Health-Related Quality of Life in Parents and Partners of People With Type 1 Diabetes: Development and Validation of Type 1 Diabetes and Life (T1DAL) Measures

Authors

Marisa E Hilliard
Charles G Minard
David G Marrero
Maartje de Wit
Stephanie N DuBose
Alandra Verdejo
Sarah S Jaser
Davida Kruger
Roshanak Monzavi
Viral N Shah
R Paul Wadwa
Ruth S Weinstock
Debbe Thompson
Viena T Cao
Barbara J Anderson

Publication Date

6-1-2021

Journal

Families, Systems and Health

DOI

10.1037/fsh0000507

PMID

33900103

PMCID

PMC8376806

PubMedCentral® Posted Date

6-1-2022

PubMedCentral® Full Text Version

Author MSS

Published Open-Access

yes

Keywords

Adolescent, Child, Diabetes Mellitus, Type 1, Humans, Parents, Psychometrics, Quality of Life, Reproducibility of Results, Surveys and Questionnaires, Patient-reported Outcomes, Quality of life, Psychosocial, Assessment, Family

Abstract

Introduction: Despite the significant impact of type 1 diabetes (T1D) on family, few instruments are available to assess health-related quality of life (HRQOL) among family members of people with T1D. This study aimed to develop and evaluate the psychometric properties of new measures of diabetes-specific HRQOL for parents and partners of people with T1D. We report on the multistep development and validation process for the self-report Type 1 Diabetes and Life (T1DAL) measures, with versions for parents of youth age <8, 8-11, 12-17, and 18-25 years, and for partners of people age ≥18 years with T1D.

Method: First, we conducted qualitative interviews (total parents/partners n = 38) to develop draft measures and piloted them (total n = 20). Next, we tested the measures' psychometric properties. Participants (total across versions n = 813) at six T1D Exchange Clinic Network sites completed the appropriate T1DAL measure and validated measures of related constructs. We then reduced each T1DAL measure to 20-30 items in length based on psychometric data and participant feedback. Eleven participants reviewed the final measures via cognitive debriefing.

Results: The T1DAL measures for parents and partners demonstrated good internal consistency (α = .80-.88) and test-retest reliability (r = .73-.86). Correlations with measures of general quality of life, generic and diabetes-specific HRQOL, and diabetes burden demonstrated construct validity. Factor analyses identified 3-4 subscales/measure. Participants reported being satisfied with the shortened measures, which took 5-10 minutes to complete.

Discussion: The new T1DAL measures for parents and partners of people with T1D are reliable, valid, and ready for use in research and clinical settings.