Type 1 diabetes - impact on children and parents at diagnosis and 1 year subsequent to the child's diagnosis.

Background And Aim: When a child is diagnosed with type 1 diabetes, it is a complex and challenging situation for the whole family. The management of the disease places substantial demands on the family and they need to change their daily life. The short- and long-term impact on the family has rarely been described; therefore, the aim of this study was to describe and compare the disease impact on parents and children in terms of health-related quality of life (HRQOL) at diagnosis and 1 year subsequent to the child's diagnosis with type 1 diabetes. A further aim was to describe and compare the parents' satisfaction with the care received.

Method: Sixty-nine children and their parents were included. Parents independently filled in the PedsQL(™) Family Impact Module and the PedsQL(™) Health Care Satisfaction Generic Module. The PedsQL(™) 3.0 Diabetes Module was filled in by parents and children over the age of 5.

Results: Mothers reported a lower HRQOL than fathers both at the time of diagnosis (p = 0.003) and 1 year later (p = 0.041). For diabetes-specific HRQOL, children aged 5-7 years and their parents reported more worry than children and parents in older age groups (p = 0.037). Children aged 8-12 and 13-18 years reported a higher treatment adherence than mothers (p = 0.011 and p = 0.039, respectively); no differences were found between children and fathers. Both parents expressed overall satisfaction with the child's health care.

Conclusion: The family is affected during the first year after their child is diagnosed with type 1 diabetes. Both parents and the youngest children estimated a high degree of worry. The diabetes team needs to be aware of this and to take it into consideration.