in the clinical review. One economic evaluation compared a basic MDT, an intensive MDT and usual care. Both MDT approaches involved a cardiologist and a specialist heart failure nurse. The basic MDT consisted of 20 hours of contact time, whereas the intensive MDT consisted of 40 hours contact time. This withintrial cost-utility analysis was based on the COACH trial by Jaarsma et al. 2008 included in the clinical review. The analysis found that the basic MDT intervention dominated (more effective, less costly) both the intensive MDT intervention and usual care. This paper also undertook sub-group analyses for patients with severe (NYHA class III/IV) and less severe (NYHA class I/II) heart failure. For patients with less severe HF again the basic MDT dominated both the intensive MDT and usual care. However, for patients with severe heart failure neither the basic or intensive MDT interventions were cost effective at £20,000 per QALY threshold compared to usual care (Intensive MDT ICER: £44,625). The committee discussed that those with severe heart failure are likely to be having much more input from specialists, similar to an MDT, when receiving usual care and therefore were not surprised that a formal MDT was not cost effective in this group of patients. One economic evaluation compared MDT involving a cardiologist and a specialist heart failure nurse compared to usual care. This was based on a RCT by Berger 201034 included in the clinical review. This cost-utility analysis found that the MDT was cost effective compared to usual care (ICER: £3,072 per QALY gained). This study also reported a third intervention consisting of NT-proBNP guided management in addition to multidisciplinary care. When this comparator is included in the analysis it dominates both MDT alone and usual care. One economic evaluation compared MDT involving a cardiologist experienced in geriatrics, specialist heart failure nurses, and a primary care physician to usual care. This was based on a RCT by Del Sindaco et al. 2007 included in the clinical review. This within-trial cost-effectiveness analysis found that the MDT approach saves £4,042 per death and/or heart failure-related admission avoided, and saves £2,155 per all-cause admission avoided. One economic evaluation compared MDT involving a cardiologist, specialist cardiac nurse and primary care physician to usual care. This was based on the PRICE RCT by Atienza 2004 included in the clinical review which also reported intervention costs. This study found that the MDT approach was less costly than usual care; however, the overall effects of the MDT were uncertain. The outcomes extracted in the clinical review show moderate quality evidence of a clinical harm of the MDT for mortality, but moderate quality evidence of a clinical benefit from reduced hospitalisations, and low quality evidence of an improvement in quality of life. As mentioned above, the evidence on mortality was very imprecise and based on small numbers. Overall the committee considered that overall the MDT may be cost saving and provide a clinical benefit; however, this is uncertain. No studies were identified that assessed the cost effectiveness of short term MDT intervention in high risk heart failure patients or any length MDT intervention in low risk heart failure patients. The committee agreed that the economic evidence suggests that an MDT reduces costs overall compared to usual care due to reduced hospitalisations, and noted that although each of the studies consisted of different competencies, the committee noted that a cardiologist and specialist nurse were included in all of the economic studies reviewed and therefore agreed that a physician with a subspecialty interest in heart failure, and a specialist heart failure nurse should be included in the core MDT. The committee discussed that the current composition of MDTs in clinical practice varies. The core professionals in most teams currently consist of a cardiologist and a specialist nurse as a minimum and in some cases can include many other professionals from other specialties. The committee therefore considered that the recommendation to have an MDT with a core team consisting of a physician with subspecialty interest in heart failure, a specialist heart failure nurse, competencies to manage prescribing, that could refer to other specialties if necessary, would not have an overall cost impact. |
| Other considerations | Current NHS practise in this area is variable. It was said that in some areas there is a lack of access to specialist heart failure teams, despite the previous recommendations. The committee was aware of the BHF Heart Failure Audit: this was carried out in a large proportion of NHS hospitals in England and Wales, and shows that following a decompensation 70% of patients receive an appointment for a cardiologist, and 60% of patients have a referral to a specialist cardiac nurse. The committee heard from the cardiologists in the group, who considered the HF nurses to be invaluable in managing their caseloads and clinics. The specialist nurses could often take on the management of the heart failure patients who were in need of more comprehensive support. They reported that the psychological support and care that specialist nurses provide could not be replicated by a cardiologist stand-alone clinic. They also noted that it has been the practice in the UK in many areas for specialist nurses or prescribers to optimise evidence-based medication (that is, ACE-inhibitors and beta-blockers, with MRA where appropriate), but that this is currently determined locally. From another perspective, the committee heard that patients very much valued someone to speak to about their illness, and that this is currently often delivered by HF nurses. They also spoke about how the MDT can encourage self-management, and this was more than just giving information or education, but included giving a patient confidence. They felt this was often not provided to the same level in primary care, and it may not be picked up by the studies. The committee heard from the general practitioners that they recognised that there were high risk HF patients who need more intensive support, particularly patients who had just been discharged from hospital after an acute decompensation. However, they felt that specialist input may not be required for people who are stable. They emphasised the importance of holistic care, which is best delivered by primary care professionals, particularly as most patients with heart failure have several other conditions. They would value a system that would offer timely extra support to patients and GPs when necessary, but kept primary care at the centre. The concept of medicines optimisation in HF was discussed. Often the studies reported adding medication and up-titration, but optimisation is about more: starting, stopping, adjusting, and monitoring, all tailored to the individual patient. It is especially important in this population that the prescriber is adjusting their approach depending on comorbidities, and whether this occurred is not well reported in the studies. The NICE guidelines on multi-morbidity (https://www Given the large and increasing population of patients with heart failure, with limited NHS resources, the committee agreed that the recommendations needed to prioritise specialist MDT access for those in greatest need who will gain the greatest benefit. If stable patients are managed in general practice, they will need regular review, informed by their needs. The committee emphasised the importance of a personalised approach, such as that described in the NICE multi-morbidity guideline (https://www |
9.3. Transition between heart failure care settings
9.3.1. Introduction
Given the chronic nature of heart failure and its occurrence in populations in whom multiple morbidities are common, management of heart failure involves interaction between primary and secondary care services. People with heart failure are often admitted to secondary care settings with acute deterioration in heart failure (see NICE acute heart failure; CG187) and then transferred to the care of the heart failure multidisciplinary team (MDT) for management in the community. Once their clinical care has been optimised, people with heart failure are discharged back to the care of the routine primary care service but may need to re-access care thorugh the MDT. Evidence has accumulated that that the complicated nature of these transfer processes and the complexity of liaison between different teams can affect the quality of care delivered to people with heart failure. This question reviewed patient and staff experiences of these transfer processes and sought to find evidence on how these could be improved.
9.3.2. Review question: What are the experiences/preferences of staff and patients during transition between different heart failure care settings (including primary, secondary and community care)?
For full details see review protocol in Appendix A.
Table 130
Characteristics of review question.
9.3.3. Qualitative evidence
9.3.3.1. Methods
A search was conducted for qualitative studies exploring experiences or preferences of people with heart failure (CHF) or health care professionals (HCP) regarding transition and continuity of care at the interface of different heart failure care settings. Fifteen qualitative studies were included in the review;8,14,29,47,124,126,127,133,144,202,207,209,225,294,325 these are summarised in Table 131 below. Key findings from these studies are described in the qualitative evidence synthesis (section 9.3.3.4) and summarised in the qualitative evidence summary (section 9.3.3.5). See also the study selection flow chart in Appendix C, study evidence tables in Appendix F, and excluded studies lists in Appendix I.
Table 131
Summary of studies included in the review. Abbreviations: Pt = patients with CHF, HCP = health care professionals, NYHA = New York Heart Association Functional Classification.
9.3.3.2. Qualitative synthesis
The guideline committee was aware that the issue of continuity is covered in the “Patient experience in adult NHS services” NICE Clinical Guidance February 2012 (CG138)233, and wished to build on that guidance. Therefore, this review used the framework of the recommendations from that guidance to synthesise the heart failure specific findings from this review, while also collecting heart failure specific themes not covered in that guidance.
The most relevant recommendations from CG138 are as follows:
- Assess each patient’s requirement for continuity of care and how that requirement will be met. This may involve the patient seeing the same healthcare professional throughout a single episode of care, or ensuring continuity within a healthcare team. (Continuity)
- For patients who use a number of different services (for example, services in both primary and secondary care, or attending different clinics in a hospital), ensure effective coordination and prioritisation of care to minimise the impact on the patient. (Co-ordination)
- Ensure clear and timely exchange of patient information: (Communication)
- between healthcare professionals (particularly at the point of any transitions in care)
- between healthcare and social care professionals (with the patient’s consent).
- Give the patient (and their family members and/or carers if appropriate) information about what to do and who to contact in different situations, such as ‘out of hours’ or in an emergency. (Contact and Access)
This review uses these recommendations to define four findings in which to group the subfindings of our review. We fitted evidence to this framework, and separately collected evidence that did not fit into this framework, as shown in the figure below.
Figure 6
Framework for synthesising review results.
9.3.3.3. Summary of included studies
9.3.3.4. Qualitative evidence synthesis
9.3.3.4.1. Narrative review findings
The review findings were grouped within five overarching findings, as follows:
- Continuity
- Co-ordination
- Communication
- Contact and Access
- Role of specialist heart failure services
Within most findings there were sub-findings relating to (a) challenges/problems, (b) ideas for improvement, and (c) complex transition issues. The sub-findings are presented, along with an evaluation of the quality, including an explanation for the CerQual grading that appears with each sub-finding in the summary tables in 9.3.3.5. Relevancy was judged with respect to making recommendations on this particular issue for current NHS specialist and general services, taking into account that some evidence came from studies were conducted in other countries (studies from US and outside the OECD were excluded) and before major NHS configuration changes.
1. Continuity
Review sub-finding 1a: Lack of continuity in HF care
Both people with heart failure and health professionals felt that heart failure care was fragmented, leading to a lack of continuity. This was contrasted in one study with the more seamless care offered to people with cancer. Patients who experienced lack of continuity found it made it more difficult to form therapeutic relationships, which undermined their confidence in their management plans. Patients aged 65 and under mentioned that lack of continuity sometimes led to encounters with professionals appearing anonymous and meaningless.
This sub-finding was based on four studies126,144,207,225.
Methodological limitations were rated moderate concerns overall. Two papers were rated serious limitations as they were secondary analyses with insufficient information about the original interviews. One paper was rated as moderate limitations due to lack of context and data richness. One paper was rated as minor limitations.
