du.sePublications
Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • chicago-author-date
  • chicago-note-bibliography
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
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.
Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Göteborgs universitet.ORCID iD: 0000-0002-8267-592X
Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Uppsala universitet.ORCID iD: 0000-0001-8682-2045
Show others and affiliations
2017 (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
2017. Vol. 101, no 1, p. 139-146
Keywords [en]
Development, Patient-reported outcome, Type 1 diabetes, Type 2 diabetes, Validity
National Category
Health Sciences
Research subject
Health and Welfare
Identifiers
URN: urn:nbn:se:du-25651DOI: 10.1016/j.pec.2017.07.016PubMedID: 28736071OAI: oai:DiVA.org:du-25651DiVA, id: diva2:1128874
Available from: 2017-07-31 Created: 2017-07-31 Last updated: 2019-11-11Bibliographically approved
In thesis
1. Patient Perspectives brought to the Fore for Diabetes Care: Descriptions as well as Development and Testing of the Diabetes Questionnaire
Open this publication in new window or tab >>Patient Perspectives brought to the Fore for Diabetes Care: Descriptions as well as Development and Testing of the Diabetes Questionnaire
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aims were to describe perspectives of living with diabetes, to develop a patient-reported outcome and experience measure for the Swedish National Diabetes Register, and to initiate the evaluation of evidence of measurement quality for that measure. A further aim was to describe health-related quality of life and to assess its associations with glycaemic control.

Methods and results: In study I, aspects important to adults with diabetes embracing experiences of daily life and support from diabetes care were identified through 29 semi-structured qualitative interviews. In study II, those aspects were used to develop the Diabetes Questionnaire. Expert reviews, six cognitive interviews, and a regional survey of 1,599 adults with diabetes yielded supporting evidence for content and face validity, test-retest reliability, and answerability. For studies III-IV, the Diabetes Questionnaire and the SF-36v2 were presented to 4,976 adults with diabetes in a nationwide cross-sectional survey. In study III, adjusted regression analyses showed that adults with high-risk glycaemic control have lower health-related quality of life than those with well-controlled glycaemic control. In study IV, correlation, machine learning and adjusted regression analyses demonstrated support for construct validity. The Diabetes Questionnaire captures some SF-36v2 dimensions while adding information not targeted by clinical variables or the SF 36v2 and it is sensitive to differences between groups of glycaemic control.

Conclusion: The Diabetes Questionnaire has the potential to support clinical meetings and assessments and hence help to bring patients’ perspectives to the fore for diabetes care.

Place, publisher, year, edition, pages
Gothenburg: University of Gothenburg, 2019
Keywords
Diabetes Mellitus; Patient-Reported Outcome Measures; Qualitative Research; Surveys and Questionnaires; Cross-Sectional Studies
National Category
Endocrinology and Diabetes
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-31088 (URN)978-91-7833-668-5 (ISBN)978-91-7833-669-2 (ISBN)
Public defence
2019-11-29, Jubileumsaulan, Sahlgrenska universitetssjukhuset, Göteborg, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2019-11-11 Created: 2019-11-11 Last updated: 2019-11-11Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textPubMed

Authority records BETA

Svedbo Engström, MariaLeksell, Janeth

Search in DiVA

By author/editor
Svedbo Engström, MariaLeksell, Janeth
By organisation
Caring Science/Nursing
In the same journal
Patient Education and Counseling
Health Sciences

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 74 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • chicago-author-date
  • chicago-note-bibliography
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf