Integrating palliative care education in pulmonary rehabilitation: a randomized controlled study protocol.

BACKGROUND: Palliative care addresses multiple unmet needs of people with chronic obstructive pulmonary disease (COPD) or interstitial lung diseases (ILD) and their family and/or friend caregivers, but it remains highly underused. Pulmonary rehabilitation (PR) may provide a key opportunity to introduce palliative care. We aim to explore the effects of palliative care education as part of PR on knowledge about this field in people with COPD or ILD and their family and/or friend caregivers. METHODS: A randomized controlled study will compare PR with palliative care education (experimental) with traditional PR (control) in people with COPD or ILD and their family and/or friend caregivers. Family and/or friend caregivers will be invited to take part in education and psychosocial support sessions. In addition to the usual educational content, the experimental group will have a session on palliative care, a "Peer-to-peer session", two "Get-apart sessions" and online sessions. The "Peer-to-peer session" and the "Get-apart sessions" will be discussions about topics suggested by participants. The "Get-apart sessions" will be dedicated to people with COPD or ILD apart from their family and/or friend caregivers and vice versa. The online sessions will be zoom meetings to discuss any health-related issues raised by participants, at a flexible time. A mixed-methods approach will be used to evaluate the outcomes. The primary outcome will be knowledge about palliative care. Secondary outcomes will include attitude towards palliative care referral, symptoms, disease impact, health-related quality of life, needs, knowledge about the disease, burden of providing care, adherence, adverse events and referral to a specialist palliative care team. Quantitative and qualitative data will be collected at baseline and end of PR. At 6-months post-PR, only patient-reported outcomes will be collected. For the primary outcome, time*group interaction will be analyzed with mixed analysis of variance. DISCUSSION: This study aims to demonstrate the impact of integrating palliative care into the PR education program. TRIAL REGISTRATION: The trial was registered in the ClinicalTrials.gov U.S. National Library of Medicine, on 1st September, 2023 (NCT06046547).

End-of-life preferences of people with advanced chronic obstructive pulmonary disease.

OBJECTIVES: To identify end-of-life preferences of people with advanced chronic obstructive pulmonary disease (COPD) and to compare characteristics between those who wish to discuss the end-of-life and those who do not. METHODS: An analysis of the baseline data of a randomised controlled trial was performed including people with COPD GOLD stages III-IV or former quadrant D with modified Medical Research Council questionnaire grade ≥2, after hospital discharge following an exacerbation. Participants were interviewed using the End-of-Life Preferences Interview. RESULTS: A total of 165 individuals (53% men; 68±9 years old; 55% care dependent) were included. Most participants wished to take part in shared decision-making (78%), to be informed about a short life expectancy (82%), to discuss the end-of-life (82%), to have loved ones around at death (87%) and to choose when to die (70%). They also reported accepting opioids (74%). Preferences for who to provide physical care, the place, consciousness and atmosphere at death as well as life-sustaining treatments were heterogeneous. Participants who wanted to discuss the end-of-life had a significantly higher educational level (p=0.030) and worse health status than participants who did not (p=0.007). CONCLUSIONS: End-of-life preferences of people with advanced COPD were heterogeneous, however, most wished to discuss it, especially those with higher educational level and worse health status. TRIAL REGISTRATION NUMBER: NTR3940.

Lifestyle integrated functional exercise for people with interstitial lung disease (iLiFE): A mixed-methods feasibility study.

BACKGROUND: People with interstitial lung disease (ILD) present low levels of physical activity (PA) and spend most of their time at home, especially in advanced stages of the disease. The Lifestyle Integrated Functional Exercise for people with ILD (iLiFE) embedding PA in patients' daily routines was developed and implemented. OBJECTIVES: This study aimed to explore the feasibility of iLiFE. METHODS: A pre/post mixed-methods feasibility study was conducted. Feasibility of iLiFE was determined by participant recruitment/retention, adherence, feasibility of outcome measures and adverse events. Measures of PA, sedentary behaviour, balance, muscle strength, functional performance/capacity, exercise capacity, impact of the disease, symptoms (i.e., dyspnoea, anxiety, depression, fatigue and cough) and health-related quality of life were collected at baseline and post-intervention (12-weeks). Semi-structured interviews with participants were conducted in-person immediately after iLiFE. Interviews were audio-recorded, transcribed and analysed by deductive thematic analysis. RESULTS: Ten participants (5♀, 77±3y; FVCpp 77.1 ± 4.4, DLCOpp 42.4 ± 6.6) were included, but only nine completed the study. Recruitment was challenging (30%) and retention high (90%). iLiFE was feasible, with excellent adherence (84.4%) and no adverse events. Missing data were associated with one dropout and non-compliance with the accelerometer (n = 1). Participants reported that iLiFE contributed to (re)gain control in their daily life, namely through improving their well-being, functional status and motivation. Weather, symptoms, physical impairments and lack of motivation were identified as threats to keep an active lifestyle. CONCLUSIONS: iLiFE seems to be feasible, safe and meaningful for people with ILD. A randomised controlled trial is needed to strengthen these promising findings.