Coherence was rated no or very minor concerns overall. Agreement between papers was good and appeared to fit well with related findings in other studies. The only findings that tend the other way are regarding the positive influence of GPs in continuity, and this is not inconsistent.
Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was high. Concerns stemmed from two papers being from outside the UK and in a sub-set of CHF, and the data collection in a UK paper dating back to 2010. However, the finding was found in various settings, and likely to generalise well.
Adequacy was rated as no or very minor concerns. The sub-finding was general, and although explicitly supported by a limited number of studies, other studies found similar findings. The sub-finding was descriptive and the richness of data was sufficient for this.
The overall assessment of confidence was moderate, having been downgraded by one increment due to the combination of concerns in methodology and relevance.
Review sub-finding 1b: Primary care
People with heart failure and professionals working in heart failure care both recognised that primary care, and general practitioners in particular, could provide individualised care with continuity. It was acknowledged that such continuity is important to patients, and there was concern that where HF services take over a patient, this could cause patients to lose touch with primary care, with a consequent loss of continuity. In one study GPs spoke of how they wished for a “consultant” model where specialists answered questions and made recommendations, but did not take over care of the patient. In an assessment of a new heart failure service, it was emphasised by GPs that new services should integrate into the existing primary care/community multidisciplinary team, partly for this reason.
This sub-finding was based on 4 studies202,209,225,325.
Methodological limitations were rated minor overall. One paper was rated serious limitations due to the lack of explanation of methods and lack of depth of data collection. One paper was rated as moderate limitations due to the participants not being well described. Two papers were rated as minor limitations.
Coherence was rated minor concerns overall. Agreement between papers was good, showing that both patients and other health professionals value the continuity provided by GPs, and believe there is danger of that being disrupted. However, there is other data that challenges the primacy of continuity over other important factors in HF care, for instance the in-depth knowledge of the cardiologist, or the easy access to the HF nurse.
Relevance was rated minor concerns overall. The relevance of the subfinding to the focus of the review was high. Both studies that included patients were from outside the UK. A third study (of HCP) was from the Highlands of Scotland, which has rather specific challenges of geography that may affect the importance of primary care. The remaining study however, was conducted with HCP in three different trusts, offering results that seem to generalise well over settings.
Adequacy was rated as no or very minor concerns. The subfinding was fairly general, was expected, and is supported by numbers of studies. The finding was descriptive and supported adequately by the richness of data.
The overall assessment of confidence was moderate, having been downgraded by one increment due to the combined minor concerns about methodology, coherence and relevance.
Review sub-finding 1c: Discharge from HF clinic
One study that interviewed people discharged from HF clinics to primary care found that they reported having gone from a situation where they received appointments for follow-up, to one where they were no longer called for review. For some, this felt like they were no longer ill enough to qualify for help. When asked, they expressed a wish to be called to see the GP or nurse once in a while. One patient said: “I feel a bit left out, I’m not part of the health-care system anymore…” p29114
A different study speaking to HF nurses echoed this, saying that they were aware that people liked being patients in the HF clinic, and that this led to some unhappiness when it came to discharging patients. Regarding HF clinics, one says: “I see quite a lot of patients who get discharged, and they hate that. They feel safe… someone’s interested and they’re keeping an eye on me… They don’t like to lose that. They hate to lose that.” P301294
It is notable that the focussed qualitative review on continuity in CG138 found the finding of “Feelings of abandonment (when treatment ends or support not available)”, which seems to echo in this specific finding on discharge from HF clinic to primary care.
This sub-finding was based on 2 studies14,294.
Methodological limitations were rated serious overall. Two papers were rated serious limitations – the study of patient interviews because of the small number of participants (4), lack of clarity over methods, the researcher’s voice is potentially prominent and lack of richness of data; the study of HCP interviews because of limited discussion and reflection on the role of the researcher and their methods.
Coherence was rated no or very minor concerns overall. Agreement between papers was good, and while it does not directly align with the sub-finding concerning the primacy of primary care in providing continuity, it fits with the overall theme of this section regarding lack of continuity within the system as a whole.
Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was very high. Concern was due to one study being from outside the UK and the interviews being in Swedish. However the UK study of HCP shows that the issue is likely to extend to NHS services.
Adequacy was rated as moderate concerns. The sub-finding was specific, and so sufficiently supported by lower numbers of studies. The issues are well described and explained, but overall the richness of the data falls short.
The overall assessment of confidence was low, having been downgraded by 2 increments due to methodological limitations, and concerns over adequacy and relevance, while taking into account the support of the external literature.
2. Co-ordination
Review sub-finding 2a: Poor co-ordination between services
People with heart failure experience the healthcare system as being poorly co-ordinated. One consequence of poor co-ordination was increased treatment burdens, as they needed to attend hospital/clinics on multiple occasions. They also experienced being given conflicting advice, for example by the cardiologist and nephrologist, leading to uncertainty and loss of confidence. People with heart failure also found the organisation of the healthcare system unclear and confusing. Individuals recalled the difficulties they had experienced trying to get referrals to rehabilitation services and nursing services that they needed. They suggested a clearer organisational process where they could identify who had responsibility, and where things like rehabilitation were offered automatically.
This sub-finding was based on six studies29,47,126, #2771,225,325.
Methodological limitations were rated moderate overall. Two papers were rated serious limitations: a secondary analysis which did not give enough detail about data collection or context, and an interview study due to a combination of lack of researcher reflection and inadequate richness. Two papers were rated as moderate limitations due to a lack of researcher reflection, inadequate richness and lack of discussion. Two papers were rated as minor limitations.
Coherence was rated no or very minor concerns overall. The sub-finding of poor co-ordination is present throughout these six studies, and is implicit in other studies. All positive experiences encountered in this review were of individual teams, and most negative experiences in the studies are between settings – although many of these were between inpatient hospital and community, which is outside the scope of this review.
Relevance was rated minor concerns overall. The relevance of three studies was reduced as they were from outside the UK, two of the remaining studies are from before 2010, and the date of data collection from the final study is not reported. There could be concerns as to whether this is occurring in today’s NHS context; however the breadth of the data, being from multiple countries, multiple settings, and multiple time points, increases its generalisability.
Adequacy was rated as no or very minor concerns. The sub-finding was general and supported by numbers of studies. The sub-finding was descriptive and supported by the richness of data.
The overall assessment of confidence was moderate, having been downgraded by 1 increment due to concerns over methodology and relevance.
Review sub-finding 2b: Models to co-ordinate care
Clinicians acknowledged that closer co-operation would improve patient care, and potentially reduce workloads. Different (non-mutually exclusive) suggestions came from within and across papers:
- Nominating a single professional to co-ordinate care.
- Heart failure nurses working in a ‘cross-boundary’ role to encourage close working relationships.
- Co-working between primary and secondary care, possibly through means of a ‘shared-care agreement’. Such protocols were already in place for people who have other long-term conditions such as diabetes and hypertension, and enable general practitioners to manage patients in certain categories, with specialists managing patients presenting with more complexity.
Protocols such as for ‘shared-care’ were seen as having both pros and cons: they can improve transparency and facilitate co-working, but people with heart failure often also have other chronic problems and could end up being on multiple protocols, leading instead to confusion and increased burden of treatment.
This sub-finding was based on five studies124,133,202,294,325.
Methodological limitations were rated serious overall. Two papers were rated serious limitations: one due to lack of context and richness in our area of interest, the other due to lack of detail and reflection on the methods. Two papers were rated as moderate limitations: one because the aims, methodology and findings were poorly discussed, the other because there was little description of the participants. One paper was rated as minor limitations.
Coherence was rated minor concerns overall, based on the finding that clinicians see a problem and think it can be improved. Although there were a number of different improvements suggested, they were compatible with each other. It would be impossible however, to conclude in favour of any particular intervention from these data, and it is clear that there is a tension between disease-specific protocols and holistic management.
Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was high, as these models may have the potential to improve patient experience at transitions. All but one study was from the UK, and they were in a number of different settings, although some are from before 2010.
Adequacy was rated as moderate concerns. The sub-finding was general, and found in a number of studies, but there was inadequate depth (for example, there were no case studies or examples of pathways in action).
The overall assessment of confidence was low, having been downgraded by two increments due to concerns regarding methodology, and adequacy along with other minor concerns.
3. Communication
Review sub-finding 3a: There is poor communication between services
People with heart failure, their informal carers and professionals within and outside HF services all felt that there was poor communication across boundaries, especially between hospital-based services and primary / community care. Inadequate and delayed transfer of information led to burden on patients and waste of resources. In some areas it contributed to lack of / under-treatment, where management plans were not shared with the prescriber.
One patient explained how this happened: “…there were times when there was a bit of a lack of communication, you know. I would go speak to my doctor [GP] and tell him I’m on such and such, and he would say ‘I’ve not had any word about that’. And that’s part of the problem; you get a printed prescription that has, for instance, if I was on 4.5mg of Bisoprolol and they [hospital] were putting it up to 7.5, often the liaison between the hospital and the doctors wasn’t all that good”. p107207
This sub-finding was based on six studies29,47,126,133,144,207.
Methodological limitations were rated serious overall. Three papers were rated serious limitations, including two secondary analyses and one with limited detail and reflection. Three papers were rated moderate limitations, two due to lack of richness and context, and a third due to poorly defined aims and method.
Coherence was rated no or very minor concerns overall. Agreement between papers was good, and is supported by many of the other studies in an implicit way.
Relevance was rated no or very minor concerns overall. The relevance of the sub-finding to the focus of the review was very high, as communication was flagged as an issue during transitions between care settings. Concern was due to two studies being from outside the UK, and some being more than ten years old – but more recent studies report similar findings, suggesting that this issue has not significantly changed over time and probably generalises well.
Adequacy was rated as no or very minor concerns. The sub-finding is fairly general and descriptive, and was sufficiently supported by the number of studies and the richness of data.
The overall assessment of confidence was moderate, having been downgraded by one increment due to methodological limitations.
Review sub-finding 3b: Barriers to communication
Healthcare professionals identified the following barriers to cross-boundary communication: fragmented and incompatible information systems, and a lack of time. HF nurses describe in one study, for example, how they struggle to speak to GPs when they have concerns about their patients (GPs are in surgery or on house-calls during most of office hours).
