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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.)

3Methods

3.1. Overview of approach to guidance development

In developing this guidance, a pragmatic approach was taken to ensure that the guidance development group had multiple sources of evidence/information (see Figure 1 for a graphical representation) in order to establish what is important to patients when considering their experience of healthcare.

Figure 1. Guidance inputs and outputs.

Figure 1

Guidance inputs and outputs.

In shaping this work, key sources were:

  1. Review of existing patient experience frameworks
  2. A Patient Experience Scoping Study – a focussed thematic qualitative overview of literature in three disease areas. The aim of the study was to identify key themes/subthemes important to patients in relation to their experience of healthcare.
  3. Review of NHS survey results
  4. Review of existing NICE recommendations related to patient experience
  5. Systematic reviews of the literature on prioritised topic areas

Drafting of recommendations took into account:

  • Existing NICE recommendations related to patient experience
  • Selected systematic literature reviews for specific interventions that may improve patient experience
  • GDG consensus

Drafting quality standards

  • The GDG prioritised key areas and drafted quality statements

The methods used to identify the information described above are detailed in the subsequent sections.

3.1.1. Incorporating economic considerations

In NICE guidelines the GDG are asked to take into account both the clinical and cost effectiveness of interventions. Recommendations should be based on the estimated costs of the treatment strategies in relation to their expected health benefits (that is, their ‘cost effectiveness’), rather than on the total cost or resource impact of implementing them. Health benefits are usually considered in terms of ‘quality-adjusted life years (QALYs)’. The aim of considering cost effectiveness in clinical guidelines is to maximise the health of the population as a whole using available NHS resources.

On the costs side, conventional methods may be applicable to this guidance, since there may be staff time and other costs associated with improving patient experience. Initial costs may be offset by cost savings, for example if providing patients with appropriate information means that people know to call their assigned nurse when new symptoms emerge rather than attending an accident and emergency unit when symptoms have worsened.

However, in regards to effectiveness there are some additional complexities compared to a standard clinical guideline. While in some cases interventions that improve patient experience may improve ‘health’ as quantified by QALYs, there is clearly a minimum expectation of what type of patient experience is acceptable, which is not necessarily to do with improving ‘health’. For example, a patient and their family have a right to information about their condition and the potential harms and benefits of the treatment they will receive but the aim of this information is not necessarily to improve health. Therefore the quality-adjusted life-year will not capture all the benefits of improved patient experience and it is appropriate to take into account other considerations.

In development of this guidance when quantitative clinical evidence for specific interventions to improve patient experience was identified by a systematic review, evidence of cost effectiveness was also sought (see Section 3.6.4). Consideration was given to undertaking a new cost-effectiveness analysis but it was decided that this would not be useful due to the broad range of interventions and populations. For all areas of the guidance, the GDG was asked to consider whether there was a potential cost implication to their recommendations and whether they considered that the benefits to patients would be large enough to justify any additional costs.

3.2. Existing patient experience frameworks

See Chapter 5 for details of how existing patient experience frameworks were identified and used in the guidance.

3.3. Patient experience scoping study - a focused thematic qualitative

A focused thematic qualitative overview of the literature on patient experience was conducted by the University of Warwick. The NCGC commissioned this work and agreed for the focus of the evidence synthesis to be in core condition areas with high burden of disease impact, by nature including both acute and chronic conditions in adult healthcare. Meta-synthesis of this data produced high level themes which inform the structuring of this guidance. Full methods are described in the full technical report included in Appendix B.

3.4. NHS surveys

See Chapter 5 for details of how NHS survey data fed into the guidance.

3.5. Existing NICE recommendations

NICE guideline recommendations are developed by guideline development groups and subject to public consultation before publication. Recommendations from published guidelines considered relevant to patient experience were extracted from existing Clinical and Cancer Care guidelines published between the 1st January 2008 and 26th January 2011. Only recommendations relevant to adults were considered for inclusion. Recommendations from guidance produced by the National Collaborating Centre for Mental Health, Public Health, Technology Appraisals, Interventional Procedures, and Diagnostic programme at NICE were excluded from review.

After each recommendation was identified from the NICE version of the guideline, the full text guideline was reviewed to determine whether the recommendation was derived from an evidence review or guideline development group consensus. Where no details were given it was assumed the recommendation was based on guideline development group consensusa. Some recommendations were noted as being ‘consensus based on evidence ‘, meaning there was an issue or barrier identified but no evidence found about how to overcome this. ‘

As there was considerable overlap in the themes identified in these recommendations, we did not search guidelines published before January 2008 because we believed we had achieved ‘saturation’ i.e. there were no new themes emerging that could be used to inform new recommendations on patient experience. Recommendations regarded as potentially applicable to the patient experience guidance were then selected by the Patient Experience guidance development group and adapted using group consensus or evidence to make them transferable across disease populations and non-setting specific.

3.6. Systematic literature reviews

A number of possible topics for review that were based on the themes identified in the qualitative narrative review, recommendations from existing NICE guidance, and those considered important by members of the group based on their experience, were considered. Given the short time frame in which to complete the reviews, the GDG gave priority to topics they believed were underpinned by an evidence base to maximise the use of available resources.

