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National Clinical Guideline Centre (UK). Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms. London: Royal College of Physicians (UK); 2012 Feb. (NICE Clinical Guidelines, No. 138.)

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  • Update information: June 2021: the section on shared decision making was replaced by the NICE guideline on shared decision making. Minor updates June 2021: appendix A on recommendations adapted from published clinical guidelines was removed. February 2020: the quality statements in the guideline was replaced with a link to the updated NICE quality standard on patient experience in adult NHS services. October 2015: recommendation 1.4.3 was updated to cite the Health and Social Care Safety and Quality Act 2015. You can see these changes at www.nice.org.uk/cg138

Update information: June 2021: the section on shared decision making was replaced by the NICE guideline on shared decision making. Minor updates June 2021: appendix A on recommendations adapted from published clinical guidelines was removed. February 2020: the quality statements in the guideline was replaced with a link to the updated NICE quality standard on patient experience in adult NHS services. October 2015: recommendation 1.4.3 was updated to cite the Health and Social Care Safety and Quality Act 2015. You can see these changes at www.nice.org.uk/cg138

Cover of Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services

Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms.

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9Continuity of care and relationships

9.1. Introduction

In this review we have conceptualised continuity of care according to the definitions provided in the 2010 King’s Fund report “continuity of care and the patient experience”24. Co-ordination of services is integral to this understanding. The types of continuity outlines are:

Relationship continuity: the ongoing therapeutic relationship with a healthcare professional.

Management continuity: continuous and consistent clinical management, including appropriate information transfer and care planning, as well as any necessary co-ordination of care required by the patient. This is relevant whenever a patient is receiving care from more than one clinician or provider.

Continuity of care is a concept relevant to all stages of the patient pathway and includes aspects of co-ordination, access or barriers to accessing services and the availability of services. There is potential overlap between continuity and the themes of treating the individual and responsiveness of services as services may need to respond to each individuals need for continuity. Continuity may rely on the development of good relationships and trust with health care professionals, which can take time to develop. Ensuring continuity of care in patients with multiple co-morbidities, as well as those who are aging or socially vulnerable, may be particularly important.

9.2. Evidence reviews and other inputs

Each of the following sources of evidence and information has been used to inform the recommendations on continuity of care and a discussion of this is presented in section 0.

9.2.1. Patient experience scoping study - a focused thematic qualitative overview review

The patient experience scoping study (see appendix B) identified continuity of care as a key theme in two of three therapy areas examined (cardiovascular disease and cancer). In the third, diabetes, continuity of care was a sub-theme within the key theme ‘Relationships/partnership’. The sub-themes found are outline in Table 12 below.

Table 12. Sub-themes for continuity from patient experience scoping study.

Table 12

Sub-themes for continuity from patient experience scoping study.

9.2.2. NHS surveys

NHS Surveys are used to assess patient experience, to examine how the NHS performs and to identify which aspects of patient experience are most important to patients. Further information on patient surveys is in Section 5.4.

Findings from a survey by the Picker Institute Europe of inpatients which asked patients to score the importance of 82 aspects of care (Boyd 20075) found that aspects relating to continuity of care were within the top ten. These were:

6.

The doctors know enough about my medical history and treatment.

7.

The nurses know enough about my medical history and treatment.

Secondary analysis of NHS surveys of inpatient and outpatient care was carried out to develop ‘core domains’112,113. The questions that particularly contributed to the domain ‘Consistency and coordination’ for inpatients are listed below. In addition for outpatients, there were questions related to continuity of care listed as particularly contributing to the domain ‘Information as discharge’ and ‘Doctors’. These questions are listed below.

Consistency and co-ordination (domain for inpatients)

Did members of staff say different things?

How would you rate how well the doctors and nurses worked together?

Information as discharge (domain for outpatients)

Did a member of staff tell you who to contact if you were worried about your condition or treatment after you left hospital?

Doctors (domain for outpatients)

Did the doctor seem aware of your medical history?

