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A disease-specific questionnaire for measuring patient-reported outcomes and experiences in the Swedish National Diabetes Register: Development and evaluation of content validity, face validity, and test-retest reliability
Univ Gothenburg, Sahlgrenska Acad, Inst Med, Gothenburg; Dalarna Univ, Sch Educ Hlth & Social Studies, Falun.
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Medical Sciences, Clinical diabetology and metabolism. Dalarna Univ, Sch Educ Hlth & Social Studies, Falun.
Sophiahemmet Univ, Stockholm; Karolinska Inst, Dept Clin Sci & Educ, Södersjukhuset, Stockholm.
Univ Gothenburg, Sahlgrenska Acad, Inst Med, Gothenburg; Sahlgrens Univ Hosp, Gothenburg.
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2018 (English)In: Patient Education and Counseling, ISSN 0738-3991, E-ISSN 1873-5134, Vol. 101, no 1, p. 139-146Article in journal (Refereed) Published
Abstract [en]

Objective: To describe the development and evaluation of the content and face validity and test-retest reliability of a disease-specific questionnaire that measures patient-reported outcomes and experiences for the Swedish National Diabetes Register for adult patients who have type 1 or type 2 diabetes.

Methods: In this methodological study, a questionnaire was developed over four phases using an iterative process. Expert reviews and cognitive interviews were conducted to evaluate content and face validity, and a postal survey was administered to evaluate test-retest reliability.

Results: The expert reviews and cognitive interviews found the disease-specific questionnaire to be understandable, with relevant content and value for diabetes care. An item-level content validity index ranged from 0.6-1.0 and a scale content validity/average ranged from 0.7-1.0. The fourth version, with 33 items, two main parts and seven dimensions, was answered by 972 adults with type 1 and type 2 diabetes (response rate 61%). Weighted Kappa values ranged from 0.31-0.78 for type 1 diabetes and 0.27-0.74 for type 2 diabetes.

Conclusions: This study describes the initial development of a disease-specific questionnaire in conjunction with the NDR. Content and face validity were confirmed and test-retest reliability was satisfactory. Practice implications: With the development of this questionnaire, the NDR becomes a clinical tool that contributes to further understanding the perspectives of adult individuals with diabetes.

Place, publisher, year, edition, pages
2018. Vol. 101, no 1, p. 139-146
Keyword [en]
Type 1 diabetes, Type 2 diabetes, Patient-reported outcome, Development, Validity
National Category
Occupational Health and Environmental Health Endocrinology and Diabetes Nursing Social and Clinical Pharmacy Public Health, Global Health, Social Medicine and Epidemiology
Identifiers
URN: urn:nbn:se:uu:diva-343873DOI: 10.1016/j.pec.2017.07.016ISI: 000423474300020PubMedID: 28736071OAI: oai:DiVA.org:uu-343873DiVA, id: diva2:1189350
Funder
Novo NordiskSwedish Association of Local Authorities and RegionsSwedish Diabetes Association
Available from: 2018-03-09 Created: 2018-03-09 Last updated: 2018-03-09Bibliographically approved

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Leksell, Janeth

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