This sub-finding was based on 2 studies202,209.
Methodological limitations were rated moderate overall. One paper was rated serious limitations due to lack of depth and explanations. One paper was rated as moderate limitations due to little description of participants. More data came from the latter, therefore rated as moderate overall.
Coherence was rated no or very minor concerns overall. Agreement between papers was good. Agreement with related findings in other studies was also good.
Relevance was rated no or very minor concerns overall. The relevance of the sub-finding to the subject of the review was high. Both studies were from different areas of the UK.
Adequacy was rated as serious concerns. There is some concern about both the lack of quantity of data for a finding of generality, and a lack of depth for an explanatory finding.
The overall assessment of confidence was low, having been downgraded by two increments due to concerns over methodology and adequacy.
Review sub-finding 3c: Information after discharge from HF services
Patients reported being well informed while they were in the HF clinic, but received no information after discharge to primary care. Patients interpreted this change in an ambivalent way, as if not confident in the continuing significance of their CHF and whether they needed ongoing care for their CHF.
This sub-finding was based on 1 study14.
Methodological limitations were rated serious overall. The included paper was rated serious due to small number of participants (4), poor explanation of methods and low richness of data, in which the researchers’ voice was quite prominent.
Coherence was rated no or very minor concerns overall. This specific finding could not be properly assessed, as there was no related data for comparison.
Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was very high. Concern was due to the study being from outside the UK, and the interviews being in Swedish. It is not clear to what extent the same problems occur in the NHS, but given the similarly pattern of HF clinic discharge, there is potential for the same issue to arise.
Adequacy was rated as serious concerns; it was limited by the number of participants and lack of depth.
The overall assessment of confidence was very low. The overlap between the rating of methodology and adequacy rating was taken into account when downgrading, but it was still felt necessary to downgrade by three increments due to the serious concerns raised.
4. Contact / Access
Review sub-finding 4a: Access to Routine Care
People with heart failure who were not receiving specialist treatment reported that it was challenging to access specialist advice or secondary care, and that they have to spend time trying to access these through their general practitioner. Once receiving specialist care, or after discharge, patients reported that continued access to the support they felt they needed was also not straightforward. Some patients felt that the illness itself made asking for help harder. One patient reports “If you have a heart issue you have to shout and speak for yourself and keep at somebody… And if you’re not feeling well that’s not what you want to be doing”.207 p 108 This is contrasted with patients who have cancer, who found their condition was a ‘door-opener’, so they did not have to assert their needs in the same way.
The inconsistent way care is offered is to people with CHF was also demonstrated by the impression from HF nurses that GPs have differing thresholds to refer back for specialist help, such that some GPs can leave people struggling in the community.
This sub-finding was based on 3 studies126#2749,207.
Methodological limitations were rated serious overall. Two papers were rated serious limitations as they were secondary analysis with a lack of information about how the data had originally been collected. One paper was rated as moderate limitations due to lack of description of participants.
Coherence was rated no or very minor concerns overall. Agreement between papers was good. Agreement with general, related findings in other studies was also good.
Relevance was rated minor concerns overall. The relevance of the sub-finding to the focus of the review was high, as movements in and out of HF specialist care are essentially about accessing routine care. Concern was due to two studies being from prior to 2010.
Adequacy was rated as minor concerns. This sub-finding was fairly general, and so the number of studies was a little lower than would be preferable to support it, but there were no concerns about the richness of data.
The overall assessment of confidence was low, having been downgraded by two increments due mainly to methodological concerns plus the minor concerns regarding relevance and adequacy.
Review sub-finding 4b: A Primary Contact Person
People with heart failure felt they would like one professional nominated as their primary contact person. The preferred characteristics of the relationship with their primary contact person were “a long-term relationship, characterized by openness, trust, and appreciation” p140029. Most would choose their GP as primary contact person, but some felt their cardiologist was more suitable. A key role of the primary contact would be to enable easy access for patients to care, for example timely appointments. This finding is related to finding 2b, where professionals suggested a single person coordinating care might improve co-operation.
This sub-finding was based on 1 study29.
Methodological limitations were rated moderate overall as the included paper was limited in detail and reflection.
Coherence was rated no or very minor concerns overall as it compliments some of the other related review findings.
Relevance was rated serious concerns overall as the study was not from the UK, was originally in German, and had a restrictive definition of heart failure (EF<40%).
Adequacy was rated as moderate concerns; although the sub-finding was only reported in one paper, it is well explored in that paper.
The overall assessment of confidence was low, having been downgraded by 2 increments due to relevance concerns, and also for methodology and adequacy.
Review sub-finding 4c: Access to Urgent Care
Patients found that the HF clinic provided them easy access to physicians and nurses, and healthcare professionals noted that HF nurses were able to react more quickly to sudden changes in health status than cardiologists or GPs. This leads to a discrepancy in access between those who were active on the HF clinic caseload, and those discharged to primary care. It was clear that although access to specialists was valued, consistency of care was also needed, and the two were sometimes in tension. For example in one study, a specialist nurse explained: “…patients can ring us up at any time and we can see them on that day if we need to. There is no waiting around and ringing your GP”, but GPs in that study felt patients needed a more holistic approach than the HF clinic offered because “… all they care about is the heart failure.” pp300, 303294
People with advanced heart failure and their carers reported uncertainty about where to seek help. One patient reported: “I rang my GP who said to ring the hospital, rang hospital and was told they couldn’t do anything, you have to ring GP!” p1208
This sub-finding was based on 3 studies225,294#2771.
Methodological limitations were rated moderate overall. One paper was rated serious limitations due to lack of discussion and reflection. One paper was rated as moderate limitations due to lack of discussion and reflection on methods. One paper was rated as minor limitations.
Coherence was rated no or very minor concerns overall. Agreement between papers was good, although they revealed another instance of tension between the objectives of ease of access to specialists and continuity of care.
Relevance was rated moderate concerns overall. The relevance of the sub-finding to the focus of the review was high. One patient interview study was not in the UK, and was originally in Swedish. The UK studies are both from before 2010, and the finding is likely to be sensitive to changes in service design.
Adequacy was rated as moderate concerns. This sub-finding was adequately supported by a number of studies, but was lacking in depth.
The overall assessment of confidence was low, having been downgraded by two increments due to combined concerns regarding methodology, relevance and adequacy.
5. The role of specialist HF services
Review sub-finding 5a: Expectations
The expectations of specialist HF services from people with CHF and primary care providers were seen to differ from what the service is delivering. What people providing HF specialist services think patients and primary care want is different again. For example:
- People with heart failure value the time the HF nurse has to spend with them, and the psychosocial support they provide; GPs however said they wanted HF nurses to be a resource for primary care, for advice and a point of contact with cardiology; but HF nurses felt a pressure from GPs to fill a gap in service provision. As one HF nurse states: “GPs will try to pass the buck because heart failure patients are a problem because they’re not stabilised… So they get a patient they even suspect has got heart failure, they’ll move heaven and earth to get them through your clinic because they know you’ll sort them out, give them everything they need, sort all their ‘echoes’, all their blood tests, all go back as a lovely little package.” p301294
- Healthcare professionals involved in HF services perceived GPs as wanting patients to be taken on (or not discharged) by the HF clinic. In one of the studies, those same GPs were also heard, and on the contrary expressed willingness to manage the CHF for most of their CHF patients, suggesting that the HF clinic could concentrate on the most complex cases. One GP stated: “Now that we have open access echo available [to primary care), I am much more comfortable about being the person who makes the decision, the diagnosis, and who initiates and monitors success.” p298294
This sub-finding was based on 3 studies47,202,294.
Methodological limitations were rated serious overall. Two papers were rated serious limitations due to having limited discussion and reflection, and in one case a lack of richness of data in our area of interest. One paper was rated as moderate limitations as there is little description of the participants.
Coherence was rated minor concerns overall. This was one of the least well-defined sub-findings in the review – what was clear is that different groups had certain expectations on services, but the exact nature of the expectations differed between the studies, and few studies were able to look at the difference in expectations between different groups. The finding of conflict between interested groups due to differing expectations was clear in the two service evaluations included here (which, of the study types in the review, were the studies best able to look at this issue).
Relevance was rated moderate concerns overall. The relevance of this sub-finding to the focus of the review was somewhat indirect. The issues identified may seem quite specific to the exact model of delivering HF care, but all studies were in the UK, at different time periods, so there may be a generalisable point.
Adequacy was rated as serious concerns. The sub-finding was a complex issue, not explored in depth.
The overall assessment of confidence was very low, having been downgraded by three increments for methodology, relevance and adequacy concerns.
Review sub-finding 5b: Focus
Healthcare professionals felt that HF services should be focussed on managing CHF rather than its comorbidities. HCP from HF services felt that they did not have the ability to assess and treat some comorbidities (an example condition was iron-deficiency anaemia). They also felt that addressing people’s “primary care issues” could:
- take patients out of contact with primary care, potentially causing a loss of continuity; and
- leave HF services without capacity to manage HF care across their caseload.
This sub-finding was based on 2 studies127,325.
Methodological limitations were rated moderate overall. One paper was rated serious limitations due to lack of information on methods and data analysis, and not all findings being supported by data. One paper was rated as minor limitations.
Coherence was rated no or very minor concerns overall. Agreement between papers was good. The sub-finding was compatible with other sub-findings in the review.
Relevance was rated moderate concerns overall. The relevance of this sub-finding to the focus of the review was somewhat indirect. There was also some concern due to both studies being from outside the UK.
Adequacy was rated as moderate concerns. The sub-finding was specific and supported by a number of studies, but is more than just descriptive, so would benefit from a greater richness of data.
The overall assessment of confidence was low, having been downgraded by two increments due to adequacy foremost, and also methodology and relevance.
Review sub-finding 5c: Decision to keep patients on the caseload
One study looked at care networks of patients with advanced heart failure. It found that specialists describe their decision to take over someone’s care in the HF clinic as being based on patient need (primarily from the CHF perspective) and the perceived ability of the general practitioner to fulfil these needs. The paper shows though, that actual practice varied widely, and the research team reflect that: “complexity [of the patient] interacted with the health care providers’ perspective, comfort level and available resources… to influence referral and consultation practice”p372325 Another study also reflected this, where some HF professionals acknowledged the GPs’ importance in ensuring continuity of care, but took over care despite of this because they doubted the ability of the GPs to manage heart failure.
