Uncertainty prior to pulmonary rehabilitation in primary care

Abstract

Pulmonary rehabilitation (PR) is recommended for patients functionally restricted by chronic obstructive pulmonary disease (COPD). However, attendance and adherence to PR remains suboptimal. No previous research has explored COPD patient experiences during the key period from referral to initiation of PR in the United Kingdom. This research aimed to explore the lived experience of COPD patients referred to PR programmes prior to participation. COPD participants were recruited from referrals to two community PR programmes. Semi-structured interviews with COPD participants occurred following PR referral, but prior to programme initiation. Data were analyzed using applied interpretive phenomenology. Twenty-five COPD participants aged 42-90 were interviewed. 'Uncertainty' affected participants throughout their lived experience of COPD that negatively impacted illness perceptions, PR perceptions and increased participant's panic and anger. Participants who perceived COPD less as a chronic condition and more as a cyclical process experienced fewer feelings of panic or anger. The experience of uncertainty was disabling for these COPD participants. Recognition of the role that uncertainty plays in patients with COPD is the first step towards developing interventions focused on reducing this uncertainty, thereby reducing the burden of the disease for the individual patient and facilitating PR attendance.

Patients and informal caregivers’ experiences of burden of treatment in lung cancer and chronic obstructive pulmonary disease (COPD): a systematic review and synthesis of qualitative research

“…Patients with COPD often described feeling stigmatised by their HCPs 39 40 44 71 74 75 118 126–128. Patients with COPD and their informal caregivers felt that HCPs believed that patients who had smoked were not entitled to treatment or gave substandard treatment to (ex)smokers39 75 126 128:…”

An observational cohort study of exercise and education for people with chronic obstructive pulmonary disease not meeting criteria for formal pulmonary rehabilitation programmes

“…Fischer et al 25 report those COPD patients who had been diagnosed for 5 years or more had a greater belief that their symptoms were due to COPD, perceived greater consequences, perceived that their COPD would disable them for longer and were less optimistic about disease controllability. Furthermore, Lewis et al 26 state that living with uncertainty about COPD was disabling for patients who had not yet received PR, making some feel like they were deteriorating living with the condition, experiencing fear, panic and an awareness of being close to death. Interventions such as the programme offered close to diagnosis may enable disease perceptions and resulting behaviour change to occur more successfully than waiting till patients are eligible for PR, sometimes years after diagnosis.…”

Understanding patient participation behaviour in studies of COPD support programmes such as pulmonary rehabilitation and self-management: a qualitative synthesis with application of theory

“…Assessment of patient perceptions will help identify eligible and suitable patients for the treatment and predict attendance in the treatment. 19 In addition, the negative perceptions towards illness and treatment 73 could be targeted using effective behaviour change interventions 48 , 53 , 57 to help improve participation in COPD support programmes. To get health professionals and indeed the wider health system to ‘buy-in’ this form of patient support, exploring the views of professionals (beyond factors affecting patient referral or perceived patient challenges in attending PR 68 , 74 ) is warranted.…”