Table 1 Summary of outcomes in studies that assess the burden of T1D on children
Tool | Measure | Main Findings |
|---|---|---|
Pediatric Quality of Life Inventory (PedsQL 4.0) [17, 39,40,41,42,43,44,45,46,47,48] | Overall QOL (Physical health, psychological health) | • Adolescents showed worse QoL than younger children. • Gender was a significant predictor of overall QoL, with boys experiencing better QoL. • School functioning was better for boys. • Adolescent girls experienced worse QoL as they grew older. |
Pediatric Quality of Life Inventory (PedsQL 3.0) [18,19,20,21, 24, 40, 44, 47, 49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65] | Diabetes QoL (Diabetes symptoms, treatment barriers, treatment adherence, worry, communication) | • Adolescents experienced worse QoL. • Gender was a predictor, with girls having worse QoL than boys. • Patients with more depressive symptoms showed worse scores and worse QoL. • Acceptance of diagnosis and adherence to therapy led to better QoL. • Patients using CSII experienced better QoL than patients using MDI. • Patients using primary control coping methods showed better QoL. |
Diabetes Quality of Life for Youth (DQOLY) [22, 23, 36, 66,67,68,69,70] | Overall QoL (Impact of diabetes, worry about diabetes, health perception, life satisfaction) | • Boys experienced better QoL than girls, in general. • Girls experienced more worry and reported lower self-rated health. • Adolescents experienced worse QoL when compared to younger patients. • Patients who desire to decrease their weight experienced worse QoL. • Patients who accept their diagnosis and integrate diabetes within their self-identity have better QoL and greater life satisfaction. Recently diagnosed patients [71] • Children (10 years and older) diabetes-related worries decreased over the first 9 months of diagnosis. • Impact of diabetes and satisfaction of life score showed an improvement in patients over the 9 months of diagnosis. |
Children’s Depression Inventory (CDI) [24,25,26, 48, 54, 55, 72, 73] | Depression | • More female patients experienced depression than male patients. • Adolescents experienced more depression than younger children. Recently diagnosed patients [74] • Children (age 8–13) showed elevated levels of depression at diagnosis which significantly decreased 12 months after diagnosis. |
Perceived adherence to self-care regimen | • Children who accept their diabetes diagnosis and integrate within their self-identity were more confident and showed better self-care. • Patients who use an insulin pump showed better self-care than patients who use injectables. • Patients who had a high acceptance of the diagnosis and high adherence to treatment showed better self-care. | |
State-Trait Anxiety Inventory for Children (STAIC) [54, 62, 75, 76] | State anxiety (at the moment) and trait anxiety (in general) | • Patients had moderate state and trait anxiety. |
Problem Areas in Diabetes for Pediatrics (PAID-Peds) [53, 64, 77] | Burden related to typical problems and issues in diabetes management | • Patients with moderate to severe depression showed a higher burden. • Patients with high resilience showed lower burden levels. • Issues that were experienced most by patients included friends or family not understanding the difficulty of diabetes, friends or family acting like a “diabetes police”, worrying about the future and complications, and experiencing interference in having fun with friends. |