Background

Chronic Obstructive Pulmonary Disease (COPD) is a progressive respiratory condition affecting a substantial and growing number of people, and at a high cost to the NHS. Managed predominantly in primary care, symptom burden is high in advanced COPD and the burden on informal carers considerable. There are known unmet care and support needs in advanced COPD and the barriers to identifying and meeting them need addressing. Health service contacts are predominantly reactive and brief, with the care and support element of contacts invisible to some patients.

These contacts are largely driven by organisational and medical agendas leaving limited opportunities to identify and meet patient support needs. Further, patients’ ability to articulate need is limited: health care professionals cannot rely on patients to spontaneously report their needs. A brief patient-completed evidence-based tool to identify areas of support need could overcome these barriers, facilitating need-articulation and identification. This study developed such a tool for patients with advanced COPD, suitable for use in primary care clinical practice, grounded in evidence from an established mixed method dataset derived from a population-based cohort of patients with advanced COPD. Its development was modelled on a successful tool developed to identify areas of support needs for carers: the Carer Support Needs Assessment Tool (CSNAT)1.

Project objectives

Research Questions 

• What are the patient-identified domains of support need in advanced COPD?
• Can we develop a patient-completed support needs tool for use in primary care based on these patient-identified support domains?

Objectives for RQ2 (Domain Identification)

• To complete a rapid narrative review of patient support needs in advanced COPD
• to conduct further analysis of an established population-based mixed method dataset to identify support needs in advanced COPD
• to develop a typology of support needs in advanced COPD based on the rapid review and further analysis
• to establish the completeness of the typology of support needs through focus groups with patients with advanced COPD and their carers.

Objectives for RQ2 (Tool Development)

• To draft a patient-completed support needs tool for use in primary care based on the refined typology of support needs
• to iteratively refine the tool in stakeholder workshops to ensure acceptability and suitability of the layout, item wording, response categories, structure, introductory instructions and tool name
• to output an evidenced-based tool ready for validation for use in everyday primary care practice and annual reviews to proactively identify patient support needs, so facilitating person-centred care.

Changes to project objectives

No changes were made to the original outline.

Brief summary

Methods

First, an evidence-based typology of patient support needs in advanced COPD was developed through a rapid narrative literature review and further analysis of an existing dataset of mixed method patient and carer interviews. Typology comprehensiveness was checked in patient focus groups. The refined typology will provide domains of support need to inform the content of a draft tool. Stakeholder workshops then refined the tool, ensuring suitability for patients and health care professionals.

Findings against Objectives

To complete a rapid narrative review of patient support needs in advanced COPD

Guided by an information specialist (IK) we conducted a rapid narrative review of the literature to identify support needs in advanced COPD. The review followed the principles of a systematic review, with reference to PRISMA guidelines2, but incorporated limiters within the literature search and adopted streamlined processes to assess study inclusion.

In conducting similar work in relation to carers, Ewing and Grande1 described three types of data that may indicate support needs: carer support needs that were met, interventions that were perceived as helpful by carers, and shortfalls in provision where carer needs had not been met. These three types of data formed a framework for identifying relevant papers, and the relevant findings within them, in relation to patient support needs: patient support needs that were met, interventions that were perceived as helpful by patients, and shortfalls in provision where patient needs had not been met.

The review considered papers that explored patient perspectives of support need either as the main focus of the study, or within a wider discussion of patient need, or within the context of living with COPD. This therefore included studies with a qualitative or mixed methods research designs. Studies had to be primary research and be published in peer review journals between 1996 and February 2016, and be written in English.

A pilot search, extended electronic search and manual search was conducted generating 972 hits, reduced to 539 after duplicates removed. Titles and abstracts were screened by the lead reviewer (CG) and those not meeting the inclusion criteria were excluded by the lead reviewer only. Studies were included if they addressed key aspects of support as defined from the perspective of the patient. Two reviewers (CG/MF) independently reviewed the remaining abstracts for their relevance to the topic.  Discrepancies in reviewer selection were resolved  at a meeting between reviewers. Full copies of articles identified as being potentially relevant were obtained for further consideration and assessed for methodological validity by one reviewer (CG). Data extraction was then performed on the remaining 31papers.

