“I want to know what to expect; even though it’s not pleasant. I want to know what’s going to happen and how to handle it when it does.” The views of patients and carers on best care for people with COPD: an interview study

Introduction: Chronic obstructive pulmonary disease (COPD) affects the lives of millions of people globally. However, little is known about the views of people with COPD and their carers on best care for the disease, including exacerbations. Methods: Semi-structured interviews were conducted by phone in a multicentre qualitative study. Participants were recruited purposively in primary and secondary care. Interviews were audio-recorded and analysed using reflexive thematic analysis. Descriptive data are presented as mean [SD] unless stated. Results: 40 COPD patients were interviewed (21 female; 28 white; age 69 [8.1] years, COPD duration 11.3 [8.3] years, median [range] number of exacerbations in the past year 1.5 [0-9]). Seven carers (6 female, 6 white) were interviewed. Four themes were identified: 1) Listen to your body–patients feel they should be encouraged to see a clinician when symptoms first develop, enabling early diagnosis and health behaviour change; 2) Preparedness–patients want clinicians to prepare them for symptom worsening; 3) Start at the beginning–patients want early education to support symptom management; 4) COPD care is a partnership–handling exacerbations is best done in a partnership between patients, carers and clinicians. Discussion: People delay presenting in primary care with breathlessness, consequently diagnosis and appropriate management of COPD can be delayed. Patients recommended that people be encouraged to present early with symptoms of COPD. Following diagnosis, they welcomed ongoing clinician support on how to be healthier and how to manage symptoms using non-pharmacological techniques. Patients valued knowing that their symptoms may worsen and being able to prepare with their clinicians how best to handle exacerbations. These recommendations are in line with NICE guidance that management should include smoking cessation, referral to pulmonary rehabilitation and co-development of a personalised self-management plan. Clinicians and patients value clarity and candour and educational efforts should consider this for both groups.