Title: Development of an intervention to increase utilisation of pulmonary rehabilitation in primary care
Funder: Department of Health and Social Care

Abstract: Background In the UK approximately 1.2 million people live with chronic obstructive pulmonary disease (COPD), a progressive lung disease in which people experience breathlessness, exercise incapacity and are vulnerable to exacerbations, frequently requiring hospitalisation. COPD costs the NHS &pound;800m pa, mostly relating to hospital admissions. NICE recommends that pulmonary rehabilitation (PR), providing supervised exercise and education, is offered to patients functionally disabled by COPD. PR leads to improvements in exercise capacity and quality of life and fewer repeat exacerbations requiring hospitalisation, thus contributing to NHS savings. However, although there are some promising interventions which may improve referral and uptake, PR is underutilised in England and Wales. In 2013/14 referrals accounted for only 15% of normative need and those who attended assessment accounted for 10% of normative need. 51% of referrals are from primary care. This project will develop an evidence-based, affordable toolkit to increase primary care referrals to PR and the number of patients who take up an offer. It will interface with working practices/systems and incorporate resources, informed by research, to overcome barriers to referral and uptake and support facilitating factors. Methods Mixed methods will include survey and qualitative research to develop a theory-based toolkit informed by three closely aligned theories. Normalisation Process Theory (NPT) will be used to understand how healthcare professionals (HCPs) routinise management of COPD, including PR referral. Patient experience will be understood through Burden of Treatment Theory, a structural model of the relationship between treatment burden and patients /carers capacity to undertake work required to manage their condition. Health service responses to reduce this burden will be understood through the Minimally Disruptive Medicine Care Model, a patient-centred approach in which patients and professionals work together to advance patient goals whilst imposing the smallest possible treatment burden. We will survey all GP practices in East of England to identify how barriers to PR referral and uptake can be overcome and identify existing resources for possible inclusion in the toolkit. Survey data will be mapped to referral and uptake data from PR services in East of England to explore relationships between referral processes and geographical variation in referral and uptake. Semi-structured interviews and focus groups will be held with patients and accompanying carers, practice nurses, GPs, physiotherapists delivering PR and commissioners, sampling from CCG areas that have low and high utilisation of commissioned places. Qualitative data will be analysed following a framework analysis approach. NPT and burden of treatment constructs will inform a deductive coding structure supplemented by inductive coding to allow unexpected findings to emerge. The study team will develop the toolkit with a toolkit user group (HCPs and patients/carers) using an iterative design process from concept to development, including acceptability and usability testing. Built on a WordPress platform, it will be created in the live location immediately. We will then evalaute it with practice nurses in five primary care practices over four weeks to assess real life performance and exploratory efficacy testing. Toolkit content will be defined from the research but could include existing educational materials such as DVDs or novel electronic prompts/templates, links to guidelines/decision-support tools with options for printing. Simple, practical and flexible, it will provide key information about what makes a difference to PR referral and uptake. An online platform will enable ongoing development/updating. What our study will add The research will explore patient and professional ideas to increase referral and uptake and use this understanding to develop a practical and flexible toolkit of resources for integration into clinical workflows. The toolkit will address needs of HCPs and patients in decision-making about PR so that greater numbers of patients can access its benefits.

Lay abstract: Aim To develop an intervention for primary care to increase the number of patients with COPD who are referred to pulmonary rehabilitation and who attend pulmonary rehabilitation following a referral. Background Approximately 1.2 million people have Chronic Obstructive Pulmonary Disease (COPD) causing breathlessness, difficulty with daily activities, frequent infections and hospitalisation. Pulmonary rehabilitation programmes offer exercises and advice to help control symptoms such as breathlessness and fatigue. They improve quality of life and avoid hospital admission. Many patients do not receive pulmonary rehabilitation because they do not know about it or healthcare professionals caring for them do not refer them. Of those referred 31% do not take up the offer. Previous attempts to encourage referral and uptake have had some success but there are no well proven solutions with clear evidence of what works. Proposed research We want to talk to patients, patient groups (e.g. Breathe Easy) and healthcare professionals caring for people with respiratory disease through surveys, interviews and meetings. We will gather ideas about how to make it easier for healthcare professionals to refer breathless patients and for patients to make informed decisions about attending pulmonary rehabilitation. We will combine this with evidence from published research about what can improve referral and uptake and then work with patients and healthcare professionals to bring this information together in an online toolkit. The toolkit will define what GP practices need to do to help patients attend pulmonary rehabilitation. Examples of what the toolkit may include are patient-friendly, easily understood information for printing or viewing online, electronic reminders on patients records and simplified referral processes. We will test the toolkit in primary care to ensure it is user-friendly, practical for the NHS and has the potential to make a difference.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: RESPIRATORY