Data extraction: Elements of support for patients that were described as being helpful or lacking were extracted from the included papers onto an Excel spreadsheet by the lead reviewer (CG). A random sample of these papers was also analysed by the second reviewer (MF) and disagreements on categorisation were resolved through discussion.

Data synthesis: Extracted data was organised into descriptive themes centred on broad areas of support need and reviewed and revised through team discussion (CG, MF, GE). These descriptive themes were then synthesised into three broader categories: patient support needs related to managing the physical nature of COPD, support needs related to the psychological impact of COPD, and support needs related to the wider social environment

 

To conduct further analysis of an established population-based mixed method dataset to identify support needs in advanced COPD

Twenty qualitative patient baseline interview transcripts were purposively sampled from the established Living with Breathlessness (LwB) Study dataset and analysed thematically (CG, MF), guided by the framework used in rapid review. The analysis identified a range of physical, psychological, and social support needs.

To develop a typology of support needs in advanced COPD based on the rapid review and further analysis of the LwB dataset.

The 18 broad domains of need from the rapid review were mapped to the range of physical, psychological, and social support needs identified through the further analysis of the LwB dataset and reviewed (MF, CG, GE). This process identified domains that could be further grouped, resulting in a comprehensive range of 16 evidence-based domains of support need for patients with advanced COPD. This typology was then applied to a further 20 purposively sampled LwB Study qualitative patient baseline interview transcripts (CG). No new domains of support need were identified (i.e. all could be classified under one of the existing 16 domains) and none of the 16 domains was redundant.

To establish the completeness of the typology of support needs through focus groups with patients with advanced COPD and their carers.

Three focus groups were conducted with patients and carers living with COPD recruited from primary care practices (n=4) and patient support groups (n=2) in the East of England. Focus groups were held in hotels in patients’ localities and lunch provided, and audio-recorded with permission. A total of 15 patients and carers participated. Focus group participants reviewed the list of evidence-based support domains for completeness, identifying key domains (and discussing why they were key). To enable participants to identify any missing domains they were asked important aspects of support they currently received, what additional support they would like, whether they had ever failed to get support, support that helped at critical times (e.g. during an exacerbation).

The focus group recordings were transcribed, checked and anonymised, then analysed using a framework approach. Patients and carers could identify with the evidence-based support domains and identified no new areas of support need that could not be categorised under the existing domains. They could envisage the potential for a tool based on the domains, to enable conversations with health care professionals about their needs.

To draft a patient-completed support needs tool for use in primary care based on the refined typology of support needs.

The comprehensive evidence-based domains of support need identified in Stage 1 were formulated into questions for inclusion on the draft SNAP tool: a set of questions for patients to consider in identifying their unmet support needs. The draft tool asked patients to consider whether they needed more support in relation to 18 broad areas (domains) of support need such as practical help in the home, knowing what to expect in the future, understanding their condition, getting out and about, and support for their carer. Three response categories were included (no, a little more, quite a bit more): this was informed by the development of the CSNAT1 which included a range of responses in preference to a yes/no dichotomy in order to encourage identification of need. The draft tool included simple instructions (two sentences: again modelled on CSNAT1) and given the draft title “How are you?”

To iteratively refine the tool in stakeholder workshops to ensure acceptability and suitability of the layout, item wording, response categories, structure, introductory instructions and tool name.

