title: Type 1 diabetes - impact on children and parents at diagnosis and 1 year subsequent to the child's diagnosis.
abstract: OBJECTIVE
  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.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
authors.forename: Lisbeth
authors.initials: L
authors.lastname: Jönsson
authors.forename: Pia
authors.initials: P
authors.lastname: Lundqvist
authors.forename: Irén
authors.initials: I
authors.lastname: Tiberg
authors.forename: Inger
authors.initials: I
authors.lastname: Hallström
mesh_terms: D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D003922:Diabetes Mellitus, Type 1 / Q000175:diagnosis* / Q000503:physiopathology; D006801:Humans; D011788:Quality of Life
keywords: children; follow-up; health-related quality of life; parents; satisfaction; type 1 diabetes