9.2.3. Existing NICE recommendations

The following recommendations pertaining to continuity of care were identified in recent NICE guidelines (see Appendix C for the full list of recommendations in all areas relating to Patient Experience) and used to inform recommendations pertaining to patient experience in general terms.

  • At the booking appointment, give the woman a telephone number to enable her to contact a healthcare professional outside of normal working hours, for example the telephone number of the hospital triage contact, the labour ward or the birth centre.
    (From ‘Pregnancy and complex social factors’, R 1.1.13)85
  • Work with social care professionals to overcome barriers to care for women who misuse substances. Particular attention should be paid to:
    • integrating care from different services
    • ensuring that the attitudes of staff do not prevent women from using services
    • addressing women’s fears about the involvement of children’s services and potential removal of their child, by providing information tailored to their needs
    • addressing women’s feelings of guilt about their misuse of substances and the potential effects on their baby.
      (From ‘Pregnancy and complex social factors’, R 1.2.1)85
  • Healthcare commissioners and those responsible for providing local antenatal services should work with local agencies, including social care and third-sector agencies that provide substance misuse services, to coordinate antenatal care by, for example:
    • jointly developing care plans across agencies
    • including information about opiate replacement therapy in care plans
    • co-locating services
    • offering women information about the services provided by other agencies.
      (From ‘Pregnancy and complex social factors’, R 1.2.2)85
  • Offer the woman a named midwife or doctor who has specialised knowledge of, and experience in, the care of women who misuse substances, and provide a direct-line telephone number for the named midwife or doctor.
    (From ‘Pregnancy and complex social factors’, R 1.2.4)85
  • Use a variety of methods, for example text messages, to remind women of upcoming and missed appointments.
    (From ‘Pregnancy and complex social factors’, R 1.2.8)85
  • The named midwife or doctor should tell the woman about relevant additional services (such as drug and alcohol misuse support services) and encourage her to use them according to her individual needs.
    (From ‘Pregnancy and complex social factors’, R 1.2.9)85
  • At the booking appointment discuss with the woman the importance of keeping her hand-held maternity record with her at all times.
    (From ‘Pregnancy and complex social factors’, R 1.3.8)85
  • Offer the young woman aged under 20 a named midwife, who should take responsibility for and provide the majority of her antenatal care, and provide a direct-line telephone number for the named midwife.
    (From ‘Pregnancy and complex social factors’, R 1.4.4)85
  • Offer patients the opportunity to see the same specialist healthcare team more than once to agree treatment.
    (From ‘Barrett’s oesophagus - ablative therapy’, R 1.1.11)91
  • Every hospital with a cancer centre or unit should assign a CUP specialist nurse or key worker to patients diagnosed with MUO or CUP. The CUP specialist nurse or key worker should:
    • take a major role in coordinating the patient’s care in line with this guidance
    • liaise with the patient’s GP and other community support services
    • ensure that the patient and their carers can get information, advice and support about diagnosis, treatment, palliative care, spiritual and psychosocial concerns.
    • meet with the patient in the early stages of the pathway and keep in close contact with the patient regularly by mutual agreement and
    • be an advocate for the patient at CUP team meetings.
      (From ‘Metastatic malignant disease of unknown primary origin’, R 1.1.1.3)67
  • Refer outpatients with MUO to the CUP team immediately using the rapid referral pathway for cancer, so that all patients are assessed within 2 weeks of referral. A member of the CUP team should assess inpatients with MUO by the end of the next working day after referral. The CUP team should take responsibility for ensuring that a management plan exists which includes:
    • appropriate investigations
    • symptom control
