Health-Related Quality of Life and Treatment Satisfaction in Parents and Children with Type 1 Diabetes Using Closed-Loop Control

Abstract Objective To develop and validate new measures of diabetes-specific health-related quality of life (HRQOL) for people with type 1 diabetes (T1D) that are brief, developmentally appropriate, and usable in clinical research and care. Here we report on the phases of developing and validating the self-report Type 1 Diabetes and Life (T1DAL) measures for children (age 8–11) and adolescents (age 12–17). Methods Measure development included qualitative interviews with youth and parents (n = 16 dyads) followed by piloting draft measures and conducting cognitive debriefing with youth (n = 9) to refine the measures. To evaluate the psychometric properties, children (n = 194) and adolescents (n = 257) at three T1D Exchange Clinic Network sites completed the age-appropriate T1DAL measure and previously validated questionnaires measuring related constructs. Using psychometric data, the investigators reduced the length of each T1DAL measure to 21 and 23 items, respectively, and conducted a final round of cognitive debriefing with six children and adolescents. Results The T1DAL measures for children and adolescents demonstrated good internal consistency (α = 0.84 and 0.89, respectively) and test–retest reliability (r = 0.78 and 0.80, respectively). Significant correlations between the T1DAL scores and measures of general quality of life, generic and diabetes-specific HRQOL, diabetes burden, and diabetes strengths demonstrated construct validity. Correlations with measures of self-management (child and adolescent) and glycemic control (adolescent only) demonstrated criterion validity. Factor analyses indicated four developmentally specific subscales per measure. Participants reported satisfaction with the measures. Conclusions The new T1DAL measures for children and adolescents with T1D are reliable, valid, and suitable for use in care settings and clinical research.

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Health related quality of life among children with Type I diabetes, Assiut city, Egypt

Journal of Nursing Education and Practice ◽

10.5430/jnep.v7n10p73 ◽

2017 ◽

Vol 7 (10) ◽

pp. 73 ◽

Cited By ~ 2

Author(s):

Marzoka A. Gadallah ◽

Taghreed Abdul-Aziz M. Ismail ◽

Naglaa Saad Abdel Aty

Keyword(s):

Quality Of Life ◽

Type 1 Diabetes ◽

Health Insurance ◽

Type I Diabetes ◽

Type I ◽

Health Related Quality ◽

Related Quality ◽

Health Related

Objective: Health related quality of life (HRQOL) is a multidimensional construct that includes physical and psychosocial functioning, has emerged as an important outcome in pediatric population with chronic health conditions. The study objectives are to measure the quality of life among children with type I diabetes compared to healthy peers and to determine factors affecting the QOL among children with type I diabetes.Methods: Analytic cross sectional study was conducted in Sidi Galal health insurance outpatient clinic for children with type 1 diabetes mellitus and a comparison group of healthy peers was taken from other outpatient clinics. A total of four hundred and twelve children, aged from 8-18 years with type 1 diabetes and four hundred and twelve healthy peers matched in age and sex were interviewed. Three tools were used for this study: Demographic questionnaire, Socio-economic scale, and Peds QL4.0 Generic Core Scale was used to measure HRQOL.Results: The mean age of studied children was 12.9 ± 3.2. More than 60% of children with diabetes had uncontrolled glycemic level and 60% of them were in low socio-economic level. Children with diabetes had significantly lower HRQOL than healthy children in all domains. Age, glycemic control status and birth order of the diabetic children showed no significance difference regarding the QOL. Disease duration affected only the emotional function of the QOL and females showed significantly higher score regarding school functioning. Social, school and the total QOL scores were significantly higher among children with highly educated mothers while father's education affected the emotional, school and total QOL scores. Children in the middle and high social class showed significantly higher scores regarding social, school and total QOL. Presence of diabetic parent positively affected the social functioning while had negative effect on the school function of children with type I diabetes.Conclusions and recommendations: Diabetes is negatively affecting all the QOL functioning of the children. We recommend that Integrated programs between child's home, school and health insurance clinics for educating and supporting children with diabetes to improve their HRQOL.

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