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J Pediatr Psychol. 2019 Oct 29. pii: jsz083. doi: 10.1093/jpepsy/jsz083. [Epub ahead of print]

Assessing Health-Related Quality of Life in Children and Adolescents with Diabetes: Development and Psychometrics of the Type 1 Diabetes and Life (T1DAL) Measures.

Author information

1
Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital.
2
Dan L Duncan Institute for Clinical and Translational Research, Baylor College of Medicine.
3
University of Arizona Health Sciences.
4
Department of Medical Psychology, Amsterdam UMC, Vrije Universiteit Amsterdam.
5
USDA/ARS Children's Nutrition Research Center, Department of Pediatrics, Baylor College of Medicine.
6
Jaeb Center for Health Research.
7
Center for Endocrinology, Diabetes and Metabolism, Children's Hospital Los Angeles and Keck School of Medicine of University of Southern California.
8
Barbara Davis Center for Diabetes, University of Colorado Anschutz Medical Campus.
9
Department of Pediatrics, Vanderbilt University Medical Center.

Abstract

OBJECTIVE:

To develop and validate new measures of diabetes-specific health-related quality of life (HRQOL) for people with type 1 diabetes (T1D) that are brief, developmentally appropriate, and usable in clinical research and care. Here we report on the phases of developing and validating the self-report Type 1 Diabetes and Life (T1DAL) measures for children (age 8-11) and adolescents (age 12-17).

METHODS:

Measure development included qualitative interviews with youth and parents (n = 16 dyads) followed by piloting draft measures and conducting cognitive debriefing with youth (n = 9) to refine the measures. To evaluate the psychometric properties, children (n = 194) and adolescents (n = 257) at three T1D Exchange Clinic Network sites completed the age-appropriate T1DAL measure and previously validated questionnaires measuring related constructs. Using psychometric data, the investigators reduced the length of each T1DAL measure to 21 and 23 items, respectively, and conducted a final round of cognitive debriefing with six children and adolescents.

RESULTS:

The T1DAL measures for children and adolescents demonstrated good internal consistency (α = 0.84 and 0.89, respectively) and test-retest reliability (r = 0.78 and 0.80, respectively). Significant correlations between the T1DAL scores and measures of general quality of life, generic and diabetes-specific HRQOL, diabetes burden, and diabetes strengths demonstrated construct validity. Correlations with measures of self-management (child and adolescent) and glycemic control (adolescent only) demonstrated criterion validity. Factor analyses indicated four developmentally specific subscales per measure. Participants reported satisfaction with the measures.

CONCLUSIONS:

The new T1DAL measures for children and adolescents with T1D are reliable, valid, and suitable for use in care settings and clinical research.

KEYWORDS:

developmental perspectives; diabetes; quality of life

PMID:
31665389
DOI:
10.1093/jpepsy/jsz083

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