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.

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

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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. (PsycInfo Database Record (c) 2021 APA, all rights reserved) <strong xmlns:lang="en">Public Significance Statement—This study developed a set of validated questionnaires to measure health-related quality of life in parents and partners of people with type 1 diabetes. The experiences of family members are important and have implications for the health and well-being of people with diabetes, yet there have been few measures to accurately and reliably assess their quality of life. These new measures can be used in clinical practice and research settings. (PsycInfo Database Record (c) 2021 APA, all rights reserved)

Original languageEnglish
JournalFamilies, Systems and Health
DOIs
Publication statusAccepted/In press - 2021

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