    • access to psychological support and
    • providing information.
      (From ‘Metastatic malignant disease of unknown primary origin’, R 1.1.1.4)67
  • Healthcare professionals involved in the care of patients with advanced breast cancer should ensure that the organisation and provision of supportive care services comply with the recommendations made in ‘Improving outcomes in breast cancer: manual update’ (NICE cancer service guidance [2002]) and ‘Improving supportive and palliative care for adults with cancer’ (NICE cancer service guidance [2004]), in particular the following two recommendations:
    • ‘Assessment and discussion of patients’ needs for physical, psychological, social, spiritual and financial support should be undertaken at key points (such as diagnosis; at commencement, during, and at the end of treatment; at relapse; and when death is approaching).’
    • ‘Mechanisms should be developed to promote continuity of care, which might include the nomination of a person to take on the role of “key worker” for individual patients.’ (Breast cancer – advanced’, R 1.4.1)65
  • All patients with breast cancer should be assigned to a named breast care nurse specialist who will support them throughout diagnosis, treatment and follow-up.
    (From ‘Breast cancer – early and locally advanced’, R 1.2.2)66
  • Offer people with Rheumatoid Arthritis an annual review to:
    • assess disease activity and damage, and measure functional ability (using, for example, the Health Assessment Questionnaire [HAQ])
    • check for the development of comorbidities, such as hypertension, ischaemic heart disease, osteoporosis and depression
    • assess symptoms that suggest complications, such as vasculitis and disease of the cervical spine, lung or eyes
    • organise appropriate cross referral within the multidisciplinary team
    • assess the need for referral for surgery (see section 1.6)
    • assess the effect the disease is having on a person’s life.
      (From ‘Rheumatoid arthritis’, R 1.5.1.4)72
  • People with Rheumatoid Arthritis should have access to a named member of the multidisciplinary team (for example, the specialist nurse) who is responsible for coordinating their care.
    (From ‘Rheumatoid arthritis’, R 1.3.1.2)72
  • Offer people with satisfactorily controlled established Rheumatoid Arthritis review appointments at a frequency and location suitable to their needs. In addition, make sure they:
    • have access to additional visits for disease flares,
    • know when and how to get rapid access to specialist care, and
    • have ongoing drug monitoring.
      (From ‘Rheumatoid arthritis’, R 1.5.1.3)72
  • To ensure continuity of care, healthcare professional(s) with the appropriate competencies
    • Ensure the short-term and medium-term rehabilitation goals are reviewed, agreed and updated throughout the patient’s rehabilitation care pathway. should coordinate the patient’s rehabilitation care pathway. Key elements of the coordination are as follows.
    • Ensure the delivery of the structured and supported self-directed rehabilitation manual, when applicable.
    • Liaise with primary/community care for the functional reassessment at 2–3 months after the patient’s discharge from critical care.
    • Ensure information, including documentation, is communicated between hospitals and to other hospital-based or community rehabilitation services and primary care services.
    • Give patients the contact details of the healthcare professional(s) on discharge from critical care, and again on discharge from hospital.
      (From ‘Critical illness rehabilitation’, R 1.1.1)88
  • Ensure that the transfer of patients and the formal structured handover of their care are in line with ‘Acutely ill patients in hospital’ (NICE clinical guideline 50). This should include the formal handover of the individualised, structured rehabilitation programme.
    (From ‘Critical illness rehabilitation’, R 1.1.12)88
  • Give patients the following information before, or as soon as possible after, their discharge from critical care. Also give the information to their family and/or carer, unless the patient disagrees.
    • Information about the rehabilitation care pathway.
    • Information about the differences between critical care and ward-based care. This should include information about the differences in the environment, and staffing and monitoring levels.