This sub-finding was based on 2 studies202,325.
Methodological limitations were rated minor overall. One paper was rated as moderate limitations, and one as minor limitations – with the latter contributing more to this sub-finding.
Coherence was rated no or very minor concerns overall. It fits with other sub-findings, in that the decision about where CHF patients are best managed has a number of objectives, which can conflict.
Relevance was rated moderate concerns overall. The relevance of this sub-finding to the focus of the review was high from a staff experience point of view. Concern was due to one study being from outside the UK, however, the second (UK-based) study was conducted in a number of locations, which supports this being a relevant and generalisable theme.
Adequacy was rated as moderate concerns. The finding was specific, but there were still an inadequate numbers of studies. This sub-finding was both descriptive and explanatory, and there was plenty of detail in the papers. One specific concern was that part of the aim of the main study in this analysis was a partly theoretical piece, designed to look at the complexity that exists in healthcare; so the finding of complexity was partially by design.
The overall assessment of confidence was low, having been downgraded by two increments due primarily to concerns over relevance and secondly methodology and adequacy.
Figure 7
Main review findings and connections between them.
9.3.4. Economic evidence
Published literature
No relevant economic evaluations were identified.
See also the economic article selection flow chart in Appendix D.
9.3.5. Evidence statements
Qualitative
See the narrative summaries of review findings in section 1.3.3.1.
Economic
- No relevant economic evaluations were identified.
9.3.6. Recommendations and link to evidence
| Recommendations | The primary care team should carry out the following for people with heart failure at all times, including periods when the person is also receiving specailist heart failure care from the MDT:
Care after an acute event For recommendations on the diagnosis and management of acute heart failure see NICE’s guideline on acute heart failure. The primary care team should take over routine management of heart failure as soon as it has been stabilised and its management optimised. [2018] Writing a care plan The specialist heart failure MDT should write a summary for each person with heart failure that includes:
The summary should form the basis of a care plan for each person, which should include:
Give a copy of the care plan to the person with heart failure, ther family or carer if appropriate, and all health and social care professionals involved in their care. [2018] |
| Findings identified in the evidence synthesis | The review findings were grouped into findings and subfindings following the structure of the recommendations on continuity of care from the NICE Guideline CG138 “Patient experience in adult NHS services” in which four aspects of continuity of care were identified: continuity, co-ordination, communication and contact/access to health professionals and services. In addition the role of specialist services was identified as an important aspect of continuity of care for people with heart failure. For each of the five subfindings of continuity, the review identified challenges, as well as suggestions for improvement, and examples of how transition in heart failure care in particular could affect patients and patient care. The guidelines “Medicines optimisation: the safe and effective use of medicines to enable the best possible outcomes” [NG5] 2015 and “Multimorbidity: clinical assessment and management” [NG56] 2016 were also identified as covering similar findings on the management of transition and continuity of patient care. Continuity: It was found that heart failure care that is spread across different healthcare settings is fragmented, and this can have a negative effect on peoples confidence in their management plans. The evidence showed that primary healthcare services, and especially general practitioners, were good at providing continuity of care and individualised, holistic care. It suggested that specialist services should, attempt to integrate into existing primary care structures. Evidence showed that discharge from HF specialist services to general practice can be seen as a ‘loss’ by patients. The reasons for this were thought to be multifactorial and concerned the difference between specialist and GP care. These included a real or perceived reduction in the focus on the condition, a reduced awareness of the intricacies of the condition, and unfamiliarity with the history of the condition and its exacerbations. In addition to this there may be an increase in the person with HF’s sense of vulnerability at being away from specialist care or his/her access to specialist care. Co-ordination: The evidence suggested that patients find the healthcare system poorly co-ordinated and confusing to navigate. This leads to increased treatment burden, and sometimes even conflicting advice. Models to improve co-ordination suggested by health care professionals (HCPs) in the studies included a single care-coordinator, a shared-care protocol between primary and secondary care, and using HF nurses as a bridge between primary and secondary care. Communication: There was a finding of poor communication across service boundaries, especially between hospital-based and primary / community services, which can lead to extra burden on patients, and under-treatment. Some of the factors HCPs felt contributed to this were a fragmented IT system and lack of time available within appointments. Patients reported that there was a paucity of information about their condition after they had been discharged from HF services. Contact/Access: The evidence suggested that people with HF can struggle to access the services they require, and referral / re-referral to HF specific-services can be inconsistent. People with heart failure felt that things may be improved if they had a primary contact, with whom they had a relationship, and most would choose their GP. It was reported that HF clinics and HF nurses can provide easy access to urgent assessment and treatment where people are able to access them. Role of specialist HF services: Expectations of HF services, such as whether they will take over “total care” of the patient (that is, including all comorbidities), and at what point they will discharge patients to primary care, differed between professionals working within, compared with those working outside of HF-services. Some professionals found that managing issues beyond HF in the HF clinic may cause an unwanted loss of continuity in primary care and take time away from HF management. Professionals in HF services felt the decision about whether to keep a patient under follow-up in the HF clinic is complex and taken on an individual basis. |
| Quality of the evidence | The committee acknowledged the varied confidence ratings for the different subfindings in the review, some of which were fairly low. The members weighed the confidence in the individual findings with their own experience as patients and health professionals in the NHS, and agreed that the subfindings were broadly consistent with their own experiences. Continuity: The subfinding of lack of continuity was rated as moderate confidence, due mainly to methodology concerns. The subfinding of primary care as a key player in continuity was rated as moderate confidence due to minor concerns in coherence and relevance. The committee agreed with these subfindings, but also noted that general practitioners were less able to offer continuity than historically, due to different ways of working. The subfinding about discharge from HF clinic was rated as low confidence due to methodological concerns and being limited to two papers, but the committee felt that this subfinding agreed with their experiences. The lay members explained how they built up a relationship with the HF clinic whilst they experienced significant health issues, and they felt vulnerable transitioning away from this to primary care. They were less sure about the major distinction being whether appointments were given or requested, and suggested the issue was more around the certainty of the hospital setting compared with uncertainty in, and continuity through, the GP setting. Co-ordination: The finding of poor co-ordination between services was of moderate confidence, mainly due to methodological concerns, and the finding of models to co-ordinate care was rated low confidence. Lay members explained that there were resources out there, but people with heart failure were not told about them, and they were therefore underutilised. The committee agreed that HF nurses were usefully able to provide a bridge between primary care and hospital-based services. The committee felt that HF specialist nurses would ideally co-ordinate care of HF for people who are being actively managed by specialist services, but that this could be passed to general practitioners once the patient was stabilised and on optimal treatment. Communication: The subfinding of poor communication between services was rated as moderate confidence due to methodological limitations. The subfindings of barriers to clear communication was rated as low confidence due to methodological and adequacy concerns. The professionals on the committee felt that problems with communication occurred in their workplace. It was their experience that they commonly needed to have a three-way conversation or more, and that services can require a full-time administrator in order to facilitate good communication. The committee noted that the system relied upon letters going between care settings, in the absence of a universal NHS information system. The subfinding of information after discharge from HF services being insufficient was rated as very low due to methodology and it having come from only one paper. However, the committee recognised that this was a significant issue. Contact/Access: The subfinding of difficulty accessing routine care was rated low confidence due mainly to methodological limitations. The subfinding of a primary contact person was rated as very low confidence, but was seen to overlap with other findings to a large extent. The subfinding regarding access to urgent care was rated low confidence due to concerns over methodology, relevance and adequacy. Role of specialist HF services: The committee felt that some of these subfindings were inevitable in an organisation like the NHS for a condition that crosses boundaries between services. The subfinding on the expectations on HF services was rated very low confidence due to methodological concerns and lack of depth. However the committee recognised the experience of a member who had been involved in creating a local HF pathway and experienced the same issue: that people involved in different aspects of HF care had different expectations of the service. They also recognised that GPs differ in their desire to have specialist input and facility to manage heart failure and its comorbidities. The subfinding of focus for HF services was rated as low confidence due to concerns in methodology, relevance and adequacy. The committee debated these findings. Some felt that that it was impossible for cardiologists to have the expertise and capacity to provide care for all the healthcare needs of patients with heart failure whose co-morbid conditions are complex, and therefore supported a focussed approach. Others felt that compartmentalisation of the clinical features into different distinct disorders does not help patients, and their own experience is that patients really value the attempt to provide an overview of all of their diagnoses and treatment. The subfinding on the decision to keep patients on the caseload was rated as low confidence due to concerns on relevance and adequacy of the data from only two papers. The committee felt that while it was important that decisions were made on an individual basis, the NICE guidelines should promote greater consistency and transparency in these decisions. |
| Trade-off between benefits and harms | The guideline committee appreciated the richness of the data in this qualitative review. They recognised that the nature of qualitative evidence offered an opportunity to identify recurring issues and examples of good practice. Continuity: The committee acknowledged that it is sometimes necessary for patients to move between different teams / services. For example, if a patient has been unwell, it is essential for the specialist HF service to follow-up and review their management and adjust any medication as necessary; but that once the patient is stable it is often appropriate to transfer routine care back to the GP. However, GPs and lay members had experience of patients receiving care by the specialist HF service without the involvement of their GP, to whom the patient was subsequently discharged. The committee agreed that an initial care plan should be developed by the HF MDT, and that this plan and subsequent contacts with the MDT should be communicated to primary care. The patient and primary care physicians should also be informed that intense management by the HF MDT is often only needed for a limited period, and will be replaced by monitoring in primary care once their condition is stabilised. The committee considered efficient and easy access back into specialist HF MDT when needed, was very important to ensure continuity of care for the patient. This could be achieved by having an “open appointment” arrangement with the specialist MDT should difficulties arise. Having primary care embedded within the MDT may facilitate this transfer. The committee felt that the role of the general practitioner in offering a longitudinal and individualised approach should be emphasised. They felt that the patient’s clinical record should be reviewed by the general practitioner at least every six months, whether or not the person is being routinely managed by HF specialist services. This should enable active management of comorbidities and early identification of other service needs, and prevent loss of contact, and thereby encourage continuity of management between primary care and heart failure services. The idea of a GP-led review is not to duplicate the work of the MDT, but to address the wider concerns