Patient involvement in diagnosing cancer in primary care: a systematic review of current interventions

Jane Heyhoe, Caroline Reynolds, Alice Dunning, Olivia Johnson, Alex Howat, Rebecca Lawton

Patients can play a role in achieving an earlier diagnosis of cancer by monitoring and re-appraising symptoms after initially presenting to primary care. It is not clear what interventions exist, or what the components of an intervention to engage patients at this diagnostic stage are. The review had two aims: 1) to identify interventions that involve patients, and 2) to establish key components for engaging patients in the diagnosis of cancer in primary care at the post-presentation stage. Empirical studies and non-empirical articles were identified searching Ovid MEDLINE, PsycINFO, and Embase databases, relevant journals, and available key author publication lists. Abstracts and titles were screened against inclusion and exclusion criteria. Qualitative synthesis of empirical research and current opinion from across all articles was used to select, organise, and interpret findings. No interventions were found. Sixteen articles provided suggestions for potential interventions and components important at the post-presentation stage. Factors contributing to patients not always being engaged in assisting with diagnosis, strategies to foster patient involvement, and moderators and benefits to patients and health services (proximal and distal outcomes) were captured in a logic model. There is an absence of interventions involving patients during the post-presentation stage of the diagnostic process. Limited literature was drawn upon to identify potential barriers and facilitators for engaging patients at this diagnostic stage, and to establish possible mechanisms of change and measurable outcomes. Findings can direct future research and the development of interventions.