A limited number of systematic literature reviews were undertaken in the areas prioritised by the GDG. Reviews were undertaken in accordance with the methods outlined in the NICE Guidelines Manual 200989.

3.6.1. Developing the review questions

Review questions were developed in a PICO framework (patient, intervention, comparison and outcome) for intervention reviews. This was to guide the literature searching process and to facilitate the development of recommendations by the GDG. They were drafted by the NCGC technical team and validated by the GDG. Full review protocols are available in Appendix D.

Table 1Review questions and outcomes

ChapterReview questions
9What is the effectiveness and cost-effectiveness of interventions to improve the continuity of care* of patients in the National Health Service?
10What is the effectiveness and cost-effectiveness of decision aids versus no intervention, usual care, alternative interventions, or a combination?
10What methods of presenting information improve a patient’s understanding of the risks and benefits associated with their treatment options?
10What generic components of patient education programmes^ improve patient experience?
*

We initially aimed to identify evidence for any intervention that might be applied to operationalise continuity of care (for example: key workers, hand-held records, etc). However due to complexities with the evidence identified and the time constraints of development, midwife-led care was selected for full review as there was a clear mechanism for operationalising continuity of care in that clinical area that was well defined in the literature. The aim of this review was to see if components of care could be identified that specifically improve continuity and could be generalised across disease areas.

^

Recent NICE guidelines have made a number of recommendations about education programmes for specific conditions. The GDG considered that patient education programmes had an important role to play in certain conditions where they had been implemented following consideration of the evidence on effective and cost effective. However, it was noted that outcomes were likely to vary by specific intervention and specific condition (for example, people with more severe conditions may be more willing to make behavioural changes) and so this consideration was best retained within condition-specific guidelines. This review aimed to examine whether there was evidence about effectiveness of different generic components of education programmes for improving outcome. Cost effectiveness evidence was not sought as analyses would not be performed for generic components and disease specific analyses would not be generalisable.

3.6.2. Searching for evidence

3.6.2.1. Clinical literature search

Systematic literature searches were undertaken to identify evidence within published literature in order to answer the review questions for continuity of care, risk communication and patient education programmes as per The Guidelines Manual 200989. No search was taken for the review question on patient decision aids as we accepted the 2011 Stacey Cochrane review as is with its search cut-off December 2009. Clinical databases were searched using relevant medical subject headings, free-text terms and study type filters where appropriate. Studies published in languages other than English were not reviewed. Where possible, searches were restricted to articles published in English language. All searches were conducted on core databases, MEDLINE, Embase, Cinahl and The Cochrane Library. The additional subject specific database PsychInfo was also used. All searches were updated on 9th May 2011. No papers after this date were considered.

Search strategies were checked by looking at reference lists of relevant key papers, checking search strategies in other systematic reviews and asking the GDG for known studies. The questions, the study types applied, the databases searched and the years covered can be found in Appendix E.

3.6.2.2. Health economic literature search

Systematic literature searches were also undertaken to identify health economic evidence within published literature relevant to the identified areas of decision aids and midwife-led care. The evidence was identified by conducting a broad search relating to the topic areas in the NHS economic evaluation database (NHS EED), the Health Economic Evaluations Database (HEED) and health technology assessment (HTA) databases with no date restrictions. Additionally, the search was run on MEDLINE and Embase, with a specific economic filter, from 2010, to ensure recent publications that had not yet been indexed by these databases were identified. Studies published in languages other than English were not reviewed. Where possible, searches were restricted to articles published in English language.

The search strategies for health economics are included in Appendix E. All searches were updated on 10th May 2011. No papers published after this date were considered.

3.6.3. Evidence of effectiveness

The research fellow:

  • Identified potentially relevant studies for each review question from the relevant search results by reviewing titles and abstracts – full papers were then obtained.
  • Reviewed full papers against pre-specified inclusion/exclusion criteria to identify studies that addressed the review question in the appropriate population and reported on outcomes of interest (review protocols are included in Appendix D).
  • Critically appraised relevant studies using the appropriate checklist as specified in The Guidelines Manual89.
  • Extracted key information about the study’s methods and results into evidence tables (evidence tables are included in Appendix F).
  • Generated summaries of the evidence (included in the relevant chapter write-ups)

3.6.3.1. Inclusion/exclusion

See the review protocols in Appendix D for full details.

3.6.4. Evidence of cost-effectiveness

The health economist:

  • Identified potentially relevant studies for each review question from the economic search results by reviewing titles and abstracts – full papers were then obtained.
  • Reviewed full papers against pre-specified inclusion/exclusion criteria to identify relevant studies (see below for details).
  • Critically appraised relevant studies using the economic evaluations checklist as specified in The Guidelines Manual89.
  • Extracted key information about the study’s methods and results into evidence tables (evidence tables are included in Appendix G).
  • Generated summaries of the evidence in NICE economic evidence profiles (included in the relevant chapter write-ups) – see below for details.

3.6.4.1. Inclusion/exclusion

Full economic evaluations (studies comparing costs and health consequences of alternative courses of action: cost–utility, cost-effectiveness, cost-benefit and cost-consequence analyses) and comparative costing studies that addressed the review question in the relevant population were considered potentially applicable as economic evidence.