of the person with CHF. This guideline already recommends at least 6 monthly clinical reviews of patients with heart failure, and GP-review of the clinical record could easily be incorporated into this existing review where patients are being managed in primary care. Even where patients are being routinely seen in the MDT, those with other long-term conditions may already be attending primary care for reviews, and the HF review could be usefully added in to existing appointments. Co-ordination: The committee agreed that coordination between services should be a priority. The committee recognised that a single care coordinator was already advocated in the multimorbidity guideline, and this would be helpful in HF. It was felt that the named healthcare coordinator would usually be the HF specialist nurse where a person was being actively managed by the multidisciplinary specialist HF team, but at the point of transfer to routine management in primary care, this would usually change to the patient’s GP. Members also advocated collaborative working between primary and secondary care through the MDT. Lay members emphasised that there needed to be better accountability, so that decisions were not only made, but also followed through and followed up effectively. Therefore future plans, who will do what, and when, as well as where/when the next routine review will take place, should form an essential part of the care plan. Communication: The committee felt that it was important that patients have access to their health information, for their own reference, and also to inform others. There was a suggestion that patients could hold their heart failure notes, but it was felt that this was not yet practical. However, it should be the case that they receive a copy of everything that is sent about them, as is already advised in CG138, including their current care plan after every formal review. The committee attempted to define what would be included in the summary of the patients status and how the care plan would be formulated, but appreciated that this would vary depending on where the patient was in the HF pathway, and other individual factors. The committee agreed that it is essential that the patient is given a named contact and knows who is going to follow them up and when, along with current medication. After contact details and follow-up arrangements, the most important things to include were thought to be the diagnosis, current treatment, red flag signs that HF is deteriorating, and signposting to further information / sources of support. Where appropriate, it would also include aetiology of HF, social circumstances, carer needs, how they can access rehabilitation and other resources. The committee acknowledged that the full summary of status and care plan may not be ready to provide to the patient during their appointment in order that they can take a copy home with them, and agreed that it may comprise a letter to the patient and GP following the appointment. Letters should use appropriate language to communicate to the GP, with a glossary or similar to make them accessible to patients. It is not intended that two sets of letters should be produced. Contact/Access: It was seen as particularly important that patients and their carers know where to get support in both routine and urgent circumstances, as per the current patient experience guideline. Pathways could be devised locally, but the committee felt that it was important that patients with heart failure could contact the heart failure clinic or service if requiring advice or urgent care. It was acknowledged that two way communication between heart failure specialists and GPs is essential to ensure patients are well managed. Specialists need to provide a clear plan to allow medication lists to be updated and GPs also have a responsibility to inform the specialist team when the condition of the patient changes. The ideal system would be to allow all members of the MDTto access hospital, community and GP notes. However this is not yet possible in most areas. Role of specialist HF services: The committee acknowledged that local dialogue about what HF services should provide for people with CHF might be useful, but may not be practical. The reports of the complexity of treating the comorbidities of patients with CHF, the nature of sub-speciality medical training, and the lack of a universal information system, highlighted the fact that the general practitioner, or another generalist such as a geriatrician, should be actively involved throughout the heart failure pathway. It was felt that HF specialists should primarily be involved in HF optimisation, while collaborating with other healthcare providers, who would be providing for the wider needs of patients. |
| Trade-off between net effects and costs | No published economic evaluations were identified. The committee agreed that ensuring a care plan was in place and shared with the patient and necessary healthcare professionals was important to improve current barriers in co-ordination and communication for people with heart failure. The committee noted that there may be some small costs associated with the time spent on the administrative tasks such as the writing and dissemination of the care plan. However, the committee felt that providing a care plan was already standard practice in many cases, and could be achieved by changes to current paperwork rather than additional time and resource. The committee agreed that ensuring care plans are regularly updated and shared would likely improve patient treatment by reducing cases of under or over treatment and any resultant adverse events. The committee believed that the reduced treatment burden would improve patient quality of life and reduce patients’ anxiety about their condition and treatment. Therefore, overall the committee considered that any additional administrative tasks and care plans are likely to be a cost-effective use of resources. |
| Other considerations | The current experience of HF care across the country was felt to be variable due to a number of factors.. These included the degree to which GPs were engaged with national programmes such as QOF and NICE Quality Standards programme; the degree to which GPs are involved in regionally agreed long-term conditions frameworks or other benchmarking; locally agreed protocols; and the involvement of the third sector, such as patient advocate groups, in facilitating access to care. The committee felt that clarifying the roles of primary care and the rest of the multidisciplinary specialist HF team would enable commissioners and others to reduce variation by defining the structures for high quality HF care, including effective co-ordination and communication. The GP members of the committee spoke about their current involvement in the care of people with HF. They felt that it was essentially the same as for any other patient with a long term condition, and approached it in the same way. However, HF was among the most challenging conditions to manage, as people with HF tend to have multiple, complex comorbidities. This led the committee to think about including aspects of the multi-morbidity guidance when thinking about reviewing and co-ordinating care for people with HF. The committee highlighted an important sub-population of HF patients, being those that are housebound. It was recognised that they are often not reviewed by HF clinics, and not seen in the GP surgery, and therefore perhaps not routinely seen by the primary healthcare team either. It was felt that some people in these circumstances only received care once they were acutely unwell. The committee intended that these patients should be included in the recommendations regarding six-monthly review. It was reported that, in one example, reviews for housebound patients with HF were sometimes delegated to district nurses. The committee felt that HF monitoring and review should be done by someone with competencies in clinical examination and medicines optimisation. |
9.4. Information and support needs regarding diagnosis and prognosis
9.4.1. Introduction
Communication is the one of the key determinants of successful management of chronic diseases. The diagnosis of heart failure is often a shock to patients. Heart failure is a complex disorder which requires active participation of patients in its management. A large literature has developed about the perceptions and misperceptions that the diagnosis entails and about the prognosis of heart failure. Different features of the disease process are highlighted by patients and the various professional groups involved in the management of heart failure. This review aimed to identify the key factors that need to be communicated about the diagnosis of heart failure to patients and their carers, the information needed about the disease and the support required to allow care to be optimised.
9.4.2. Review question: What are the information and support needs to be considered when communicating a diagnosis and consequent prognosis, to people with heart failure, their families and carers?
For full details see review protocol in appendix A.
Table 137
Characteristics of review question.
9.4.3. Qualitative evidence
9.4.3.1. Methods
This evidence review was developed using the methods and process described in Developing NICE guidelines: the manual.236 Methods specific to this review question are described in the review protocol in appendix A.
Declarations of interest were recorded according to NICE’s 2014 conflicts of interest policy.
9.4.3.2. Summary of included studies
A search was conducted for qualitative studies exploring the communication and support needs of people with heart failure at the time when diagnosis and prognosis are relayed to them by health care professionals. Twelve qualitative studies (15 papers) were included in the review;8,26,53,102,117,123,133,141,148,207,231,302,313,328,370 these are summarised in Table 138 below. Key findings from these studies are summarised in Section 9.4.3 below. See also the study selection flow chart in Appendix C, study evidence tables in appendix F, and excluded studies lists in appendix I.
Table 138
Summary of studies included in the review.
9.4.3.3. Qualitative evidence synthesis
Table 139
Review findings.
9.4.3.3.1. Narrative summary of review findings
The review findings are grouped within four overarching findings, as follows:
- Diagnosis of heart failure
- Understanding heart failure
- Discussion of prognosis
- Improving communication/information flow
Each of these four findings contain several key subfindings that are described below along with an evaluation of the quality including an explanation for the CerQual grading that appears with the subfindings in the summary tables in section 1.3.4.
1. Diagnosis of heart failure
Review subfinding 1a: Communication is challenging
Clinicians find the first conversation disclosing the diagnosis of heart failure to the patient to be difficult. Some clinicians described the diagnosis of heart failure itself as challenging, making it even more difficult to relay information to patients.
This subfinding was based on two studies.26,133,313
Methodological limitations were rated moderate concerns overall. Both studies were rated as moderate limitations due to lack of context and the role of the researcher, plus data analysis in one study and data richness in the other.
Coherence was rated no or very minor concerns overall. Agreement between papers was good and appeared to fit well with related findings in other studies.
Relevance was rated no or very minor concerns overall. The relevance of the subfinding to the focus of the review was high. The data stemmed from two papers from the UK in a relevant population.
Adequacy was rated as minor concerns. The subfinding was general, and although explicitly supported by only a limited number of studies, other studies found similar themes. The subfinding was descriptive but the richness of data was somewhat lacking.
The overall assessment of confidence was moderate, having been downgraded by one increment due to methodological and adequacy limitations.
Review subfinding 1b: Timing and setting
The reluctance by some GPs to diagnose patients meant that some patients received a shock diagnosis when admitted to secondary care. Receiving the diagnosis during an unplanned hospital admission was deemed “unhelpful and inadequate by clinicians, patients and their carers” (Simmonds 2015) as diagnosis could not be relayed in a sensitive manner to the patient and family who had no time to assimilate the information in this busy environment. Patients with good access to hospital- and community-based heart failure specialist nursing teams reported more positive experiences of communication regarding diagnosis.
This subfinding was based on three studies.26,117,313
Methodological limitations were rated moderate concerns overall. Two studies were rated as moderate limitations due to lack of context and role of the researcher, plus data analysis in one study and data richness in the other. One study had serious limitations due to lack of context, role of the researcher, data collection and richness of data.
Coherence was rated as minor concerns overall. Agreement between papers was good and appeared to fit well with related findings in other studies. The only findings that tended to be the other way are regarding the positive experience of patients with good access to specialist nursing teams.
Relevance was rated no or very minor concerns overall. The relevance of the subfinding to the focus of the review was high. The data stemmed from three studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. The subfinding was general, and although explicitly supported by a limited number of studies, other studies found similar themes. The finding was descriptive and the richness of data was sufficient for this.
The overall assessment of confidence was moderate, having been downgraded by one increment due to the combination of concerns in methodology and coherence.
Review subfinding 1c: Gradual process
Diagnosis was seen by healthcare professionals as a gradual process which in turn makes the communication of the diagnosis a gradual process. They emphasised the need to provide information and guidance as part of an ongoing conversation with the patient and family. Heart failure specialist nurses and GPs were seen as key to the success of this process.
