Type 1 diabetes (T1D) is an autoimmune disease that tends to occur in childhood, adolescence or early adulthood, but it may have its clinical onset at any age. There is no recovery from the disease and the patient needs life-long exogenous insulin. The incidence of T1D is rising in the young population. The annual increase in Hungary is 4.4% in the last two decades. Children and adolescents spend a lot of time at school without their parents who supervise the disease. Diabetes care is important in the school for the immediate and long-term well being, and even for the optimal academic performance. Teachers should know if a child has diabetes so they can provide help if needed. It is important to understand how the disease influences youths’ health-related quality of life (HRQoL). The aim of this study was to evaluate the HRQoL of children and adolescents with T1D using child self-report (CSR) and parent proxy-report (PPR), and to compare their HRQoL to the healthy peers.
A total of 355 diabetic youths (184 boys and 171 girls) with their parents (n=328) and 294 randomly chosen healthy children and adolescents (137 boys and 157 girls) with their parents (n=294) took part in this cross-sectional survey. All the participants were between aged 8-18. HRQoL was assessed with the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale (GCS) and 3.0 Diabetes Module (DM).
Comparing the diabetic and the non-diabetic groups by gender on the basis of GCS we found no statistically significant differences in quality of life neither in CSR or PPR, except of the Physical functioning in boys by the PPR. The parents rated the physical functioning significantly better for control boys than diabetic boys (p=0.005). The children and the parents’ concordance showed similarity in healthy groups. The parents of the diabetic group significantly underestimated their children’ HRQoL in all subscales of the GCS (Physical functioning CSR: 82.50 ±10.90 vs. PPR: 78.83 ±10.23; p<0.001, Emotional functioning CSR: 71.30 ±16.73 vs. PPR: 66.97 ±16.36; p<0.001, Social functioning CSR: 90.22 ±13.86 vs. PPR: 87.23 ±15.08; p<0.001, School functioning CSR: 74.27 ±14.78 vs. PPR: 72.67 ±14.76; p=0.003). It was the case in the DM. The parents significantly underestimated their children’s HRQoL in all subscales except of Communication subscale (Diabetes symptoms: CSR: 64.57 ±13.27 vs. PPR: 62.60 ±12.30; p<0.001, Treatment barriers: CSR: 70.27 ±19.81 vs. PPR 65.47 ±20.03; p<0.001, Treatment adherence: CSR: 83.58 ±13.32 vs. PPR: 80.10 ±14.17; p<0.001, Worry: CSR 69.87 ±20.43 vs. PPR: 62.91 ±21.30; p<0.001, Communication: CSR: 78.30 ±22.17 vs. PPR: 76.93 ±22.39; p=0.123). Analyzing the DM subscale scores we found that diabetic youths had no problems with the treatment adherence and communication, but they had low scores in the diabetes symptoms and the worry subscales. A similar pattern was found in the PPR.
In conclusion, children and adolescents with T1D live similar lives to their healthy peers, but due to their chronic illness, they have special problems that they can cope with. The diabetes somatic symptoms have a negative effect on their quality of life and can occur at any place and at any time. Knowledge of these symptoms may be important for the teachers who could give more freedom to the child, even during the lesson, to manage the situation. Parents seem to overprotect their chronically ill children. They suffer the disease worse than the children do themselves. The long-term parental fear may limit the diabetic child’s self-esteem and build panic issues in children as well, which may reduce both the child and parent efficacy for disease management. The role of the teacher can be important between the parent and child disagreement.
Reference
Gyürüs E, Patterson CC, Soltész Gy, and the Hungarian Childhood Diabetes Epidemiology Group. (2012). Twenty-one year of prospective incidence of childhood type 1 diabetes in Hungary – the rising trend continues (or peaks and highlands?). Pediatric Diabetes, 13, pp. 21-25
Silverstein J, Klingensmith G, Copeland K, et al. (2005). Care of children and adolescents with type 1 diabetes: A statement of the American Diabetes Association. Diabetes Care, 28, pp.186-212.
Klingensmith G, Kaufman F, Schatz D, et al. (American Diabetes Association). (2004). Diabetes care in the school and day care setting. Diabetes Care, 27(suppl 1) pp. S122-S128.
American Diabetes Association. (2011). Diabetes Care in the School and Day Care Setting. Diabetes Care, 34, (Suppl 1) pp. S70-S74.
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