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Title: Caring for someone with type 1 diabetes: Health-related quality of life of parents and partners

item HILLIARD, MARISA - Baylor College Of Medicine
item MINARD, CHARLES - Baylor College Of Medicine
item MARRERO, DAVID - University Of Arizona
item DE WIT, MAARTJE - Vu University Medical Center
item Thompson, Deborah - Debbe
item VERDEJO, ALANDRA - Jaeb Center For Health Research
item ANDERSON, BARBARA - Baylor College Of Medicine

Submitted to: Diabetes
Publication Type: Abstract Only
Publication Acceptance Date: 2/1/2019
Publication Date: 6/1/2019
Citation: Hilliard, M.E., Minard, C.G., Marrero, D.G., De Wit, M., Thompson, D.J., Verdejo, A., Anderson, B. 2019. Caring for someone with type 1 diabetes: Health-related quality of life of parents and partners [abstract]. Diabetes. 68(Supplement 1):853-P.

Interpretive Summary:

Technical Abstract: Health-related quality of life (HRQoL) is a key patient-reported outcome in care and research. The few instruments that assess the HRQoL of parents and partners of people with type 1 diabetes (T1D) emphasize caregiving burden or are usually proxy measures (reporting on behalf of person with T1D). We created measures assessing parents' and partners' own HRQoL as part of a larger study to develop and validate a suite of instruments to measure HRQoL in children through older adults with T1D. Qualitative interviews (n=81 people with T1D and parents/partners, 8 providers) identified HRQoL themes to include. Drafts were piloted with n=41. Resulting measures were validated with n=644 parents and n=186 partners from 6 T1D Exchange sites across the U.S., including the HRQoL measure (2 times, approx. 3 months apart), measures of relevant constructs (SF-12, Satisfaction with Life Scale, Diabetes Family Impact Scale, Partner Diabetes Distress Scale), and medical chart-confirmed HbA1c. We report exploratory factor analyses (Promax rotation) and psychometric data for the 4 parent measures (child age <8, 8-11, 12-17, 18-25) and 1 partner measure (person with T1D age >=18). Each measure had a unique set of 21-30 positive and negative items loading on 3-4 scales. Reliability was good: total score a range=0.80-0.88, test-retest r range=0.75-0.86. Significant correlations between the total HRQoL scores and measures of general quality of life (r=0.30-0.53), mental well-being (r=0.37-0.53), T1D family impact (parents of youth, r=-0.64-0.72), and diabetes distress (parents/partners of adults, r=-0.76-0.75) indicated construct validity. Scores were not correlated with HbA1c. The new measures of T1D-specific HRQoL in parents and partners have relevant items and factors, and demonstrate strong psychometric properties. These innovative tools will permit assessment of the experiences of parents and partners of people with T1D for use in research and practice.