    • Information about the transfer of clinical responsibility to a different medical team (this includes information about the formal structured handover of care recommended in ‘Acutely ill patients in hospital’ (NICE clinical guideline 50).
    • If applicable, emphasise the information about possible short-term and/or long-term physical and non-physical problems that may require rehabilitation.
    • If applicable, information about sleeping problems, nightmares and hallucinations and the readjustment to ward-based care.
      (From ‘Critical illness rehabilitation’, R 1.1.13)88
  • Give patients the following information before their discharge to home or community care. Also give the information to their family and/or carer, if the patient agrees.
    • Information about their physical recovery, based on the goals set during ward-based care if applicable.
    • If applicable, information about diet and any other continuing treatments.
    • Information about how to manage activities of daily living including self-care and re-engaging with everyday life.
    • If applicable, information about driving, returning to work, housing and benefits.
    • Information about local statutory and non-statutory support services, such as support groups.
    • General guidance, especially for the family and/or carer, on what to expect and how to support the patient at home. This should take into account both the patient’s needs and the family’s/carer’s needs.
    • Give the patient their own copy of the critical care discharge summary.
      (From ‘Critical illness rehabilitation’, R 1.1.22)88
  • Antenatal care should be provided by a small group of healthcare professionals with whom the woman feels comfortable. There should be continuity of care throughout the antenatal period.
    (From ‘Antenatal care’, R 1.2.2.1)80
  • A system of clear referral paths should be established so that pregnant women who require additional care are managed and treated by the appropriate specialist teams when problems are identified.
    (From ‘Antenatal care’, R 1.2.2.2)80
  • Women with diabetes who are planning to become pregnant should be advised:
    • that the risks associated with pregnancies complicated by diabetes increase with the duration of diabetes
    • to use contraception until good glycaemic control (assessed by HbA1c2
    • that glycaemic targets, glucose monitoring, medications for diabetes (including insulin regimens for insulin-treated diabetes) and medications for complications of diabetes will need to be reviewed before and during pregnancy ) has been established
    • that additional time and effort is required to manage diabetes during pregnancy and that there will be frequent contact with healthcare professionals. Women should be given information about the local arrangements for support, including emergency contact numbers.
      (From ‘Diabetes in pregnancy’, R 1.1.1.2)81
  • In order to encourage the person to participate in reducing their CVD risk, the healthcare professional should:
    • find out what, if anything, the person has already been told about their CVD risk and how they feel about it
    • explore the person’s beliefs about what determines future health (this may affect their attitude to changing risk)
    • assess their readiness to make changes to their lifestyle (diet, physical activity, smoking and alcohol consumption), to undergo investigations and to take medication
    • assess their confidence in making changes to their lifestyle, undergoing investigations and taking medication
    • inform them of potential future management based on current evidence and best practice
    • involve them in developing a shared management plan
    • check with them that they have understood what has been discussed.
      (from ‘Lipid modification’, R 1.2.5)77
  • A young person with ADHD receiving treatment and care from CAMHS or paediatric services should be reassessed at school-leaving age to establish the need for continuing treatment into adulthood. If treatment is necessary, arrangements should be made for a smooth transition to adult services with details of the anticipated treatment and services that the young person will require. Precise timing of arrangements may vary locally but should usually be completed by the time the young person is 18 years.
    (From ‘Attention deficit hyperactivity disorder’, R 1.6.1.1)73

