Quality of Life Evaluation Criteria in the Rehabilitation of Chronically Ill Children
In spite of the development quality of life assessment instruments in paediatric evaluation research, experiences with the quality of these instruments in paediatric rehabilitation is lacking.
The aim of the study is
1.) a methodological assessment of the useability of disease specific modules of an assessment instrument to measure quality of life.
2.) the description of quality of life in chronically ill children at the start of rehabilitation as well as factors influencing it,
3.) the description of changes over time in quality of life as concerns course of rehabilitation as well as
4.) the convergence and divergence between children's and parents ratings.
The study design is a longitudinal prospective study in which children with asthma, atopic dermatitis and obesity between 8 and 18 years were included in co-operation with 7 participating rehabilitation clinics.
Quality of life in children as well as relevant clinical and psychosocial determinants as well as parallel parents relating of children's and own quality of life, in addition to sociodemographic and clinical data, were assessed.
Assessment points were T1 before the start of inpatient rehabilitation program, T2 before discharge, T3 three and T4 twelve months after the rehabilitation intervention.
A total of 1020 children could be included in the study at T1 (86,1% response rate). At T4, the response rate, as related to T1, was 63,1% in children and 54% in parents.
The psychometric characteristics of the KINDL as well as its disease specific modules were satisfactory as regards reliability, validity and sensitivity. There were significant changes in KINDL with medium to high effects sizes from before and 12 months after rehabilitation, especially in children with obesity. These changes were dependent on age, gender, diagnosis and severity of the chronic condition. Relevant predictors of quality of life one year after rehabilitation were social support, rehabilitation expectation, stress, coping and internal control.
Children and parent judgement diverged with regard to higher rating of own quality of life by children as compared to parents.