The draft tool was taken into stakeholder workshops with patients and carers (n=2 workshops involving 14 patients and carers in total), and clinicians (n=2 primary care workshops involving 10 clinicians [GPs and practice nurses], n=1 community respiratory care involving 5 clinicians). Patients and carers were recruited from British Lung Foundation Breathe Easy support groups. Recruitment of clinical teams was facilitated by CRN:Eastern and Cambridge & Peterborough NHS Trust. Workshops were audio-recorded, with permission.

At each workshop participants were given a short introduction to the rationale for the SNAP tool and approach, how the tool was developed and how the approach might work in clinical practice. They were asked to consider the relevance and comprehensiveness of the tool items (and, in particular, whether anything was missing), item wording, instructions, response categories, and working title. They were then asked to consider how it might work in practice (e.g. how it should be provided, by who, and when). HCPs were additionally asked to consider how SNAP might align with current practices.

 The stakeholder workshop recordings were transcribed, checked andanonymised, then analysed using a framework approach. 

Patients, carers and clinicians broadly endorsed the content and wording of the draft SNAP tool and the proposed Support Needs Approach for Patients which it underpins. Although the draft tool was contained within one side of A4, the length of the tool was a concern for some (usually clinicians) and suggestions were made for making the tool more inviting/patient- friendly (i.e. so that it looked less like a questionnaire). Some clinicians were concerned about how they would respond in cases where several unmet needs were identified (here, asking the patient to prioritise needs is key) and where the potential response to needs was beyond their expertise or remit (here, signposting or referral on is key). Clinician training will need to be a key component for implementation of the SNAP intervention.

Given the broad generic nature of the tool items a range of clinicians noted the potential relevance of the tool earlier in the COPD patient trajectory as well as with patients with other long term conditions e.g. diabetes. Clinicians in the Community Respiratory Team were particularly enthusiastic about the tool and approach, with some requesting to use it later the same day with patients (this was not possible given its draft nature).

To output an evidenced-based tool ready for validation for use in everyday primary care practice and annual reviews to proactively identify patient support needs, so facilitating person-centred care.

The draft SNAP tool and findings of the stakeholder workshops were reviewed by the study’s multi-disciplinary advisory group (10 clinical and academic members consulted) and PPI advisers. In a subsequent tool review meeting of the core study team (MF, CG, GE) each of the 16 tool items was checked for overlap and potential merging, in order to reduce the tool length whilst retaining comprehensiveness. Two items were merged, resulting in the final 15- item tool.

The design team from the Media Studio at Cambridge University Hospitals’ NHS Foundation Trust has been engaged on design work for the tool to make it more inviting/patient-friendly (less questionnaire).

Conclusions

This study has developed a 15-item evidenced-based tool ready for validation for use in everyday primary care practice and annual reviews to proactively identify patient support needs, so facilitating person-centred care. The SNAP tool has the potential to help patients with advanced COPD identify and express their support needs to clinicians in order to enable delivery of person-centred care. Future work will test the tool’s validity and feasibility of use in everyday clinical practice. Once validated the tool could be used in everyday clinical practice and annual reviews to proactively identify patient support needs, potentially ameliorating crises.

References

• Ewing G, Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for end-of-life-care practice at home: A qualitative study. Palliat Med 2010;27(3):244-56
• http://prisma-statement.org/ [accessed 31/10/2016]

Plain English summary

Chronic Obstructive Pulmonary Disease (COPD) is a long-term lung condition that shortens people’s lives. People with advanced COPD have severe breathlessness and face difficulties in daily living. It also affects family members and friends who provide care and support. We know that patients have unmet care and support needs in advanced COPD. We also know some of the reasons why these needs are unmet. Patients’ contacts with the health service are often brief and about responding to problems such as lung infections: they rarely provide opportunities to identify and discuss support needs. Even if there was more time for these 

conversations studies have found that patients have difficulty expressing their support needs: they are uncertain what they can ask about. Clinicians cannot rely on patients telling them their concerns.

