Patients’ experiences of continuity of care : What is needed and how can it be measured?

Abstract: Aim: The overall aim for this thesis was to explore continuity of care through patients’, family carers’, and health care personnel’s perceptions, and to develop and evaluate a patient-reported experience measure of continuity of care.Method: This thesis consists of four studies; I have a qualitative explorative design and II have a qualitative descriptive design, whereas III and IV are methodological studies. In studies I and II, data were collected from four geographically disparate areas in Sweden; in studies III and IV, data were collected in one of these areas. Data were collected using individual (I, II, III), focus groups, pair interviews (II), and questionnaires (III, IV). Data were analyzed using constructivist grounded theory (I), conventional content analysis (II), and according to classical test theory (III), and Rasch measurement theory (IV).Results: For patients to experience continuity of care, all aspects were interconnected, as access to tailored information was essential for gaining mutual understanding regardless of who was performing a care task. This required clarity in responsibilities and roles, interprofessional collaboration, and a trusting relationship over time and space between each link in the patient’s care trajectory (I). Further, Study II showed that to achieve continuity of care, professional and cross disciplinary cooperation at micro, meso and macro levels were needed. Continuity of care is dependent on long-term and person-centered relationships, dynamic stability in the organizational structure, and shared responsibility for cohesive care enabling uniform solutions for knowledge and information exchange (II). Studies III and IV resulted in the Patient-Experienced Continuity of care Questionnaire (PECQ). The instrument contains 20 items measuring four dimensions of continuity of care: Information (four items), Relation (six item), Management (five item), and Knowledge (five item). Overall, the PECQ showed satisfactory measurement properties according to classical test theory and Rasch measurement theory (III, IV) regarding factor structure, unidimensional, local independence, response category function, differential item functioning for age and sex, and internal consistency reliability.Conclusion: Continuity of care is perceived as multidimensional, containing several important aspects working in synergy and varying over time. To achieve continuity of care, information and knowledge sharing need to cross disciplinary and organizational boundaries. Collaborative responsibility is needed, vertically through all levels of the system, instead of focusing on personal responsibility horizontally. The PECQ can provide information on different dimensions of continuity, useful for driving quality improvements in the primary care context.