HEALTH-RELATED QUALITY OF LIFE (HRQOL), HUMANISTIC AND PRODUCTIVITY BURDEN OF CAREGIVERS OF CHILDREN RECENTLY DIAGNOSED WITH TYPE 1 DIABETES (T1D): A CROSS-SECTIONAL STUDY IN THE UNITED KINGDOM (UK)
Author(s)
Oliver Guenther, PhD1, Omar Alsaleh Abdul Jabbar, PharmD, MHEcon2, Laurie Batchelder, BA, MSc, PhD3, Mireille Bonnemaire, MRS4, Humoon Afsardeir, MSc5.
1Paris, France, 2Health Economics and Value Assessment Department, Sanofi, Milan, Italy, 3IQVIA, Reading, United Kingdom, 4Sanofi, Paris, France, 5Sanofi, Reading, United Kingdom.
1Paris, France, 2Health Economics and Value Assessment Department, Sanofi, Milan, Italy, 3IQVIA, Reading, United Kingdom, 4Sanofi, Paris, France, 5Sanofi, Reading, United Kingdom.
OBJECTIVES: To quantify HRQoL, caregiver burden, humanistic and productivity burden among parental caregivers of children aged 8-21 years diagnosed (≤2 years) with T1D in the UK.
METHODS: A cross-sectional, non-interventional online survey was administered to 100 UK parental caregivers of children aged 8-21 years with T1D diagnosed ≤2 years prior (January-February 2025). Instruments included: EQ-5D-5L (UK utility score value set), WEll-being and Satisfaction of CAREgivers of Children with Diabetes Questionnaire (WE-CARE), Zarit Burden Interview-12 (ZBI-12), Work Productivity and Activity Impairment questionnaire (WPAI:SHP), and Modified Resource Utilization Questionnaire for T1D (mRUQ-T1DM). Descriptive statistics and regression analyses were conducted to address research objectives.
RESULTS: Caregivers (n=100) were predominantly male (59%), mean age 45 years; children had mean age 13 years, with 51% diagnosed in the past year. Although 72% children achieved HbA1c ≤8%, 78% experienced symptoms related to dysglycemia at least weekly. Mean EQ-5D-5L utility score was 0.80, representing a clinically meaningful decrement of −0.05 in caregivers versus the UK general population norm (0.85). Anxiety/depression was the most affected EQ-5D domain (80% reporting at least slight problems). Mean WE-CARE psychological well-being score was 38/65, indicating lower psychological well-being. ZBI-12 mean score was 19/48, indicating mild-to-moderate burden. Among employed caregivers (n=63), presenteeism was 47% and overall productivity loss was 51%; activity impairment across all caregivers was 56%. Caregivers of children diagnosed <1 year showed consistently worse outcomes across all instruments versus those diagnosed 1-2 years prior (EQ-5D utility: 0.732 vs 0.785). Regression analyses identified comorbid mental health conditions and shorter time since diagnosis as significant predictors of worse psychological well-being.
CONCLUSIONS: UK caregivers of recently diagnosed T1D children experienced measurable HRQoL decrements, mild-to-moderate caregiver strain, and substantial productivity losses, with the highest burden reported in the first-year post-diagnosis. These findings underscore the broader societal value of interventions delaying T1D onset.
METHODS: A cross-sectional, non-interventional online survey was administered to 100 UK parental caregivers of children aged 8-21 years with T1D diagnosed ≤2 years prior (January-February 2025). Instruments included: EQ-5D-5L (UK utility score value set), WEll-being and Satisfaction of CAREgivers of Children with Diabetes Questionnaire (WE-CARE), Zarit Burden Interview-12 (ZBI-12), Work Productivity and Activity Impairment questionnaire (WPAI:SHP), and Modified Resource Utilization Questionnaire for T1D (mRUQ-T1DM). Descriptive statistics and regression analyses were conducted to address research objectives.
RESULTS: Caregivers (n=100) were predominantly male (59%), mean age 45 years; children had mean age 13 years, with 51% diagnosed in the past year. Although 72% children achieved HbA1c ≤8%, 78% experienced symptoms related to dysglycemia at least weekly. Mean EQ-5D-5L utility score was 0.80, representing a clinically meaningful decrement of −0.05 in caregivers versus the UK general population norm (0.85). Anxiety/depression was the most affected EQ-5D domain (80% reporting at least slight problems). Mean WE-CARE psychological well-being score was 38/65, indicating lower psychological well-being. ZBI-12 mean score was 19/48, indicating mild-to-moderate burden. Among employed caregivers (n=63), presenteeism was 47% and overall productivity loss was 51%; activity impairment across all caregivers was 56%. Caregivers of children diagnosed <1 year showed consistently worse outcomes across all instruments versus those diagnosed 1-2 years prior (EQ-5D utility: 0.732 vs 0.785). Regression analyses identified comorbid mental health conditions and shorter time since diagnosis as significant predictors of worse psychological well-being.
CONCLUSIONS: UK caregivers of recently diagnosed T1D children experienced measurable HRQoL decrements, mild-to-moderate caregiver strain, and substantial productivity losses, with the highest burden reported in the first-year post-diagnosis. These findings underscore the broader societal value of interventions delaying T1D onset.
Conference/Value in Health Info
2026-11, ISPOR Europe 2026, Vienna, Austria
Value in Health, Volume 29, Issue 12S
Code
PCR223
Topic
Clinical Outcomes, Patient-Centered Research, Real World Data & Information Systems
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Diabetes/Endocrine/Metabolic Disorders (including obesity)