9.2.4. Literature review

9.2.4.1. What is the effectiveness of interventions to improve the continuity of care of patients in the National Health Service?

9.2.4.2. Clinical evidence

We searched for systematic reviews of RCTs and/or cohort studies assessing the effectiveness of interventions that might be applied to operationalise continuity of care with patient-focussed outcomes (for example: key workers, hand-held records, etc). The approach to searching and selection of interventions was deliberately kept broad in the hope the literature was well organised with patient-focussed outcomes that we could examine across as many interventions as possible in the time available to support guidance recommendations. Systematic reviews of efficacy data on nurse-led care, team-based interventions, the role of the pharmacist, discharge arrangements, shared care, midwife-led care, and nursing record systems were found. Most of these interventions were multifaceted and complex models of care with few patient-focussed outcome measures.

Midwife-led care was selected for review as there was a clear mechanism for operationalising continuity of care in that clinical area that was well defined in the literature. The applicability and transferability of these findings for a generic guidance would then be considered by the Guidance Development Group. It was not possible to conduct a review across all clinical areas to identify all potentially relevant studies and so mid-wife led care was viewed as a good proxy area which was likely to include many generic components. The aim of this review was to identify components of care that specifically improve continuity that could be generalised across disease areas.

One systematic review/meta-analysis by Devane 201116 that compared midwife-led models of care with other models of care for childbearing women and their infants was found. The systematic review was of good quality and included 17 RCTs (for details of the review and included studies, see Appendix F). See Table 13 for a summary of the primary results.

Table 13. Results of midwife-led models versus other models of care for childbearing women and their infants.

Table 13

Results of midwife-led models versus other models of care for childbearing women and their infants.

9.2.4.3. Economic evidence

The approach taken to the economic literature review was to undertake targeted searches following the identification of specific interventions in the clinical review of systematic reviews. A search was therefore undertaken to look to economic evaluations about mid-wife led care compared to other models of maternity care.

Five studies were included that examined costs or outcomes of midwife-led care versus usual care4,32,34,109,127. These are summarised in the economic evidence profile in Table 14. See also the full study evidence tables in Appendix G.

Table 14. Economic evidence profile – midwife-led care versus usual care.

Table 14

Economic evidence profile – midwife-led care versus usual care.

Three potentially includable economic analyses were excluded due to either being judged not applicable to the current NHS or having very serious methodological limitations6,16,22.

9.2.4.4. Evidence statements

ClinicalOne systematic review16 found evidence of benefit and an absence of evidence of harm for midwife-led models of care for childbearing women. Midwife-led care was shown to significantly increase continuity of care (as defined by attendance at birth by known midwife).
EconomicOf five within-RCT cost consequence analyses (Begley 20094, Homer 200132, Hundley 199534, Rowley 1995109, Young 1997127 – all partially applicable, potentially serious limitations), three found that average costs per person were reduced with midwife-led care (−£76 to −£438), and two found that costs were modestly increased (£6.5 to £40.71), with benefits to patients such as higher satisfaction and reduced intervention rates. Statistical significance of cost differences was not assessed.

9.3. Recommendations and link to evidence

Recommendations
34.

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.

35.

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.

36.

Ensure clear and timely exchange of patient information:

  • between healthcare professionals (particularly at the point of any transitions in care)
  • between healthcare and social care professionals (with the patient’s consent).
37.

All healthcare professionals directly involved in a patient’s care should introduce themselves to the patient.

38.

Inform the patient about:

  • who is responsible for their care and treatment
  • the roles and responsibilities of the different members of the healthcare team
  • the communication about their care that takes place between members of the healthcare team.
39.

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.