Studies that only reported cost per hospital (not per patient), or only reported average cost effectiveness without disaggregated costs and effects, were excluded. Abstracts, posters, reviews, letters/editorials, foreign language publications and unpublished studies were excluded. Studies judged to had an applicability rating of ‘not applicable’ were excluded (this included studies that took the perspective of a non-OECD [Organisation for Economic Co-operation and Development] country).

Remaining studies were prioritised for inclusion based on their relative applicability to the development of this guidance and the study limitations. For example, if a high quality, directly applicable UK analysis was available other less relevant studies may not have been included. Where exclusions occurred on this basis, this is noted in the relevant section.

For more details about the assessment of applicability and methodological quality see the economic evaluation checklist (The Guidelines Manual, Appendix H89 and the health economics research protocol in Appendix D.

3.6.4.2. NICE economic evidence profiles

The NICE economic evidence profile has been used to summarise cost and cost-effectiveness estimates. The economic evidence profile shows, for each economic study, an assessment of applicability and methodological quality, with footnotes indicating the reasons for the assessment. These assessments were made by the health economist using the economic evaluation checklist from The Guidelines Manual, Appendix H89. It also shows incremental costs, incremental outcomes (for example, QALYs) and the incremental cost-effectiveness ratio from the primary analysis, as well as information about the assessment of uncertainty in the analysis. See Table 2 for more details.

Table 2. Content of NICE economic profile.

Table 2

Content of NICE economic profile.

If a non-UK study was included in the profile, the results were converted into pounds sterling using the appropriate purchasing power parity101.

3.6.4.3. Cost-effectiveness criteria

NICE’s report ‘Social value judgements: principles for the development of NICE guidance’ sets out the principles that GDGs should consider when judging whether an intervention offers good value for money86.

In general, an intervention was considered to be cost effective if either of the following criteria applied (given that the estimate was considered plausible):

  1. The intervention dominated other relevant strategies (that is, it was both less costly in terms of resource use and more clinically effective compared with all the other relevant alternative strategies), or
  2. The intervention cost less than £20,000 per quality-adjusted life-year (QALY) gained compared with the next best strategy.

If the GDG recommended an intervention that was estimated to cost more than £20,000 per QALY gained, or did not recommend one that was estimated to cost less than £20,000 per QALY gained, the reasons for this decision are discussed explicitly in the ‘from evidence to recommendations’ section of the relevant chapter with reference to issues regarding the plausibility of the estimate or to the factors set out in the ‘Social value judgements: principles for the development of NICE guidance’86.

3.7. Developing recommendations

Over the course of the guidance development process, the GDG was presented with:

  • The patient experience scoping study – a focused thematic qualitative overview, undertaken by Warwick University (Appendix B).
  • A table of existing NICE published recommendations from existing Clinical and Cancer Care guidelines published between the 1st January 2008 and 26th January 2011 (Appendix C).
  • Evidence tables of the clinical and economic evidence reviewed from the literature. All evidence tables are in Appendices F and G.
  • Summary of clinical and economic evidence and quality (as presented in Chapters 9 and 10).

Recommendations were drafted on the basis of the GDG interpretation of the available evidence, taking into account the balance of benefits, harms, and costs. When clinical and economic evidence was of poor quality, conflicting or absent, the GDG drafted recommendations based on their expert opinion. The considerations for making consensus based recommendations include the balance between potential harms and benefits, economic or implications compared to the benefits, current practices, recommendations made in other relevant guidelines, patient preferences and equality issues. The consensus recommendations were done through discussions in the GDG. The main considerations specific to each recommendation are outlined in the link from evidence to recommendation sections in each chapter.

3.8. Validation process

The guidance is subject to a four week public consultation and feedback as part of the quality assurance and peer review the document. All comments received from registered stakeholders are responded to in turn and published on the NICE website.

3.9. Updating the guidance

Following publication, and in accordance with the NICE guidelines manual, NICE will ask a National Collaborating Centre or the National Clinical Guideline Centre to advise NICE’s Guidance executive whether the evidence base has progressed significantly to alter the guidance recommendations and warrant an update.

3.10. Disclaimer

Health care providers need to use clinical judgement, knowledge and expertise when deciding whether it is appropriate to apply guidances. The recommendations cited here are a guide and may not be appropriate for use in all situations. The decision to adopt any of the recommendations cited here must be made by the practitioners in light of individual patient circumstances, the wishes of the patient, clinical expertise and resources.

The National Clinical Guideline Centre disclaims any responsibility for damages arising out of the use or non-use of this guidance and the literature used in support of this guidance.

3.11. Funding

The National Clinical Guideline Centre was commissioned by the National Institute for Health and Clinical Excellence to undertake the work on this guidance.

Footnotes

a

For details about the consensus process used by these groups, please refer to the methodology section of the original full guideline.

Copyright © 2012, National Clinical Guideline Centre.

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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.
NICE Clinical Guidelines, No. 138.
National Clinical Guideline Centre (UK).

NICE (National Institute for Health and Care Excellence)

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