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. Issue 1 (January 2018)

• Record Type: Journal Article
• Authors: Svedbo Engström, Maria; Leksell, Janeth; Johansson, Unn-Britt; Eeg-Olofsson, Katarina; Borg, Sixten; Palaszewski, Bo; Gudbjörnsdottir, Soffia
• Is Part Of: Patient education and counseling. Volume 101:Issue 1(2018)
• Page Start: 139
• Page End: 146
• Publication Date: 2018-01
• Subjects: Type 1 diabetes -- Type 2 diabetes -- Patient-reported outcome -- Development -- Validity; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2017.07.016
• Languages: English
• ISSNs: 0738-3991

Abstract

Highlights: The Swedish National Diabetes Register lacks patient-reported outcome measures. The disease-specific questionnaire has been developed based on patient voice. The questionnaire will be used as a tool to create prerequisite to implement person-centered care. The questionnaire will be used in the quality improvement process in the register. The questionnaire has relevant content and adds value for diabetes care. Abstract: 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.