Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: the MIND Youth Questionnaire (MY-Q)

ABSTRACT Aim It is recommended to assess health‐related quality of life (HRQoL) in teenagers with diabetes as part of their ongoing medical care. Here, we describe the development and psychometric evaluation of the Monitoring Individual Needs in Diabetes Youth Questionnaire (MY‐Q), a multi‐dimension...

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Bibliographic Details
Published in:Pediatric diabetes 2012-12, Vol.13 (8), p.638-646
Main Authors: de Wit, Maartje, Winterdijk, Per, Aanstoot, Henk-Jan, Anderson, Barbara, Danne, Thomas, Deeb, Larry, Lange, Karin, Nielsen, Anja Østergren, Skovlund, Soren, Peyrot, Mark, Snoek, Frank
Format: Article
Language:English
Subjects:
Adolescent
adolescents
Body Image
Child
Diabetes Mellitus, Type 1 - blood
Diabetes Mellitus, Type 1 - psychology
Diabetes Mellitus, Type 1 - therapy
Feeding Behavior
Female
Glycated Hemoglobin A - analysis
health-related quality of life
Humans
Male
Parents
Patient Satisfaction
Quality of Life
questionnaire
Reproducibility of Results
Social Behavior
Surveys and Questionnaires
type 1 diabetes
validation
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Summary:ABSTRACT Aim It is recommended to assess health‐related quality of life (HRQoL) in teenagers with diabetes as part of their ongoing medical care. Here, we describe the development and psychometric evaluation of the Monitoring Individual Needs in Diabetes Youth Questionnaire (MY‐Q), a multi‐dimensional self‐report HRQoL questionnaire designed for use in pediatric diabetes care. Design and methods In expert meetings, characteristics and domains of interest were defined. Existing questionnaires were reviewed, topics selected, and new items added, resulting in the 36‐item MY‐Q. To test face validity, we interviewed 22 teenagers. In addition, 84 teenagers with type 1 diabetes (age 10–18 yr) completed the MY‐Q and Pediatric Quality of Life Inventory (PedsQL) generic and diabetes‐modules to examine psychometric properties. Hemoglobin A1c (HbA1c) values were obtained by chart audit. Results The MY‐Q consists of seven subscales (social impact, parents, diabetes control perceptions, responsibility, worries, treatment satisfaction, and body image and eating behavior) as well as general HRQoL and emotional well‐being. Cronbach's alpha for the total scale was 0.80. Strong correlations between MY‐Q total and PedsQL generic and diabetes‐module scores (r = 0.58 and r = 0.71, p 
ISSN:1399-543X
1399-5448
DOI:10.1111/j.1399-5448.2012.00872.x