Understanding service user-defined continuity of care and its relationship to health and social measures: a cross-sectional study

BACKGROUND Despite the importance of continuity of care [COC] in contemporary mental health service provision, COC lacks a clearly agreed definition. Furthermore, whilst there is broad agreement that definitions should include service users' experiences, little is known about this. This paper aims to explore a new construct of service user-defined COC and its relationship to a range of health and social outcomes. METHODS In a cross sectional study design, 167 people who experience psychosis participated in structured interviews, including a service user-generated COC measure (CONTINU-UM) and health and social assessments. Constructs underlying CONTINU-UM were explored using factor analysis in order to understand service user-defined COC. The relationships between the total/factor CONTINU-UM scores and the health and social measures were then explored through linear regression and an examination of quartile results in order to assess whether service user-defined COC is related to outcome. RESULTS Service user-defined COC is underpinned by three sub-constructs: preconditions, staff-related continuity and care contacts, although internal consistency of some sub-scales was low. High COC as assessed via CONTINU-UM, including preconditions and staff-related COC, was related to having needs met and better therapeutic alliances. Preconditions for COC were additionally related to symptoms and quality of life. COC was unrelated to empowerment and care contacts unrelated to outcomes. Service users who had experienced a hospital admission experienced higher levels of COC. A minority of service users with the poorest continuity of care also had high BPRS scores and poor quality of life. CONCLUSIONS Service-user defined continuity of care is a measurable construct underpinned by three sub-constructs (preconditions, staff-related and care contacts). COC and its sub-constructs demonstrate a range of relationships with health and social measures. Clinicians have an important role to play in supporting service users to navigate the complexities of the mental health system. Having experienced a hospital admission does not necessarily disrupt the flow of care. Further research is needed to test whether increasing service user-defined COC can improve clinical outcomes. Using CONTINU-UM will allow researchers to assess service users' experiences of COC based on the elements that are important from their perspective.