Rethinking continuity in general practice for people with mesothelioma

Background: Continuity in general practice has clear benefits at both individual and organisational levels but is difficult to achieve. Mesothelioma is an incurable disease, the only known cause of which is asbestos. People with mesothelioma potentially derive significant benefit from continuity; however, there is little research exploring continuity in general practice for such patients. There is a specific gap in the literature regarding understanding the work required of patients to achieve continuity within general practice for themselves.

Aims: (1) To provide detailed understanding of the experiences of continuity in general practice among people with mesothelioma, their close persons, and their healthcare professionals (HCPs); how they achieve this (or not); and how it affects their healthcare service use. (2) To make policy relevant recommendations and develop new guidance to support people with mesothelioma and their close persons to achieve the continuity from general practice that they desire.

Methods: This realist evaluation involved three phases. In Phase 1, a systematic literature review was undertaken. Phase 2 involved creating realist case studies of patient experience of the healthcare system, using data obtained from longitudinal interviews with people with mesothelioma, their close persons, and their HCPs. Phase 3 involved undertaking stakeholder consultation to refine theory and generate guidance. Workshops and individual interviews with people with mesothelioma and their close persons; cancer or mesothelioma specialists; and members of general practice teams were conducted. Five individuals participated in this study in a patient and public involvement capacity. Analysis consisted of three components: reflexive thematic analysis (inductive); formation of realist Context-Mechanism-Outcome configurations (retroductive) leading to programme theory refinement; and application of existing theory (deductive).

Findings: In Phase 2, a total of 54 interviews were undertaken. Within 9 case studies, 48 interviews were conducted, and each participant took part in up to three interviews over a 3-month period. A further 6 unaffiliated GPs were recruited separately to participate in single interviews. In Phase 3, four workshops and three individual interviews were undertaken, including a total of 22 participants. Based on findings from all phases of this study and the application of existing theory and literature, an overarching programme theory has been developed. It explains how, why, and in what circumstances people with mesothelioma experience continuity in general practice (or not). The programme theory is structured according to five key concepts: challenges unique to mesothelioma; patient and close person capacity to facilitate continuity in general practice; HCP capacity to facilitate continuity in general practice; MDT approach differs from traditional family doctor model; and ‘NHS general practice is broken’.

Conclusion: This research deepens understanding of continuity in NHS general practice for people with mesothelioma, and recommendations relating to clinical practice, policy and research have been made. A new theoretical framework entitled ‘CAP Continuity’ was designed, which stipulates that if continuity is to be achieved, the healthcare system must be adequately resourced; HCPs and patients must be sufficiently competent to provide care or navigate the system to receive such care; and each party within the clinician-patient relationship requires an attitude that reflects appreciation of the value of continuity. Although this study focused on people with mesothelioma, it is relevant to other patient populations, particularly those with other rare conditions or palliative care needs.