Continuity of care after hospitalization due to cardiac conditions : Patients' perceptions, validity and reliability of a measure, and associations with outcomes

Abstract: Background: Cardiac conditions are a common cause of hospitalization worldwide. The need for healthcare continues after hospital discharge and most commonly includes follow-up within primary healthcare centers or specialized outpatient cardiology clinics. This transition from the hospital to outpatient or primary-care settings jeopardizes the continuity of care. Continuity of care refers to the coordination of healthcare between different healthcare personnel and settings over time. There are three types of continuity of care: informational, relational, and management continuity. Continuity of care is essential after hospitalization due to cardiac conditions, and is associated with several positive clinical outcomes; however, available patient-reported measures of continuity of care during the posthospital period needs further validation. Accurate measurements would improve our ability to evaluate implementations designed to enhance continuity of care. Moreover, there is a lack of knowledge about whether the associations between continuity of care, perceived control, and self-care could explain variations in health-related quality of life and hospital readmissions in patients with cardiac conditions.Aim: The overall aim of this thesis was to contribute to improving care after hospitalization for patients with cardiac conditions by describing continuity of care from the patient’s perspective and increasing the understanding of how continuity of care can be measured and how it can influence patient outcomes.Method: All four studies had a cross-sectional design using a consecutive sampling procedure (I–IV). Study I was a single-center study and studies II–IV were multicenter studies. Data was collected using structured telephone interviews (I), questionnaires (II–IV), and review of medical charts (I–IV). The timescale for data collection ranged from one week (I) to six weeks after discharge (II–IV). The Patient Continuity of Care Questionnaire (PCCQ), a 27-item questionnaire to measure patients’ perceptions of continuity of care, was translated and culturally adapted to Swedish. The factor structure was reviewed (II), and a short version including 12 of the items was evaluated (III). A conceptual model was constructed to examine the associations between continuity of care, perceived control, self-care, health-related quality of life, and hospital readmissions (IV). The data was analyzed using descriptive and non-parametric statistics (I), confirmatory factor analysis, test-retest estimation (II), the Rasch measurement model (III), and structural equation modeling (SEM) (IV).Results: Patients in study I were hospitalized due to heart failure, and in study II–IV, patients hospitalized due to angina pectoris, atrial fibrillation, heart failure and myocardial infarction were included. Most patients received a written discharge summary. Despite this, many patients lacked knowledge about whom to contact regarding deterioration or questions after discharge. The patients described feeling unsafe and experienced a lack of clarity about their primary healthcare contact (I). The confirmatory factor analysis of the Swedish version of the PCCQ overall confirmed the sixfactor structure, but minor revisions were made to achieve a satisfactory model fit. The ordinal alpha for the subscales was satisfactory and ranged between 0.82 and 0.95 (II). In the 12-item short version (PCCQ-12) (III), two pairs of items showed signs of response dependence and the first two response options were disordered in all items. Apart from this, the PCCQ-12 was found to be a unidimensional questionnaire with sound psychometric properties and the ordinal alpha was 0.94. Patients most commonly reported lower levels of continuity of care on matters relating to management continuity after discharge. In particular, women, older patients, and those hospitalized due to angina pectoris reported lower levels of continuity. In study IV, the conceptual model suggested that patients who perceive higher levels of continuity of care also experience higher levels of perceived control and perform self-care to a greater extent, significantly improving their health-related quality of life and reducing the risk of hospital readmission. The association between continuity of care and self-care was mediated by perceived control.Conclusion: Patients’ perceptions of continuity of care after hospitalization due to cardiac conditions can be measured using the PCCQ. The longer, revised PCCQ can be used to evaluate the three types of continuity individually, and the PCCQ-12 can be used in a time-restricted setting or to reduce respondents’ burden. Even though most patients received a written discharge summary, this was not enough for them to perceive continuity of care after hospitalization. An area of concern is management continuity and elderly patients, women, and those hospitalized due to angina pectoris. Finally, according to the conceptual model, interventions aiming to improve health-related quality of life or reduce readmission should include actions to facilitate continuity of care.