The priorities of people with mesothelioma and their carers: A qualitative interview study of trial participation and treatment decisions

• Published in: European journal of oncology nursing : the official journal of European Oncology Nursing Society 2022-04, Vol.57, p.102111-102111, Article 102111
• Main Authors: Bibby, Anna C., Morley, Anna J., Keenan, Emma, Maskell, Nick A., Gooberman-Hill, Rachael
• Format: Article
• Language: English
• Subjects: Caregivers; Communication; Decision Making; Humans; Mesothelioma; Mesothelioma - therapy; Priorities; Qualitative; Qualitative Research; Quality of Life; Relatives
• ISSN: 1462-3889; 1532-2122
• DOI: 10.1016/j.ejon.2022.102111

Treatment 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. The aim of this study was to provide insight into people's experiences of participating in clinical research and explore the factors influencing decision-making. Face 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. Twelve 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 planning for an unpredictable future. A further theme related to attitudes to research participation. 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. The study confirmed previous qualitative findings around physicality, stoicism and uncertainty, 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 and attitudes to research of relatives. •People with mesothelioma value physical well-being and quality of life.•Risk of side effects leads some people to decline treatment or trial participation.•Unambiguous or factual information was preferred, and uncertainty avoided.•Reasons for research participating included altruism, advancing knowledge and hope.•Relatives were more reluctant about research and more anxious about the future.