The Priorities of People with Mesothelioma: A Qualitative Study of Trial Participation and Treatment Decisions

Abstract BackgroundTreatment options for mesothelioma are increasing, as are the number of clinical trials available to patients. However, little is known about patients’ and relatives’ priorities when making decisions about treatment and trial participation. MethodsFace to face, semi-structured interviews were undertaken with mesothelioma patients who were participating in the TILT trial (a randomised trial of intra-pleural immunotherapy) and their relatives. Interviews were audio-recorded, transcribed and analysed thematically. ResultsTwelve people were interviewed, comprising five mesothelioma patients and seven relatives. Four themes were identified relating to the experience of mesothelioma: physicality, quality of life, uncertainty and risk, and anxiety and the future. A further theme related to attitudes to research participation.Participants valued physical strength and were careful not to jeopardise this with potential side effects of medication. Quality of life was important and was often prioritised over survival. Participants found ambiguity challenging and sought certainty, potentially in response to the uncertainty surrounding their future. The desire for certainty impacted on risk perception; an important factor in decision-making. Relatives often advocated on behalf of patients and were more reluctant about research participation due to concern about potential risks.ConclusionThe study confirmed previous qualitative findings around physicality, uncertainty and relatives as advocates, building on these themes to highlight their influence on decision-making. Important findings for practice include the challenges associated with risk communication and the differing care needs of relatives.