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Measuring patients' experiences of continuity of care in a primary care context - Development and evaluation of a patient-reported experience measure
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.ORCID iD: 0000-0003-0338-7610
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linnaeus University, Linnaeus Knowledge Environments, Sustainable Health. Region Kalmar County, Sweden.ORCID iD: 0000-0002-0961-5250
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linnaeus University, Linnaeus Knowledge Environments, Sustainable Health. Region Kalmar County, Sweden.ORCID iD: 0000-0002-4257-282X
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.ORCID iD: 0000-0001-6157-3644
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2024 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 80, no 1, p. 387-398Article in journal (Refereed) Published
Abstract [en]

BackgroundContinuity of care is viewed as a hallmark of high-quality care in the primary care context. Measures to evaluate the quality of provider performance are scarce, and it is unclear how the assessments correlate with patients' experiences of care as coherent and interconnected over time, consistent with their preferences and care needs.AimTo develop and evaluate a patient-reported experience measure of continuity of care in primary care for patients with complex care needs.MethodThe study was conducted in two stages: (1) development of the instrument based on theory and empirical studies and reviewed for content validity (16 patients with complex care needs and 8 experts) and (2) psychometric evaluation regarding factor structure, test-retest reliability, internal consistency reliability, and convergent validity. In all, 324 patients participated in the psychometric evaluation.ResultsThe Patient Experienced Continuity of care Questionnaire (PECQ) contains 20 items clustered in four dimensions of continuity of care measuring Information (four items), Relation (six items), Management (five items), and Knowledge (five items). Overall, the hypothesized factor structure was indicated. The PECQ also showed satisfactory convergent validity, internal consistency, and stability.Conclusion/ImplicationsThe PECQ is a multidimensional patient experience instrument that can provide information on various dimensions useful for driving quality improvement strategies in the primary care context for patients with complex care needs.Patient or Public ContributionPatients have participated in the content validation of the items.

Place, publisher, year, edition, pages
John Wiley & Sons, 2024. Vol. 80, no 1, p. 387-398
Keywords [en]
classic test theory, complex care needs, continuity of care, instrument development, primary healthcare, psychometric evaluation
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
URN: urn:nbn:se:lnu:diva-123645DOI: 10.1111/jan.15792ISI: 001034667700001PubMedID: 37485735Scopus ID: 2-s2.0-85165453712OAI: oai:DiVA.org:lnu-123645DiVA, id: diva2:1787459
Available from: 2023-08-14 Created: 2023-08-14 Last updated: 2025-02-20Bibliographically approved
In thesis
1. Patients’ experiences of continuity of care: What is needed and how can it be measured?
Open this publication in new window or tab >>Patients’ experiences of continuity of care: What is needed and how can it be measured?
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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. 

Place, publisher, year, edition, pages
Växjö: Linnaeus University Press, 2023. p. 107
Series
Linnaeus University Dissertations ; 506
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-124894 (URN)10.15626/LUD.506.2023 (DOI)9789180820790 (ISBN)9789180820806 (ISBN)
Public defence
2022-10-20, Azur, Hus vita, Kalmar, 09:00 (Swedish)
Opponent
Supervisors
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2017-00202
Available from: 2023-09-26 Created: 2023-09-26 Last updated: 2025-03-17Bibliographically approved

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Ljungholm, LindaÅrestedt, KristoferFagerström, CeciliaDjukanovic, IngridEkstedt, Mirjam

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