This subfinding was based on three studies.26,133,207,313
Methodological limitations were rated moderate concerns overall. Two studies were rated as moderate limitations due to a lack of context and role of the researcher, plus data analysis in one study and data richness in the other. One study had serious limitations due to the secondary use of data and the subsequent inability to assess their methodology in detail, along with vague description of the analysis.
Coherence was rated no or very minor concerns overall. Agreement between papers was good.
Relevance was rated no or very minor concerns overall. The relevance of the subfinding to the focus of the review was very high. The data stemmed from three studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. The subfinding was general, and although explicitly supported by a limited number of studies, other studies found similar themes. The finding was descriptive and the richness of data was sufficient for this.
The overall assessment of confidence was moderate, having been downgraded by one increment due to the concerns in methodology.
Review subfinding 1d: Terminology
Clinicians stated that they felt that the terminology affected communication. They wanted patients to understand their condition but also wished to avoid upsetting them and extinguishing their hope. Only very few healthcare professionals described using the term ‘heart failure’; it was regarded by most of them as an anxiety-invoking term (similar to a cancer diagnosis). So instead many resorted to using euphemisms (e.g. ‘ageing heart’, ‘stiff heart’, ‘heart not pumping efficiently’) or paradoxically even more complex terminology (e.g. ‘left ventricular failure’).
These alternative explanations often led to poorer communication, confusion for people with heart failure and lack of interest in their diagnosis as a consequence.
People with heart failure were often unaware of the term ‘heart failure’. Many described that the term was not mentioned initially but introduced later on by specialists, often leading to shock and confusion for the patients.
This subfinding was based on six studies.8,26,133,207,231,313,328
Methodological limitations were rated moderate overall. Five studies were rated moderate limitations: two studies due to lack of context and role of the researcher, plus data analysis in one study and data richness in the other. Another two studies due to lack in data richness, plus missing information on the topic guide in one, and lack of reflection on the role of the researcher and loose link between findings and conclusions in the other. The fifth study due to no reflections on role of researcher and lack of detail on methodology. One study had serious limitations due to the secondary use of data and the subsequent inability to assess their methodology in detail, along with vague description of the analysis.
Coherence was rated minor concerns overall. Agreement between papers was very good except one where healthcare professionals actually used the terminology ‘heart failure’ with all their patients.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from three studies from the UK in a relevant population.
Adequacy was rated as no concerns. The subfinding was explicitly supported by quite a few studies in much detail.
The overall assessment of confidence was moderate, having been downgraded by one increment due to the concerns in methodology and coherence.
2. Understanding heart failure
Review subfinding 2a: Understanding of diagnosis
There is variability in the complexity and depth of patients’ understanding of their diagnosis.
Most patients showed poor knowledge and misunderstanding of their condition and its implications, including treatments, their importance, side effects and limitations. Many did not connect symptoms they had to their heart failure; some even deduced their diagnosis from the medications they were taking. The lack of understanding was often compounded by confusion and short-term memory loss that is associated with heart failure.
However, other patients showed a high level of interest in their illness, were proactive in seeking information (e.g. online), knew how to manage their condition, and were well informed and equipped for informed exchanges with healthcare professionals about heart failure. In one study the authors noted, however, that this was an unusual group of younger patients and/or those with a background in health.
Healthcare professionals were sympathetic to patients’ uncertainty about the meaning of their diagnosis and about treatments, as they were aware that a lack of time for communication contributed to poor understanding.
This subfinding was based on nine studies.8,26,53,117,133,141,207,231,328
Methodological limitations were rated serious overall. Five studies were rated moderate limitations due to a mix of reasons including a lack of the role of researcher, data richness and details of methodology. Three studies were rated serious limitations; one study due to the secondary use of data and the subsequent inability to assess their methodology in detail, along with vague description of the analysis. Two studies due to the lack of richness of data, context and the role of the researcher, as well as a lack of information on data collection in one study and the reasoning for the choice of methods in the other. One study had very serious limitations due to limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and link to conclusions.
Coherence was rated minor concerns overall. Agreement between papers was very good with the majority demonstrating patients’ lack of understanding of their diagnosis. Only very few papers also described that some patients had a very good understanding of their condition. As a certain degree of variability in people’s understanding is expected and all papers were in agreement that the majority lacked the understanding, the concerns were rated as minor overall.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from nine studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. The subfinding was general and supported by numbers of studies; it was descriptive and supported by the richness of data.
The overall assessment of confidence was low, having been downgraded by two increments due to concerns over methodology and coherence.
Review subfinding 2b: Knowledge and management
Some patients did not want to know more about their diagnosis as it would cause them to worry, and they chose to put all their trust into healthcare professionals to make decisions for them. Yet, others described having received too little information about their diagnosis and some received contradicting information that caused them confusion. These patients felt that the lack of knowledge caused them panic attacks and anxiety about the practicalities of what to do in a crisis, for example.
This subfinding was based on five studies.26,102,117,148,328
Methodological limitations were rated serious overall. Two studies were rated moderate limitations: one due to limitations in context, the role of researcher and data analysis, and another study due to missing information on the topic guide and the lack of data richness in sections relevant to this review. Three studies were rated serious limitations due to a lack of information on the role of the researcher, data richness as well as lack of rigour in research methods.
Coherence was rated minor concerns overall. Agreement between papers was good in that they all reported a range of people’s attitudes. Variability in people’s attitudes is expected, hence the concerns were rated as minor overall.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from five studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. The subfinding was general and supported by numbers of studies; it was descriptive and supported by the richness of data.
The overall assessment of confidence was low, having been downgraded by two increments due to concerns over methodology and coherence.
3. Discussion of prognosis
Review subfinding 3a: Difficult conversations
Staff noted that discussions of prognosis are difficult, given the difficulty of diagnosis in the first place and due to the unpredictable disease trajectory of heart failure, and they were reluctant to have them. Some healthcare professionals also found it challenging to balance the need to be honest with the patient about their condition (which could raise anxiety) with building trust and maintaining hope and a positive outlook when faced with a life-threatening illness. Some healthcare professionals considered that patients may not want to know everything about their prognosis, perhaps hinting at a degree of paternalism or recognition of denial as a way of coping.
Some felt it was more appropriate to address prognosis over time, given these uncertainties and in response to changing circumstances, particularly when a patient might be approaching the end of their life.
A common professional perception was that these types of exchange between clinician and patient did not happen often enough. In one study cardiac staff confirmed that issues such as future care in the event of an exacerbation or end-of-life preferences are rarely raised with patients. It was suggested that lessons could be learnt from communication in cancer where clear information about prognosis is provided to patients. However, the staff reported having difficulties handling patient denial, discussing poor prognosis and dealing with the emotional involvement of patients and their families. It was said in this study that cardiac staff often lack the communication skills required to handle these sensitive issues.
This subfinding was based on six studies.26,53,133,141,207,231,302
Methodological limitations were rated serious overall. Three studies were rated moderate limitations due to the lack of the role of the researcher, plus another two out of the following limitations: lack of context, data richness, data analysis or loose linkage between findings and conclusions. Two studies were rated serious limitations, one due to the secondary use of data and the subsequent inability to assess methodology in detail, along with vague descriptions of this analysis; whilst the second study due to a lack of reflection on the researcher role in the study, limited context, reasoning for the choice of methods and richness of data. One study was rated as having very serious limitations due to the limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and a link to conclusions.
Coherence was rated no or very minor concerns overall. Agreement between papers was very good.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from six studies from the UK in a relevant population.
Adequacy was rated as no concerns. The subfinding was explicitly supported by quite a few studies in much detail.
The overall assessment of confidence was moderate, having been downgraded by one increment due to methodological limitations.
Review subfinding 3b: Understanding of prognosis
Patients often reported that prognosis was rarely discussed. Some patients were aware of the seriousness of their condition but reported a lack of understanding of the prognosis. Some patients were unaware that heart failure is a terminal condition and reported feeling very frightened when informed at the end-stage.
This subfinding was based on five studies.8,26,53,207,231
Methodological limitations were rated moderate overall. Three studies were rated moderate limitations due to limitations on the role of the researcher and methodology, as well as limitations in context for one study and data richness and lack of link between findings and conclusions for another study. Two studies had serious limitations: one study due to the secondary use of data and the subsequent inability to assess methodology in detail, along with vague descriptions of this analysis; and the second study due to the lack of reflection on the researcher role in the study, limited context, reasoning for choice of methods and richness of data.
Coherence was rated minor concerns overall. Agreement between papers was very good with the majority demonstrating patients’ lack of understanding of their prognosis. It was only slightly downgraded to minor concerns overall due to some variability in patients’ understanding.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from five studies from the UK in a relevant population.
Adequacy was rated as no concerns. The subfinding was explicitly supported by quite a few studies.
The overall assessment of confidence was moderate, having been downgraded by one increment due to moderate methodological and minor coherence limitations.
Review subfinding 3c: Patients’ concerns
Some patients preferred not to know more about their prognosis, perhaps using denial as a way of coping. Yet most others, including carers, felt they were inadequately informed by healthcare professionals, and felt uncertainty about what would happen as the disease progressed. “Thinking about the future was a common preoccupation, with patients expressing very realistic concerns that their life expectancy was limited.” (Aldred 2004)
This subfinding was based on seven studies.8,26,53,117,133,148,370
Methodological limitations were rated moderate overall. Four studies were rated moderate limitations: each due to a number of limitations that included some of the following; limitations in context, role of researcher, data analysis, research methods rigour, and/or data richness in some sections relevant to our review. Three studies were rated serious limitations due to a lack of reflection on the role of the researcher and data richness; plus limited context and reasoning for the choice of methods for one study, lack of information on context and data collection for another, and lack of rigour of research methods, study aims, and relevance of findings for the third study.
Coherence was rated minor concerns overall. Agreement between papers was good in that they all reported a range of people’s attitudes and concerns. Variability in people’s attitudes is expected, hence the concerns were rated as minor overall.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from seven studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. The subfinding was general and supported by a number of studies. The finding was descriptive and supported by the richness of data.
The overall assessment of confidence was moderate, having been downgraded by one increment due to moderate methodological and minor coherence limitations.
4. Improving communication/information flow
Review subfinding 4a: Education and joint working
GPs expressed a need for education around the identification and diagnosis of heart failure patients; and that with such an improvement in their own understanding their ability to communicate this information to the patient would improve. They felt that “changes needed to be made within the health profession first” before information on the identification and diagnosis of heart failure can be more clearly communicated to patients (Barnes 2006).
