Factors affecting clinical trial participation in people with interstitial lung disease – a qualitative study

Background Clinical trials are the best method for evaluating new treatments for people with interstitial lung disease (ILD). However, recruitment in ILD clinical trials is often challenging. Certain trial characteristics may influence willingness to participate but this has not been investigated in people with ILD. This study aims to identify the factors that influence participation in clinical trials in people with ILD. Methods This is a qualitative study using thematic analysis. Participants with ILD were recruited from a tertiary hospital in Melbourne between 2023–24. Interviews were conducted over the phone, recorded and transcribed. The study was approved by the Alfred Hospital Ethics Committee (598/22). Results Seventeen participants with mild to moderate ILD were included. Overarching themes were: 1) reasons for participation, including development of new treatments, acceptable burden of participation, and positive relationship with the research team; 2) reasons for refusing participation, consisting of disruption to daily life including financial burden, impact on health, and uncertainty of benefits; 3) experience when participating, including lack of communication and poor relationship with the research team. Participants described positive experiences (care and support from the research team) and negative experiences (discontinuation of treatment, insufficient information on trial outcomes) of trial participation. Discussion People with ILD prefer trials that offer clear information and minimize disruption to their daily routines. A unique finding in this population is the importance placed on communication and support from the research team, as well as the desire to receive feedback about the trial's outcomes.