Introduction and Objective: Type 1 diabetes (T1D) causes significant stress in affected individuals, which may be worse in those from resource-limited countries. We assessed diabetes distress and quality of life (QOL) among Ugandan children and young adults with T1D and their parents.Methods: Patients aged 4-26yr from two paediatric T1D clinics in Kampala participated. Diabetes distress was assessed using the Problem Areas in Diabetes (PAID) tool for ages 7-12yrs (PAID-C) and their parents (P-PAID-C), and for ages 13-26yrs (PAID T) and their parents for those <18yrs (P- PAID T). Scores ≥40 indicate severe diabetes distress. QOL was assessed using the Diabetes Attitudes Wishes and Needs questionnaire (DAWN) for patients ages 10-26yrs; higher scores indicate worse QOL.Results: We enrolled 104 patients, mean age 16±6yrs, 52% male, diabetes duration 6.5±4.3yrs, Mean A1c 11.1±2.79% and their parents. Mean diabetes distress scores were categorized as severe across all groups, but were higher in both parental groups compared to their children (P-PAID-C: 70.63 vs. PAID-C: 51.39, p<0.001) and young adults (P-PAID-T 62.4 vs PAID-T 48.33, p<0.001). The mean DAWN score was low (25±12.9%), with the greatest negative impacts observed in the areas of parental issues (46%) and health perception (43%). Higher HBA1c ≥7.5% was associated with poorer quality of life, p=0.049.Conclusion: Ugandan children and youth with T1D have poor QOL, particularly regarding health perception and parental issues. Poor QOL is associated with worse glycemic control. Severe diabetes stress is seen in children and young adults and is even greater in their parents, highlighting the need for individual and family psychosocial support in resource-limited settings.
T.W. Piloya: Research Support; Abbott. Other Relationship; Novo Nordisk. C. Nyangabyaki: None. N. Jemima: None. D. Malinga: None. M. Nakitto: None. B.M. Nathan: None. S. Beasley: None. E. Pappenfus: None. A. Moran: Research Support; Abbott. Consultant; Abata Therapeutics. Other Relationship; Novo Nordisk.
NIH (R01DK126726)
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