Further, in one study cardiology and palliative care staff reported a lack of clarity regarding what had previously been discussed with and disclosed to patients. They recommended “mutual education and joint working” between the specialties to improve communication to the patient and family (Harding 2008).
This subfinding was based on two studies.26,141
Methodological limitations were rated serious overall. One study had moderate limitations due to limitations in context, role of researcher and data analysis. Another study had very serious limitations due to the limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and link to conclusions.
Coherence was rated no or very minor concerns overall. Agreement between papers was good.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from two studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. Although the subfinding was explicitly supported by only two studies, it was provided in much detail.
The overall assessment of confidence was moderate, having been downgraded by one increment due to serious methodological limitations.
Review subfinding 4b: Ongoing relationship
Healthcare professionals reported that because appointments with consultants are too short to relay all the information a patient would need regarding diagnosis and prognosis, patient education was often delegated to specialist nurses in the outpatient or community setting. Healthcare professionals suggested that education was best delivered within the ongoing relationship between the specialist nurse and patient, in particular during home visits where patients are more relaxed and able to assimilate information.
In support of this some patients reported that they find it easier to communicate with nurses than to cardiologists and it was suggested that the specialist nurse environment was a good place to discuss patients’ condition and give information.
This subfinding was based on two studies.26,133,313
Methodological limitations were rated moderate overall. One study had moderate limitations due to limitations in context, the role of researcher and data analysis. Another study was rated as having moderate limitations due to a lack of context, reflections on the role of the researcher, and data richness in some sections relevant to this review.
Coherence was rated no or very minor concerns. Agreement between papers was very good.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from two studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. Although the subfinding was explicitly supported by only two studies, it was illustrated in much detail.
The overall assessment of confidence was high, as the moderate limitations in methodology were offset by the richness of data provided by these two studies.
Review subfinding 4c: Tailoring of information
Healthcare professionals suggested that information needed to be tailored to the need of the individual as some people are more able and/or willing to hear information than others. Also, people with heart failure tend to be older, more likely to accept what a doctor says and not proactive in asking questions (e.g. some patients may be unwilling to raise questions about prognosis). They may also be more likely to have short-term memory loss, are too ill to benefit from education or are in denial about their condition etc. Consequently, specialist nurses spoke of the necessity to find a balance between the education they offered patients and their capacity to receive it. As a consequence they tried to identify key issues and personalise the information accordingly. This would involve repeating these messages over time.
This subfinding was based on seven studies.26,53,117,133,141,231,328
Methodological limitations were rated moderate overall. Four studies were rated moderate limitations: each due to a number of limitations that included some of the following; limitations in context, role of researcher, data analysis, research method rigour, and/or data richness in some sections relevant to this review. Two studies were rated serious limitations due to lack of reflection on researcher role in the study, limited context and data richness, plus lack of reasoning for choice of methods in one study and limitations in data collection for the other. One study was rated very serious limitations due to the limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and link to conclusions.
Coherence was rated no or very minor concerns. Agreement between papers was very good.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from seven studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. The subfinding was explicitly supported by seven studies, and it was illustrated in much detail.
The overall assessment of confidence was high, as the moderate limitations in methodology were offset by the richness of data provided by these seven studies.
Review subfinding 4d: Improving access to information
Patients who wished for more information sought a “better understanding of the disease process, the practical limitations, how to get help and how to cope with living with heart failure” Horne 2004). Some people with heart failure wished to be told openly and sensitively about their (poor) prognosis by clinicians, with some wanting to know more accurately when they would die. As some patients reported not having received written information of their heart failure diagnosis, ensuring that information pamphlets are passed on during consultations is vital so that patients can go through them at home in their own time.
Patients expressed the desire for information regarding both diagnosis and prognosis to be communicated using lay terms.
Family and informal carers wished to be involved in all communications in order to support the patient in their role of family information providers. Carers also asked for more information about what to do in an emergency, how to recognise when signs and symptoms needed urgent attention and how to perform cardiopulmonary resuscitation.
The provision of information on access to a telephone advice line or support group was also suggested.
This subfinding was based on six studies.8,26,141,148,231,370
Methodological limitations were rated moderate overall. Four studies were rated as moderate limitations: each due to a number of limitations that included some of the following; limitations in context, role of researcher, data analysis, research methods rigour, and/or data richness in some sections relevant to this review. One study was rated as serious limitations due to study aims, role of the researcher, rigour of research methods, data richness and relevance of findings. One study was rated very serious limitations due to the limited information on the background and reflection of the researcher, data collection, data richness, relevance of findings and link to conclusions.
Coherence was rated minor concerns overall. Although the suggestions for how to improve access to information varied, overall the agreement between papers was good.
Relevance was rated no or very minor concerns. The relevance of the subfinding to the focus of the review was very high. The data stemmed from six studies from the UK in a relevant population.
Adequacy was rated as no or very minor concerns. The findings were supported by a few studies in much detail.
The overall assessment of confidence was moderate, having been downgraded by one increment due to moderate methodological and minor coherence limitations.
9.4.3.4. Qualitative evidence summary
Table 140
Summary of evidence.
9.4.4. Economic evidence
Published literature
No relevant economic evaluations were identified.
See also the economic article selection flow chart in Appendix D.
9.4.5. Evidence statements
Qualitative
See the narrative summaries of review findings in section 9.4.3.3.1.
Economic
- No relevant economic evaluations were identified.
9.4.6. Recommendations and link to evidence
| Recommendations | When giving information to people with heart failure, follow the recommendations in the NICE guideline onpatient experience in adult NHS services. [2018] Discuss the person’s prognosis in a sensitive, open and honest manner. Be frank about the uncertainty in predicting the course of their heart failure. Revisit this discussion as the person’s condition evolves. [2018] Provide information whenever needed throughout the person’s care. [2018] Consider training in advanced communication skills for all healthcare professionals working with people who have heart failure. [2018] First consultations for people newly diagnosed with heart failure The specialist heart failure MDT should offer people newly diagnosed with heart failure an extended first consultation, followed by a second consultation, to take place within 2 weeks if possible. At each consultation:
|
| Findings identified in the evidence synthesis | The evidence from the review was grouped into four findings, each of which contained multiple sub-findings. These key findings are summarised below. Diagnosis of heart failure: the evidence suggested that clinicians find the diagnosis itself and the ensuing communication around diagnosis challenging. The timing of and setting in which the diagnosis is communicated is important, taking care to avoid busy environments that do not foster the sensitive relay of information. The diagnosis itself was seen as a gradual process allowing the information and guidance around diagnosis to be passed on to patients in a manageable way. The evidence suggested that the term ‘heart failure’ was regarded by healthcare professionals as anxietyinvoking, with many health care providers making use of euphemisms or even more complex terminology instead. These alternative explanations often led to a poorer understanding, confusion for people with heart failure and a lack of interest in their diagnosis as a consequence. Understanding heart failure: it was found that although there is variability in patients’ understanding of their diagnosis; it is generally poor and often misunderstood by people. Many did not connect symptoms they had to their heart failure; and showed poor knowledge of treatments, their importance, side effects and limitations. The lack of understanding was often compounded by confusion and short-term memory loss that is associated with heart failure. Patients’ desire for more knowledge about their condition and its management is highly individual. Some patients did not want to know more about their diagnosis as it would cause them to worry. Yet, others described that having received too little or conflicting information about their diagnosis caused them anxiety. Some people were proactive in seeking information themselves and knew how to manage their condition. Discussion of prognosis: staff reported difficulties in discussing prognosis and future care options due to the unpredictable disease trajectory, uncertainty about whether patients wanted to know their prognosis, and the challenge of handling the emotional response of patients and their families. Some healthcare professionals also found it challenging to balance the need to be honest with the patient about their condition (which could raise anxiety) with building trust and the desire to maintain hope and a positive outlook for patients faced with a life-limiting illness. Patients identified that prognosis was rarely discussed and the evidence showed that their understanding of their prognosis was generally poor. Patients’ desire for more knowledge about their prognosis was highly individual, whilst some preferred not to know more, many were worried by the uncertainty of what the future held. Improving communication/information flow: staff identified training and education needs regarding diagnosing and prognosticating heart failure to improve communication with the patient and family. Staff commented that single consultant appointments are too short to relay all the information a patient would need regarding diagnosis and prognosis. It was suggested that information and education be delivered within the context of a relationship of trust and continuity between the patient and the health care professional, and in an appropriate setting. Healthcare professionals identified the variability in patients’ ability and willingness to receive information about their condition requires staff to tailor the information to the needs of the individual. Many patients desire more detail, preferably in lay terms, written information and greater access to support. Family and informal carers wished to be involved in all communications. |
| Quality of the evidence | The confidence ratings for the different sub-findings in the review were varied, ranging from high to low. The members weighed the confidence in the individual findings with their own experiences, and agreed that they were broadly consistent. Diagnosis of heart failure: All 4 sub-findings within this finding, namely communication is challenging, timing and setting, gradual process and terminology, were rated as moderate confidence. This was mainly due to methodology concerns, as well as minor coherence limitations in a 2 findings and minor adequacy limitations in 1 sub-finding. Understanding heart failure: Both sub-findings within this finding, understanding of diagnosis and knowledge and management, were rated as low confidence having, in both instances, been downgraded by 2 increments due to concerns over methodology and coherence. Discussion of prognosis: All 3 sub-findings within this finding, namely difficult conversations, understanding of prognosis, and patients’ concerns, were rated as moderate confidence. This was mainly due to limitations in methodology, as well as minor coherence limitations for the last 2 sub-findings. Improving communication/information flow: Two sub-findings (education and joint working and improving access to information) were rated as moderate confidence having been downgraded mainly due to serious methodological limitations. The other 2 sub-findings within this finding, ongoing relationship and tailoring of information, were rated as high confidence as the moderate methodological concerns were offset by the data richness provided by the studies. |