If we provided patients with a brief tool to complete (a set of questions for patients to consider), it might act as a prompt, helping patients consider and express their support needs. The patient-completed tool could then be used by clinicians to start a conversation with the patient about their support needs and how they might be met. A similar tool developed for carers is being successfully used in clinical practice. This study developed such a tool for patients with advanced COPD using three types of information on support needs: (1) data already collected in interviews with advanced COPD patients, (2) findings of other studies of support need in advanced COPD and (3) new data from patient focus groups. We then worked with stakeholders (patients, carers, and clinicians) to ensure the tool was suitable for patients and for clinical practice.

These stakeholders broadly endorsed the content and wording of the tool and how it might work in practice. Many noted that the tool may be useful for patients with less severe COPD and for those with other long-term conditions (not just COPD). Helpful feedback enabled shortening of the tool and suggestions were made for making the tool more inviting (i.e. so that it looked less like a questionnaire). Some clinicians were concerned about how they would respond where patients identified several unmet needs and where the needs were beyond their expertise: developing clinician training will therefore be an important part of future work. By enabling conversations between patients and clinicians about support needs the tool could help avoid crises, which would help patients, carers, and the health service.

Dissemination

Published articles

Gardener AC, Ewing G, Farquhar M. Towards person-centred care: development of a patient support needs tool for patients with advanced Chronic Obstructive Pulmonary Disease (COPD) in primary care (poster with single slide). BTS winter meeting 2016 abstract. Thorax 2016 (in press)

Planned articles

Gardener AC, Ewing G, Khun I, Farquhar M. Patient support needs in advanced COPD: a rapid narrative review. (working title)

Gardener AC, Ewing G, Farquhar M. Development of a patient support needs tool for patients with advanced COPD. (working title)

Submitted peer-reviewed abstracts awaiting outcome (will be published if accepted): Gardener AC, Ewing G,Farquhar M. Tackling the rhetoric: an evidence-based support needs tool to enable supportive and palliative care in advanced non-malignant disease. EAPC 2017 abstract (awaiting outcome)

Peer reviewed presentations (unpublished)

Gardener AC, Ewing G, Farquhar M. Towards person-centred care: development of a patient support needs tool for patients with advanced Chronic Obstructive Pulmonary Disease (COPD) in primary care (poster).

Primary Care Respiratory Society (PCRS-UK 2016), Telford International Centre, 15th-16th  October 2016

Gardener AC, Ewing G, Farquhar M. Towards person-centred care: development of a patient support needs tool for patients with advanced Chronic Obstructive Pulmonary Disease (COPD) in primary care (oral). NIHR School for Primary Care Research 10 year anniversary event , London, 22nd  November 2016.

Additionally, study-related news items have been produced for participating Breathe Easy groups and for the NIHR SPCR newsletter.

Public involvement

PPI played a key role in the development of the funding application for this study through consultations with individual patients with advanced COPD and their informal carers. Patients and their carers were asked to consider the potential utility of a support needs assessment tool and discuss how a tool might be developed: they advised on study relevance and design (in terms of participant acceptability and feasibility). This PPI confirmed that (1) patient support needs were not typically addressed during consultations with the majority of Health Care Professionals (HCPs); (2) there were areas they did not feel entitled to ask for help with and areas they would prefer to have control over what, or when, topics were discussed (such as talking about the future); (3) the proposed tool could facilitate discussions and enable patients to set the agenda for discussion. Even patients who described being able to discuss a wide range of issues with HCPs felt the tool would support them to think about support needs from a wider perspective. Thus the study resonated with their concerns and they were keen to be involved in developing the tool. These findings were supported by one of the James Lind Alliance’s top ten unanswered questions for palliative and end-of-life care, identified using robust PPI methodology by the Palliative and end-of life care Priority Setting Partnership3: “What are the best ways to determine a person’s palliative care needs, then initiate and deliver this care for patients with non-cancer diseases?” (and listing COPD as an example condition).

