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

Maartje de Wit; Per Winterdijk; Henk-Jan Aanstoot; Barbara Anderson; Thomas Danne; Larry Deeb; Karin Lange; Anja Østergren Nielsen; Soren Skovlund; Mark Peyrot; Frank Snoek; DAWN Youth Advisory Board

doi:10.1111/j.1399-5448.2012.00872.x

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

Maartje de Wit, Per Winterdijk, Henk-Jan Aanstoot, Barbara Anderson, Thomas Danne, Larry Deeb, Karin Lange, Anja Østergren Nielsen, Soren Skovlund, Mark Peyrot, Frank Snoek, DAWN Youth Advisory Board

Research output: Contribution to journal › Journal article › Research › peer-review

60 Citations (Scopus)

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 < 0.001) confirmed concurrent validity. Higher HbA1c was associated with lower diabetes control perceptions (r = -0.35, p = 0.001), worries (r = -0.24, p = 0.029), and body image and eating behavior (r = -0.26, p = 0.019) scores. Younger age was associated with higher diabetes control perceptions (r = -0.26, p = 0.020) and body image and eating behavior (r = -0.23, p = .038), and lower responsibility (r = 0.25, p = 0.027) scores.

CONCLUSION: The MY-Q is the first HRQoL questionnaire designed for use in clinical care. It has acceptable measurement properties and seems suitable for implementation in routine care of teenagers with diabetes.

Original language	English
Journal	Pediatric Diabetes
Volume	13
Issue number	8
Pages (from-to)	638-46
Number of pages	9
ISSN	1399-543X
DOIs	https://doi.org/10.1111/j.1399-5448.2012.00872.x
Publication status	Published - Dec 2012
Externally published	Yes

Keywords

Adolescent
Body Image
Child
Diabetes Mellitus, Type 1
Feeding Behavior
Female
Glycated Hemoglobin A
Humans
Male
Parents
Patient Satisfaction
Quality of Life
Reproducibility of Results
Social Behavior
Surveys and Questionnaires
Journal Article
Research Support, Non-U.S. Gov't

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Cite this

de Wit, M., Winterdijk, P., Aanstoot, H-J., Anderson, B., Danne, T., Deeb, L., Lange, K., Nielsen, A. Ø., Skovlund, S., Peyrot, M., Snoek, F., & DAWN Youth Advisory Board (2012). Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: the MIND Youth Questionnaire (MY-Q). Pediatric Diabetes, 13(8), 638-46. https://doi.org/10.1111/j.1399-5448.2012.00872.x

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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 < 0.001) confirmed concurrent validity. Higher HbA1c was associated with lower diabetes control perceptions (r = -0.35, p = 0.001), worries (r = -0.24, p = 0.029), and body image and eating behavior (r = -0.26, p = 0.019) scores. Younger age was associated with higher diabetes control perceptions (r = -0.26, p = 0.020) and body image and eating behavior (r = -0.23, p = .038), and lower responsibility (r = 0.25, p = 0.027) scores.CONCLUSION: The MY-Q is the first HRQoL questionnaire designed for use in clinical care. It has acceptable measurement properties and seems suitable for implementation in routine care of teenagers with diabetes.",

keywords = "Adolescent, Body Image, Child, Diabetes Mellitus, Type 1, Feeding Behavior, Female, Glycated Hemoglobin A, Humans, Male, Parents, Patient Satisfaction, Quality of Life, Reproducibility of Results, Social Behavior, Surveys and Questionnaires, Journal Article, Research Support, Non-U.S. Gov't",

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year = "2012",

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doi = "10.1111/j.1399-5448.2012.00872.x",

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de Wit, M, Winterdijk, P, Aanstoot, H-J, Anderson, B, Danne, T, Deeb, L, Lange, K, Nielsen, AØ, Skovlund, S, Peyrot, M, Snoek, F & DAWN Youth Advisory Board 2012, 'Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: the MIND Youth Questionnaire (MY-Q)', Pediatric Diabetes, vol. 13, no. 8, pp. 638-46. https://doi.org/10.1111/j.1399-5448.2012.00872.x

TY - JOUR

T1 - Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care

T2 - the MIND Youth Questionnaire (MY-Q)

AU - de Wit, Maartje

AU - Winterdijk, Per

AU - Aanstoot, Henk-Jan

AU - Anderson, Barbara

AU - Danne, Thomas

AU - Deeb, Larry

AU - Lange, Karin

AU - Nielsen, Anja Østergren

AU - Skovlund, Soren

AU - Peyrot, Mark

AU - Snoek, Frank

AU - DAWN Youth Advisory Board

PY - 2012/12

Y1 - 2012/12

N2 - 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 < 0.001) confirmed concurrent validity. Higher HbA1c was associated with lower diabetes control perceptions (r = -0.35, p = 0.001), worries (r = -0.24, p = 0.029), and body image and eating behavior (r = -0.26, p = 0.019) scores. Younger age was associated with higher diabetes control perceptions (r = -0.26, p = 0.020) and body image and eating behavior (r = -0.23, p = .038), and lower responsibility (r = 0.25, p = 0.027) scores.CONCLUSION: The MY-Q is the first HRQoL questionnaire designed for use in clinical care. It has acceptable measurement properties and seems suitable for implementation in routine care of teenagers with diabetes.

AB - 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 < 0.001) confirmed concurrent validity. Higher HbA1c was associated with lower diabetes control perceptions (r = -0.35, p = 0.001), worries (r = -0.24, p = 0.029), and body image and eating behavior (r = -0.26, p = 0.019) scores. Younger age was associated with higher diabetes control perceptions (r = -0.26, p = 0.020) and body image and eating behavior (r = -0.23, p = .038), and lower responsibility (r = 0.25, p = 0.027) scores.CONCLUSION: The MY-Q is the first HRQoL questionnaire designed for use in clinical care. It has acceptable measurement properties and seems suitable for implementation in routine care of teenagers with diabetes.

KW - Adolescent

KW - Body Image

KW - Child

KW - Diabetes Mellitus, Type 1

KW - Feeding Behavior

KW - Female

KW - Glycated Hemoglobin A

KW - Humans

KW - Male

KW - Parents

KW - Patient Satisfaction

KW - Quality of Life

KW - Reproducibility of Results

KW - Social Behavior

KW - Surveys and Questionnaires

KW - Journal Article

KW - Research Support, Non-U.S. Gov't

U2 - 10.1111/j.1399-5448.2012.00872.x

DO - 10.1111/j.1399-5448.2012.00872.x

M3 - Journal article

C2 - 23173877

SN - 1399-543X

VL - 13

SP - 638

EP - 646

JO - Pediatric Diabetes

JF - Pediatric Diabetes

IS - 8

ER -