| Trade-off between benefits and harms | The committee agreed that the findings and sub-findings identified in the review resonated with their own experiences as healthcare professionals or patients within heart failure services in the NHS. The committee acknowledged that some of the sub-findings identified in the review reflect general issues around communication and information needs in health care and are addressed by recommendations in the patient experience guideline CG138. The committee identified several key recommendations in that guideline which, if implemented in heart failure services, would go some way towards addressing the issues identified in the review. Highly pertinent recommendations from CG138 include ‘allow adequate time so that discussions do not feel rushed’ (1.3.4.), ‘clarify with the patient at the first point of contact whether and how they would like their partner, family members and/or carers to be involved in key decisions’ (1.3.10), ‘avoid the use of jargon and define unfamiliar words’ (1.5.6), provide ‘both oral and written information’ (1.5.12), and to ‘give the patient the opportunity to discuss their diagnosis, prognosis and treatment options’ (1.5.21). The committee agreed that there was no need to replicate these recommendations in this guideline and instead decided to cross refer to the patient experience guideline. The committee decided to focus on the issues raised that are specific to the communication of the diagnosis and prognosis of heart failure. In line with the review findings, the committee was unanimous that a single consultation was too short to explain the diagnosis to the patient and the amount of information that would have to be relayed could be overwhelming. This echoed the general recommendation in the patient experience guideline to allow adequate time so that discussions do not feel rushed (section 1.3). Building on this, the committee recommended an extended first consultation followed by a prompt (usually within 2 weeks) follow-up appointment with any member of the specialist multidisciplinary team. The committee considered a 2 week gap between the first and second appointment as reasonable and reflected usual practice whilst acknowledging this may not always be possible or appropriate in all situations. To foster continuity of care and building of the future ongoing relationship, the committee recommended that the patient would be told who they would see at their next consultation (a member of the specialist heart failure multidisciplinary team) and explained what they can expect to happen. The committee also discussed the importance of having family members/carers involved in communication from an early stage as receiving bad news in the form of the diagnosis of heart failure can be overwhelming for the patient. Carers may also be better able to take on board information provided regarding ongoing care and management than the patient who has just been given a diagnosis. Additionally, family members and carers often struggle with how best to help when the patient has conveyed information poorly or partially to them. For this reason, the inclusion of a family member or carer in one or more consultations will improve the understanding of the condition and the potential support provided to the patient. The committee acknowledged that this was covered by the patient experience guideline (particularly section 1.3) and agreed to include a cross reference to that guidance in their recommendations. It was agreed that the following points should be communicated to the patient in the first 2 appointments with the heart failure MDT:
The committee did not support the use of euphemisms and suggested that health care professionals use the term ‘heart failure’ in an open and honest manner with the patient, explaining its meaning in detail, dispelling any myths or other fears induced by the language, and providing a balanced picture of the condition. The committee discussed that imagery used to describe heart failure by some healthcare professionals can be received poorly by patients. To avoid confusion for patients it was suggested that healthcare professionals could practice some phrases to explain the condition before seeing the patient. The committee acknowledged that discussion of prognosis should be a gradual process and may not necessarily be discussed in the first consultation as it is highly difficult to predict, particularly in the early stages of the condition. The prognosis needs to be discussed in a sensitive, open and honest manner, ensuring that the unpredictability of the prognosis and any uncertainty regarding life expectancy is conveyed. The positive effects of treatments available should also be discussed. The group acknowledged the difficulty patients may have coming to terms with information around their own prognosis which highlights the importance of an immediate follow-up consultation and the engagement of family/carers (where the patient consents to their presence). This consultation provides reinforcement of the key implications of the diagnosis and prognosis and, especially where a family member or carer is present, clarification of any misperceptions. To facilitate a quick rapport with the patient and to tailor information to the patient’s needs (in line with the recommendations of the patient experience guideline), the consultant committee members suggested including any preferences the patient had, regarding the level and type of information they want to be given, into the referral form from primary care. Another suggestion was for patients to complete a simple questionnaire before the first appointment identifying key areas they would like to discuss during the consultation. The committee acknowledged that the communication of these challenging issues requires specific skills that not all healthcare professionals have, and supported the provision of training in advanced communication skills to all heart failure staff. Specific information on heart failure issues could be incorporated into broader communication training for chronic or life-limiting conditions. The importance of consistency was discussed. It was agreed that the patient should receive consistent information from all MDT members. The committee recognised that this was closely linked to the separate evidence review on ‘Transition between heart failure care settings’ and the recommendations developed out of that review. The need for printed leaflets on heart failure to be available within the NHS was unanimously agreed by the committee as patients value the provision of information that they can take away with them to read and absorb in their own time. The committee also acknowledged that patients need to be directed to reliable sources of information outside the NHS – for example, British Heart Foundation, Pumping Marvellous, Cardiomyopathy UK. |
| Trade-off between net effects and costs | No previously published economic evaluations were identified for this question. The committee considered that overall the recommendations made above in conjunction with the patient experience guideline would improve patient satisfaction and help reduce anxiety about their condition and as a result lead to an improvement in quality of life. The majority of the recommendations made above will not incur any cost as they simply specify what information should be given to patients and the manner in which it should be delivered. However, the committee acknowledged that a couple of the recommendations could have cost implications. Firstly, an extended first consultation will incur an additional cost due to the required extra time from the clinician to fully explain the person’s diagnosis and prognosis. However, the committee considered that a standard consultation appointment is unlikely to be long enough to allow sufficient time to explain the diagnosis and prognosis as recommended in the patient experience guideline and thought this was necessary for good clinical practice. Furthermore, this type of recommendation is endorsed by the patient experience guideline which specifies that when discussing patient views and preferences that adequate time should be allowed so that discussion does not seemed rushed. In many centres, extended consultations are likely to already be occurring. The committee also acknowledged that further communication training would incur a cost. The committee were aware of training for other chronic conditions that could also be extended to heart failure specialists. Furthermore, such training is likely be undertaken in a group setting to minimise cost, or alternatively could be provided through e-learning, or at medical school in future. The committee acknowledged that the benefits of improved communication training would be advantageous across the entire treatment pathway for chronic heart failure patients as well as other conditions outside of heart failure, and therefore overall, the long-term cost effectiveness of training in effective communication is likely to be negligible. |
| Other considerations | The committee acknowledged ‘The Second Conversation Project’ which was currently piloting an educational intervention, to enable junior doctors to build their skills and confidence in navigating end of life discussions which they agreed would provide insight into the benefit of this type of training and may be extrapolated to the heart failure population. |
9.5. Recommendations
9.5.1. Multi-disciplinary teams
- 71.
The core specialist heart failure multidisciplinary team (MDT) should work in collaboration with the primary care team, and should include:
- a lead physician with a subspecialty interest in heart failure (usually a consultant cardiologist) who is responsible for making the clinical diagnosis
- a specialist heart failure nurse
- a healthcare professional with expertise in specialist prescribing for heart failure. [2018]
- 72.
The specialist heart failure MDT should directly involve, or refer people to, other services, including rehabilitation services, and tertiary and palliative care, as needed. [2018]
- 73.
The specialist heart failure MDT should:
- diagnose heart failure
- give information to people newly diagnosed with heart failure (see section 9.4.6)
- manage newly diagnosed, recently decompensated or advanced heart failure (NYHA [New York Heart Association] class III to IV) heart failure
- optimise treatment
- start new medicines that need specialist supervision
- continue to manage care after an interventional procedure such as implantation of a cardioverter defibrillator or cardiac resynchronisation device
- manage heart failure that is not responding to treatment. [2018]
9.5.2. Transition between heart failure care settings
- 74.
The primary care team should carry out the following for people with heart failure at all times, including periods when the person is also receiving specialist heart failure from the MDT:
- ensure effective communication links between different care settings and clinical services involved in the person’s care
- lead a full review of the person’s heart failure care, which may form part of a long-term conditions review
- recall the person at least every 6 months and update the summary and clinical record
- ensure that changes to the clinical record are understood and agreed by the person with heart failure and shared with the specialist heart failure MDT
- arrange access to specialist heart failure services if needed. [2018]
9.5.2.1. Care after an acute event
For recommendations on the diagnosis and management of acute heart failure see NICE’s guideline on acute heart failure.
- 75.
People with heart failure should generally be discharged from hospital only when their clinical condition is stable and the management plan is optimised. Timing of discharge should take into account the wishes of the person and their family or carer, and the level of care and support that can be provided in the community. [2003]
- 76.
The primary care team working within the specialist heart failure MDT should take over routine management of heart failure as soon as it has been stabilised and its management optimised. [2018]
9.5.2.2. Writing a care plan
- 77.
The specialist heart failure MDT should write a summary for each person with heart failure that includes:
- diagnosis and aetiology
- medicines prescribed, monitoring of medicines, when medicines should be reviewed and any support the person needs to take the medicines
- functional abilities and any social care needs
- social circumstances, including carers’ needs. [2018]
- 78.
The summary should form the basis of a care plan for each person, which should include.
- plans for managing the person’s heart failure, including follow-up care, rehabilitation and access to social care
- symptoms to look out for in case of deterioration
- a process for any subsequent access to the specialist heart failure MDT if needed
- contact details for:
- a named healthcare coordinator (usually a specialist heart failure nurse)
- local heart failure specialist care providers, for urgent care or review
- additional sources of information for people with heart failure. [2018]
- 79.
Give a copy of the care plan to the person with heart failure, ther family or carer if appropriate, and all health and social care professionals involved in their care. [2018]
9.5.3. Information and support needs regarding diagnosis and prognosis
- 80.
When giving information to people with heart failure, follow the recommendations in the NICE guideline on patient experience in adult NHS services. [2018]
- 81.
Discuss the person’s prognosis in a sensitive, open and honest manner. Be frank about the uncertainty in predicting the course of their heart failure. Revisit this discussion as the person’s condition evolves. [2018]
- 82.
Provide information whenever needed throughout the person’s care. [2018]
- 83.
Consider training in advanced communication skills for all healthcare professionals working with people who have heart failure. [2018]
9.5.3.1. First consultations for people newly diagnosed with heart failure
- 84.
The specialist heart failure MDT should offer people newly diagnosed with heart failure an extended first consultation, followed by a second consultation, to take place within 2 weeks if possible. At each consultation:
- discuss the person’s diagnosis and prognosis
- explain heart failure terminology
- discuss treatments
- address the risk of sudden death, including any misconceptions about that risk
- encourage the person and their family or carers to ask any questions they have. [2018]
- Referral and approach to care - Chronic Heart Failure in AdultsReferral and approach to care - Chronic Heart Failure in Adults
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