Type 1 diabetes - impact on children and parents at diagnosis and 1 year subsequent to the
child's diagnosis
Sammanfattning
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. Published by arrangement with John Wiley & Sons.