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Patient Perspectives brought to the Fore for Diabetes Care: Descriptions as well as Development and Testing of the Diabetes Questionnaire
Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Department of Molecular and Clinical Medicine, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.ORCID iD: 0000-0002-8267-592X
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 [en]
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: urn:nbn:se:du-31088ISBN: 978-91-7833-668-5 (print)ISBN: 978-91-7833-669-2 (electronic)OAI: oai:DiVA.org:du-31088DiVA, id: diva2:1369231
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
List of papers
1. What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register
Open this publication in new window or tab >>What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register
2016 (English)In: BMJ Open, ISSN 2044-6055, E-ISSN 2044-6055, Vol. 6, no 3, article id e010249Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes.

DESIGN: Semistructured qualitative interviews analysed using content analysis.

SETTING: Hospital-based outpatient clinics and primary healthcare clinics in Sweden.

PARTICIPANTS: 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14).

INCLUSION CRITERIA: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics.

RESULTS: To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme 'To live a good life with diabetes' constituting the two main categories 'How I feel and how things are going with my diabetes' and 'Support from diabetes care in managing diabetes' including five different categories.

CONCLUSIONS: Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

National Category
Nursing
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-21298 (URN)10.1136/bmjopen-2015-010249 (DOI)000374052300086 ()27013595 (PubMedID)
Funder
Novo Nordisk
Available from: 2016-03-29 Created: 2016-03-29 Last updated: 2019-11-11
2. 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.
Open this publication in new window or tab >>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.
Show others...
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.

Keywords
Development, Patient-reported outcome, Type 1 diabetes, Type 2 diabetes, Validity
National Category
Health Sciences
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-25651 (URN)10.1016/j.pec.2017.07.016 (DOI)28736071 (PubMedID)
Available from: 2017-07-31 Created: 2017-07-31 Last updated: 2019-11-11Bibliographically approved
3. Health-related quality of life and glycaemic control among adults with type 1 and type 2 diabetes: a nationwide cross-sectional study
Open this publication in new window or tab >>Health-related quality of life and glycaemic control among adults with type 1 and type 2 diabetes: a nationwide cross-sectional study
Show others...
2019 (English)In: Health and Quality of Life Outcomes, ISSN 1477-7525, E-ISSN 1477-7525, Vol. 17, no 1, article id 141Article in journal (Refereed) Published
Abstract [en]

Background: Health-related quality of life and glycaemic control are some of the central outcomes in clinical diabetes care and research. The purpose of this study was to describe the health-related quality of life and assess its association with glycaemic control in adults with type 1 and type 2 diabetes in a nationwide setting.

Methods: In this cross-sectional survey, people with type 1 (n = 2479) and type 2 diabetes (n = 2469) were selected at random without replacement from the Swedish National Diabetes Register. Eligibility criteria were being aged 18–80 years with at least one registered test of glycated haemoglobin (HbA1c) the last 12 months. The generic 36- item Short Form version 2 (SF-36v2) was answered by 1373 (55.4%) people with type 1 diabetes and 1353 (54.8%) with type 2 diabetes.

Results: Correlation analyses showed weak correlations between scores on the SF-36v2 and glycaemic control for both diabetes types. After the participants were divided into three groups based on their levels of HbA1c, multivariate regression analyses adjusted for demographics, other risk factors and diabetes complications showed that among participants with type 1 diabetes, the high-risk group (≥70 mmol/mol/8.6%) had statistically significantly lower means in five out of eight domains of the SF-36v2 and the mental component summary measure, as compared with the well-controlled group (< 52 mmol/mol/6.9%). Among the participants with type 2 diabetes, the high-risk group had the lowest statistically significantly means in seven domains and both summary measures.

Conclusions: Among people with type 1 and type 2 diabetes, adults with high-risk HbA1c levels have lower levels of health-related quality of life in most but not all domains of the SF-36v2. This finding was not explained by demographics, other risk factors, or diabetes complications. The weak individual-level correlations between HRQOL scores and levels of glycaemic control argues for the need to not focus exclusively on either HbA1c levels or HRQOL scores but rather on both because both are important parts of a complex, life-long, challenging condition.

Keywords
Diabetes mellitus, type 1, Diabetes mellitus, type 2, Health-related quality of life, SF-36, Cross-sectional study
National Category
Endocrinology and Diabetes
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-30618 (URN)10.1186/s12955-019-1212-z (DOI)000480805700002 ()31412881 (PubMedID)2-s2.0-85071014854 (Scopus ID)
Available from: 2019-08-16 Created: 2019-08-16 Last updated: 2019-11-11Bibliographically approved
4. A new diabetes questionnaire to add patients’ perspectives to diabetes care: A nationwide cross-sectional study among adults with type 1 and type 2 diabetes.
Open this publication in new window or tab >>A new diabetes questionnaire to add patients’ perspectives to diabetes care: A nationwide cross-sectional study among adults with type 1 and type 2 diabetes.
Show others...
2019 (English)Conference paper, Oral presentation with published abstract (Refereed)
National Category
Endocrinology and Diabetes
Research subject
Health and Welfare
Identifiers
urn:nbn:se:du-31087 (URN)
Conference
EASD (The European Association for the Study of Diabetes) Annual meeting 2019, Barcelona, 2019-09-20
Available from: 2019-11-11 Created: 2019-11-11 Last updated: 2019-11-11Bibliographically approved

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