Relative values of different outcomesThe GDG considered continuity of care important to patients as identified by NHS survey, framework analysis and consensus.
Continuity of care can mean a number of different things to people. The 2010 King’s Fund report24 defines continuity of care as constituting both “relationship continuity” (a continuous therapeutic relationship with a clinician) and “management continuity” (continuity and consistence of clinical management, including providing and sharing information and care planning, and any necessary co-ordination of care required by the patient).
The GDG noted that few continuity of care outcomes had been reported and where they were, they focussed on a single aspect of continuity, for example, chronology of a patient's contact with healthcare providers over time, or relationship continuity only.
Outcome data from the included review of midwife-led care evaluated the intervention, including a crude measure of continuity of care, but did not examine what things about continuity of care specifically impacted outcome.
Trade off between clinical benefits and harmsThe GDG considered the importance of continuity of care in relation to patient experience and discussed how there is often a trade-off between rapid access to care and seeing a healthcare worker of their choice. The GDG agreed the importance of different aspects of continuity of care might vary according to a patient’s personal circumstances and that they should be given the choice to decide what is best for them.
The GDG considered midwife-led care as an example of an intervention that improves continuity of care, that has good evidence of benefit and an absence of evidence of harm. They highlighted how the 2008 Cochrane report on Midwife-led care29 reported greater levels of maternal satisfaction associated with this model of care.
The GDG considered the existing recommendations pertaining to continuity of care from published NICE guidelines. They discussed how a number of the recommendations were based on evidence reviews from specific disease areas and may not be suitable for generalising across all settings and populations (for example key workers such as breast cancer nurses and named mid-wives for women with complex social factors). The GDG agreed these recommendations highlighted key themes that were generic to all patient experience of continuity of care:
  • Continuity of care can mean different things to different people and what is important for one person may not be for another, nor consistently important in all circumstance (for example, a patient might prefer rapid access to care as opposed to seeing their usual clinician of choice).
  • The communication and transfer of information between clinicians managing care, healthcare services (such as secondary to primary care), and to the patient themselves is imperative to ensuring continuity of care. They acknowledged sometimes discontinuity of care is inevitable (for example: discharge is done by another clinician), but the key is to ensure information is exchanged smoothly at the point of handover process, and there is consistency of understanding in order to mitigate against discontinuity of care.
Economic considerationsImproving continuity of care for patients may require an investment in developing systems that facilitate this. However, midwife-led care illustrates that an alternative model of care that offers more continuity of care does not necessary mean increased costs. Providing patients with better continuity of care may result is other benefits to the health service – better coordinated care may be more efficient and so save money in the long term. For example, the GDG were aware of an economic analysis commissioned by the department of health regarding providing one-to-one support for cancer patients with the aim of improving continuity of care that suggested that additional costs were likely be offset by cost savings due to improvements in quality and coordination of care25.
Providing patients with information about who was responsible for their care and who to contact under different circumstances was considered to have minimal resource implications. In addition it may have cost savings if people access healthcare more appropriately; for example if they contact an assigned nurse instead of going to A&E.
Quality of evidenceContinuity of care is an important theme in patient experience as indicated by the review of patient frameworks, the patient experience scoping study, information from NHS surveys and the GDG.
The systematic review on midwife-led care was of good methodological quality. The review assumed midwife-led care assumed enduring contact with a provider is linked to stronger relationships, better information transfer and more consistent management. It did not test this association directly.
Other considerationsThe GDG considered how interventions to improve continuity of care are often complex and multifaceted, and combine components such as interdisciplinary care, education and involvement in decision-making, implementation of care plans, assessment of care needs and integration of care as a person transits through the health system.
The approach to this review was iterative and aimed to identify as much relevant literature by adopting a broad search strategy and focussing only on systematic reviews. When considering the interventions that were found (for example, discharge planning, shared care and nursing records) it was difficult to identify key factors/facilitators of continuity of care that improved outcome, as the associations were not directly tested and definitions varied across studies. Midwife-led care was chosen for further consideration as it is thought to enable both relationship (i.e. known carer) and management continuity (for example, coordination of care) and the definition of continuity of care was clear. The review did not reveal key facilitators for continuity of care that can be generalised across disease areas so recommendations were based on the GDG’s professional and personal experiences.
The GDG acknowledge the limitations of their search which was based on continuity of care terms, meaning all papers retrieved must have mentioned continuity of care in their title/abstract. Searches were not conducted for specific interventions and we excluded qualitative literature.
In general the GDG noted little attention has been given to the patient’s perspective on continuity of care but considered it key to a good patient experience based on the information found in the NHS survey and GDG consensus. More research is needed that focuses on continuity of care using outcomes that are important to patients.
Members of the GDG discussed their experiences of visiting multiple healthcare providers for the care of comorbidites and how important it was that information was effectively exchanged between these services as well as the relevant healthcare professionals. Patient with co-morbidities also often receive multiple appointments which conflict or result in them having to visit the same centre multiple times. The GDG recognised the difficult in co-ordination across specialities but considered that the impact on patient experience of a lack of co-ordination is unacceptable. Prioritisation may also be required to individualise care for patients with multiple problems. The GDG discussed the importance of building relationships with a usual professional who can help to coordinate care and relate to them as an individual who is experiencing their condition in a unique way.
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