Rethinking continuity in primary care for people with mesothelioma

Background Mesothelioma is a terminal disease linked to asbestos exposure, often with a poor prognosis. Palliative care can be valuable at all stages of the disease trajectory. GPs have a key role in supporting such patients. Continuity is difficult to provide within the current NHS primary care system but is highly valued by patients with mesothelioma. Aim To understand the experiences of continuity in primary care among people with mesothelioma, their close persons, and their healthcare professionals; how they achieve this (or not); and how it affects healthcare service use. Method A systematic review of the international literature on continuity in primary care for people with advanced cancer. Realist case studies of patient journeys through the healthcare system (involving longitudinal interviews and observations with people with mesothelioma, their close persons, and their healthcare professionals; and exploration of the organisational context). Results Four themes were developed from the literature: the role of GPs in facilitating continuity; the role of patients and/or close persons in facilitating continuity; changing needs throughout the disease trajectory; and the organisational context in primary care. Preliminary findings from the case study data are presented. The coding framework includes themes relating to the initial programme theories, the Candidacy Framework, components of capacity, researcher reflexivity, and other disease- and service-specific themes. Conclusion More research is needed to understand the experiences of continuity in primary care among people with mesothelioma. Specifically, there is an evidence gap regarding understanding their ability to achieve their desired level of continuity within primary care.