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: HILLIARD, MARISA - Baylor College Of Medicine; MINARD, CHARLES - Baylor College Of Medicine; MARRERO, DAVID - University Of Arizona; DE WIT, MAARTJE - Vrije University; DUBOSE, STEPHANIE - Jaeb Center For Health Research; VERDEJO, ALANDRA - Jaeb Center For Health Research; JASER, SARAH - Vanderbilt University Medical Center; KRUGER, DAVIDA - Henry Ford Hospital; MONZAVI, ROSHANAK - University Of Southern California; SHAH, VIRAL - University Of Colorado; WADWA, R - University Of Colorado; WEINSTOCK, RUTH - State University Of New York (SUNY); Thompson, Deborah - Debbe; CAO, VIENA - Baylor College Of Medicine; ANDERSON, BARBARA - Baylor College Of Medicine

Submitted to: Families, Systems, & Health
Publication Type: Peer Reviewed Journal
Publication Acceptance Date: 12/7/2020
Publication Date: 4/26/2021
Citation: Hilliard, M.E., Minard, C.G., Marrero, D.G., De Wit, M., Dubose, S.N., Verdejo, A., Jaser, S.S., Kruger, D., Monzavi, R., Shah, V., Wadwa, R.P., Weinstock, R.S., Thompson, D.J., Cao, V.T., Anderson, B.J. 2021. 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. Families, Systems, & Health. https://doi.org/10.1037/fsh0000507.
DOI: https://doi.org/10.1037/fsh0000507

Interpretive Summary: Despite the significant impact of diabetes on family, few instruments are available to assess health-related quality of life (HRQOL) among family members of people with type 1 diabetes (T1D). A series of 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 were developed and validated. The new T1DAL measures for parents and partners of people with T1D are reliable, valid, and ready for use in research and clinical settings. These measures will provide diabetes-specific insight into how T1D impacts quality of life in parents and partners of youth and adults with T1D.

Technical Abstract: Despite the significant impact of diabetes on family, few instruments are available to assess health-related quality of life (HRQOL) among family members of people with type 1 diabetes (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 multi-step 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. First, we conducted qualitative interviews (total parents/partners n=38) to develop draft measures and piloted them (total parents/partners n=20). Next, we tested the measures' psychometric properties. Participants (total parents/partners 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. The T1DAL measures for parents and partners demonstrated good internal consistency (alpha=0.80-0.88) and test-retest reliability (r=0.73-0.86). 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. The new T1DAL measures for parents and partners of people with T1D are reliable, valid, and ready for use in research and clinical settings.