What causes ‘Missingness’ in primary care? A realist synthesis and interview study

Problem

Large scale epidemiological research in Scotland identified a cohort of patients missing multiple primary care appointments. These patients tend to experience multimorbidity, socioeconomic deprivation, and face a greater risk of premature mortality than the general population. This phenomenon was termed ‘missingness’; ‘the repeated tendency not to take up offers of care such that it has a negative impact on the person and their life chances’. Across policy and research, missed appointments are typically framed as a problem for services caused by ‘non-engaging’ patients. Proposed solutions have drawn on an evidence base that typically does not distinguish between situational, single missed appointments and more enduring missingness, the causes of which remain poorly understood. In failing to understand and address the drivers of missingness, such interventions are likely increase to access inequalities. This study aims to understand why missingness happens to inform future interventions development.

Approach

Our mixed-methods study is a realist synthesis of 196 papers from the existing literature, and qualitative interviews undertaken with 30 experts-by-experience and 30 professionals. Realist research takes a theory-driven approach to primary and secondary evidence, seeking to explain the causal dynamics of social phenomena. Applying a realist logic to the literature and interviews, we produced a programme theory of missingness using a novel theoretical framework which integrates the candidacy framework with fundamental cause theory.

Findings

Missingness is driven by the interaction between overlapping service- and patient-side determinants throughout the patient journey. These dynamics include whether patients feel the appointment or service is 'for them' - whether it feels necessary, suitable, beneficial or appropriate. Many patients’ experiences of services are characterised by poor communication, power imbalances, stigma and relational threat, and non-attendance may be a protective act. Patients may be exposed to competing demands on their resources, including work and finances, caring responsibilities, treatment burden, and unmet basic needs. Service systems may lack flexibility or choice in where, when, and with whom appointments take place. While often rooted in prior experiences of care, importantly, these findings demonstrate that the drivers of missingness are amenable to change.

Consequences

These findings highlight the need for future non-attendance research to adopt a missingness lens. In doing so, research should move beyond demonstrating statistical associations towards exploring, through in-depth, theoretically rich methodologies, the complex drivers of missingness as they are shaped across different contexts. For policymakers and practitioners, they also suggest key principles for interventions. These include identifying at-risk patients; providing targeted, person-centred care to address specific needs and barriers; identifying causal pathways operating both within and outside of healthcare and collaborating to address these; and designing interventions around increasing safety for those seeking care.