New PPI advisers, British Lung Foundation Breathe Easy peer support groups and original LwB Study PPI advisors contributed to the study through an iterative consultation process fundamental to the success of developing a usable patient-completed support needs assessment tool. In addition, they supported delivery of the study by advising on recruitment materials, interpreting findings, and dissemination. Regular attendance at groups may be difficult for patients with a life-limiting condition, so a flexible approach was taken which provides patients with opportunities to contribute via email and telephone, as well as in person. CG acted as the point of contact for all PPI work, supported by MF.

PPI advisers were consulted on study recruitment materials and the interpretation and relevance of the study findings concerning the identification of support domains. They fully endorsed our findings and their relevance for patients with advanced COPD.

In addition to the focus group work with study participants outlined above, threePPI advisers were involved in the iterative process underpinning the development of the tool. They identified two areas as potentially problematic: 1) the length of the tool and 2) the potential perception of the tool as a ‘questionnaire’. In response we further collapsed two of the 

domains to produce the final 15-item version of the tool and are now working with the design team from the Media Studio at Cambridge University Hospitals’ NHS Foundation to produce a more patient-friendly design for the tool. The potential for adapting the tool for other formats (electronic) was also noted and will be used to inform later studies.

PPI advisers were also asked to comment on the potential use of the tool. There was a high level of support for the integration of the tool into annual reviews and routine appointments with other respiratory professionals. PPI advisers also identified the potential role of the findings regarding domains of support need within pulmonary rehabilitation or to create materials to support practitioners in their role. These comments will be used to inform the design of future clinician training materials that will support the overall Support Needs Approach for Patients (SNAP).

Breathe Easy members who also supported the study asked for further information and on- going updates about study progress. We therefore produced two short articles for their newsletters, and will continue to communicate our findings with the groups.

All three PPI advisors were at an advanced stage of COPD and lived some distance from each other and the University of Cambridge. Our flexible PPI model therefore proved to be a very successful way of gaining useful and relevant feedback. All three PPI advisors have expressed a willingness to continue to be involved and will be asked to consider supporting future grant applications.

Reference: www.palliativecarepsp.org.uk/wp-content/uploads/2015/01/PeolcPSP_Final_Report.pdf [accessed 31/10/2016]

Impact

The study has been presented to a range of academic and clinical audiences including primary, secondary, respiratory and palliative care through poster and oral presentations. At- poster discussions have involved occupational therapists, GP’s, practice nurses and representatives of national service user organisations. Mid- and post-conference interactions with academics, clinicians and national service user organisations via Twitter have also raised awareness of the SNAP tool and approach.

It was notable that participating clinicians in the Community Respiratory Team were particularly enthusiastic about the tool and approach, with some requesting to use it immediately after their stakeholder workshop. Although this was not possible given its draft nature at the time, the enthusiasm and interest from these professionals was palpable. The tool and approach which it underpins potentially had a place as a useful intervention in their daily clinical practice, enabling them to identify and address patients’ unmet support needs. A request for the tool was also made by an Occupational Therapist during a conference poster presentation: he identified the tool’s potential to support discharge planning from secondary care.

As outlined above a key theme of practitioner feedback has also been the potential for the tool to be adapted for patients with other long term conditions and the frail elderly. Despite being grounded in data from patients with advanced COPD, a number of practitioners (in both the Focus Groups and at dissemination events) noted that the domains were generic and reflected the support needs of a wider patient group. The simplicity of the tool was also highlighted as a factor that would support ease of use by other patient groups. 

Research project website: https://www.spcr.nihr.ac.uk/projects/towards-person-centred-care-development-of-a-patient-support-needs-tool-for-patients-with-advanced-chronic-obstructive-pulmonary-disease-copd-in-primary-care

This project was funded by the National Institute for Health Research School for Primary Care Research (project number 291)

Department of Health Disclaimer

The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the NIHR School for Primary Care Research, NIHR, NHS or the Department of Health.