The Living with Breathlessness study followed more than 500 people with advanced chronic obstructive pulmonary disease (COPD) with the aim to identify new approaches to improving care and support. Six recommendations emerged from the study, and this report contains the findings from an online survey of stakeholders who work with people living with advanced COPD to explore agreement with, and feasibility of these recommendations.

Cover: Agreement with, and feasibility of, the emerging recommendations from the Living with Breathlessness study
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Agreement with, and feasibility of, the emerging recommendations from the Living with Breathlessness study

Findings from an online stakeholder survey

by Catherine L. Saunders, Peter Burge, Morag Farquhar, Sarah Grand-Clement, Susan Guthrie, Tom Ling

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Research Questions

  1. Do stakeholders who work with people living with advanced COPD agree that the emerging recommendations from the Living with Breathlessness Study would improve care for people with COPD?
  2. How easy do stakeholders who work with people living with advanced COPD consider the implementation of the Living with Breathlessness recommendations in their place of work would be?

Chronic obstructive pulmonary disease (COPD) carries a high symptom burden. Management of patients with advanced COPD should address patients' symptoms and care needs, optimise daily functioning and stabilise health status. The Living with Breathlessness study explored the question of how patients' and carers' needs change along the trajectory of advanced COPD and how guidelines should be amended to meet these changing needs.

Six recommendations emerged from the study; we carried out an online survey of stakeholders who work with people living with advanced COPD in order to explore whether they agreed that the recommendations would improve care for people with COPD and what their opinions were on the ease of implementation of such recommendations in their place of work.

Overall there was high agreement that all of the recommendations would improve care and support for people with advanced COPD; however, the survey also revealed caution around the ease of implementing some of these recommendations, as well as variation in responses among professional groups and settings. Concerns largely focused on the time and resources needed to implement the recommendations and, in particular, the resources needed to respond appropriately to any unmet needs identified through the more patient-focused and holistic analysis of patient and carer needs that these recommendations represent.

The evidence from this survey suggests that there is a significant level of support for these recommendations among healthcare practitioners working with people with COPD. The vast majority of survey respondents agreed that each of the recommendations has the potential to improve the quality of life for COPD patients.

Key Findings

  • There is a significant level of support for these recommendations among healthcare practitioners and others working with people with COPD.
  • The vast majority of respondents agreed that each of the recommendations would have the potential to improve quality of life for COPD patients.
  • Respondents also expressed caution around ease of implementation of these recommendations, with only around half of respondents indicating that implementation would be straightforward in most cases.
  • Concerns largely focus on the time and resources needed to implement these findings and, in particular, to respond appropriately to any unmet needs identified through more patient-focused and holistic analysis of patient and carer needs.
  • There was also a notable dissatisfaction with 'tick box' or target-led approaches, so care would need to be taken to ensure that any adopted recommendations do not just add another item to the list of targets practitioners have to meet.
  • Many respondents felt that they were already incorporating many elements of these recommendations into their existing practice, suggesting that, although there may be some challenges in implementing these recommendations, they are not insurmountable.

Recommendations

  • Ensure that each recommendation is clearly targeted at the most relevant groups for implementation.
  • Consider and address the concerns of stakeholders expressed in the free-text survey responses received.
  • Consider focal changes to, and professional copyediting of, the wording of some recommendations before they are used in the future

Table of Contents

  • Chapter One

    Introduction

  • Chapter Two

    Methods

  • Chapter Three

    Findings

  • Chapter Four

    Conclusions

  • Chapter Five

    Appendix

Research conducted by

The research described in this report was prepared for the University of Cambridge and conducted by RAND Europe.

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