Variation in the diagnostic and treatment pathway in peritoneal mesothelioma: a mixed-methods study in the United Kingdom

Peritoneal mesothelioma (PM) is a rare and aggressive cancer with a significant impact on the patient quality of life. This study aimed to explore variability in the care pathway of people with PM and to explore the patient experience of the care pathway. A mixed-methods, longitudinal approach was employed. The three stages of the study were (1) cross-sectional survey of PM patients and family members exploring demographic characteristics, patient pathway, experiences of treatment and care; (2) qualitative, case study series of individual patients, their family member/carer/friend and professionals; and (3) case note review of case study patients living with PM. Forty-seven patients (30 women and 17 men) responded to the survey. We recruited seven case studies comprising seven patient participants, eight carers and six professionals. Findings revealed a significant delay in diagnosis due to nonspecific symptoms and challenges in differential diagnosis. The study highlights the need for improved timely diagnosis, enhanced communication between healthcare providers and patients, and referral to specialist mesothelioma multidisciplinary teams. Recommendations include the need to implement smoother treatment and management pathways, to increase referrals to specialist multi-disciplinary teams and to engage patients in decision-making throughout the treatment pathway.