Action plans in idiopathic pulmonary fibrosis: a qualitative study—‘I do what I can do’

Abstract

BackgroundIdiopathic pulmonary fibrosis (IPF) is a progressive, incurable fibrotic lung disease in which patients and caregivers report a high symptom burden. Symptoms are often poorly managed and patients and caregivers struggle to alleviate their distress in the absence of self-management support.AimTo explore perceptions of symptoms, symptom management strategies and self-efficacy for patients with IPF and caregivers who received self-management education and action plans created and provided in a Multidisciplinary Collaborative Interstitial Lung Disease (MDC-ILD) Clinic.DesignA qualitative study was conducted with participants recruited from the MDC-ILD Clinic. Participants received an early integrated palliative approach; most attended ILD pulmonary rehabilitation and some received home care support. Semistructured interviews were conducted. Patient participants completed Measure Yourself Medical Outcome Profile (MYMOP) for symptom assessment and Chronic Obstructive Pulmonary Disease Self-Efficacy Scale to assess self-management efficacy.ResultsThirteen patients and eight self-declared caregiver participants were interviewed. IPF severity ranged from mild to advanced disease. Participants integrated and personalised self-management strategies. They were intentional and confident, focused on living well and engaged in anticipatory planning. Twelve participants completed the MYMOP. Five reported dyspnoea. Four reported fatigue as an additional or only symptom. One reported cough. Five declared no dyspnoea, cough or fatigue. Participants reported 80% self-efficacy in symptom management.ConclusionsThe approach to symptom self-management and education was beneficial to patients with IPF and caregiver participants. Participants personalised the strategies, focusing on living, and planned both in the moment and for the future. They were confident and expressed dignity and meaning in their lives.

When should palliative care be introduced for people with progressive fibrotic interstitial lung disease? A meta-ethnography of the experiences of people with end-stage interstitial lung disease and their family carers

“…Two of the UK articles presented data from the same interview subjects 23 , 24 two papers were written by the same research group in Denmark 25 , 26 and a further three by a research group in Canada. 27 , 28 All the papers were published between 2013 and 2021 reflecting the increased interest in qualitative research in this field in recent years.…”

“…A Canadian study which reviewed the effect of self-management education found that patients were more confident managing their symptoms and able to shift their perspectives to focus on living well with their disease. 27 …”

“…There was no agreement from the included studies about the optimal time for involving palliative care in patient management. Kalluri et al 27 described the benefits of an early integrated palliative care approach combined with patient self-management strategies. Clinicians were trusted to decide on when was the right time to initiate discussions and how much information should be given and at what time.…”

“… 23 However, a study which focussed on the introduction of self-management strategies depicted a very different outlook, with patients describing feeling positive about their symptom control and concentrating on meaningful activities. 27 This study recruited patients from a specialist clinic with early integrated palliative care and an extensive patient education programme, a situation which may explain the incongruence of these results.…”

“… 37 , 40 This divergence led to tensions and conflict when carers attempted to encourage the use oxygen to facilitate activity. 36 Conversely, two studies reported the views of patients who were accepting of oxygen and the benefits of using this to help with their daily lives 27 , 35 These differing perspectives highlight the importance of open, honest discussion with patients to address their specific fears and not assume that clinicians understand the complexity of these concerns.…”