title: Assessing diabetes-related quality of life of youth with type 1 diabetes in routine clinical care: the MIND Youth Questionnaire (MY-Q).
abstract: OBJECTIVE
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Medical Psychology, VU University Medical Center, Amsterdam, The Netherlands. m.dewit@vumc.nl
authors.forename: Maartje
authors.initials: M
authors.lastname: de Wit
authors.forename: Per
authors.initials: P
authors.lastname: Winterdijk
authors.forename: Henk-Jan
authors.initials: HJ
authors.lastname: Aanstoot
authors.forename: Barbara
authors.initials: B
authors.lastname: Anderson
authors.forename: Thomas
authors.initials: T
authors.lastname: Danne
authors.forename: Larry
authors.initials: L
authors.lastname: Deeb
authors.forename: Karin
authors.initials: K
authors.lastname: Lange
authors.forename: Anja Østergren
authors.initials: AØ
authors.lastname: Nielsen
authors.forename: Soren
authors.initials: S
authors.lastname: Skovlund
authors.forename: Mark
authors.initials: M
authors.lastname: Peyrot
authors.forename: Frank
authors.initials: F
authors.lastname: Snoek
mesh_terms: D000293:Adolescent; D001828:Body Image; D002648:Child; D003922:Diabetes Mellitus, Type 1 / Q000097:blood / Q000523:psychology* / Q000628:therapy; D005247:Feeding Behavior; D005260:Female; D006442:Glycated Hemoglobin / Q000032:analysis; D006801:Humans; D008297:Male; D010290:Parents; D017060:Patient Satisfaction; D011788:Quality of Life; D015203:Reproducibility of Results; D012919:Social Behavior; D011795:Surveys and Questionnaires
chemical_list: D006442:Glycated Hemoglobin