Health-related quality of life (HRQOL) in parents of children suffering from renal disease is often diminished by the illness burden experienced in daily life and by unfavorable ways of coping. Our aim was to examine the relationship between psychosocial strains perceived by parents, their ways of coping, and HRQOL. In an anonymous cross-sectional study, parents completed a questionnaire concerning psychosocial strains, coping strategies, and HRQOL, as well as sociodemographic and illness parameters. Study participants were recruited in two outpatient dialysis centers. Participating in the study were 195 parents (105 mothers, 90 fathers; age 43 +/- 8 years; representing 108 families) of children suffering from renal disease (age 12 +/- 5 years). Parents of children with chronic renal failure reported moderate HRQOL with parents of children undergoing dialysis experiencing more limitations in quality of life than parents of children living with a kidney graft and parents of children undergoing conservative treatment. Mothers experienced lower HRQOL and higher psychosocial strains than fathers. HRQOL was predicted by the coping strategies "focusing on child" (beta = -0.25), "improving marital relationship" (beta = 0.24), "seeking social support" (beta = -0.22) and "self-acceptation and growth" (beta =0 .19) as well as parents' perceived limitation by illness in daily life (beta = -0.15; explained variance 57%). In the comprehensive care for families with a child suffering from a renal disease, screening for psychosocial strains and ways of coping, along with applying interventions to strengthen adaptive coping strategies, may be a preventative means of improving parents' quality of life.

Little information is available on vocational rehabilitation and satisfaction with the quality of life in adult patients with early onset of end-stage renal disease (ESRD). A sample of 39 patients (mean age =26.7+/-6, range, 18 to 43 years, n =13 on dialysis, n =26 transplanted successfully) were required to report data on their vocational qualification and employment, and their degree of general and health-related satisfaction with life was surveyed. Data on psychosocial rehabilitation were collected by a structured questionnaire, whereas satisfaction with the quality of life was assessed with the standardized "Questionnaire on Satisfaction in Life (FLZ)." Fifty-eight percent of the patients had left school with certificates equivalent to high school graduation, 87% had completed vocational training and 67% were in paid employment. Forty-nine percent lived on their own or with a partner and 72% fully or partly earned their own living. The mean general and health-related satisfaction with life is significantly reduced compared to the general population. The patients were least satisfied in the areas 'partnership/sexuality' and 'family life/offspring' in general, as well as 'physical condition' and 'ability to relax' within health-orientated satisfaction. Final mean body height was 167.6+/-11.9 (SDS -1.54+/-1.59) for male and 153.77+/-8.29 for female patients (SDS -1.58+/-1.54). Thirty-six percent reported to be dissatisfied with their present body height compared to 4% of age-matched healthy controls. Positive perception of quality of life was significantly correlated to satisfaction with adult height ( r =0.41, P =0.008). Vocational rehabilitation of adult patients with early onset of ESRD achieves lower values than among the general population, however, more favorable percentages than among young adult patients or patients with adult onset of ESRD. The patients' self-evaluation of both their general and health-related quality of life proves to be clearly muted, which is a clear indication of the physical and psychological strain of living with a chronic disease.

In a multicentre study comprising five paediatric nephrology centres in Western Germany, psychosocial and educational parameters were assessed (during 1987) in 479 children and adolescents with chronic renal failure (CRF) in order to gain insight into their psychosocial adaptation to the disease. At the time of assessment, 31% of patients were on conservative treatment, 14% on haemodialysis, 9% on continuous ambulatory peritoneal dialysis and 46% had a functioning transplant. The mean age at assessment was 13.6 years. Additional disabilities were noted in 29% of patients. School attendance of the 233 children of school age was in general satisfactory; 22% of patients attended schools for disabled or handicapped children. Vocational training was frequently inadequate, especially for dialysed patients, and only 14 of 53 adolescents over 16 years had graduated. Of 49 adult patients, only 21 were in some form of employment. A lack of age-appropriate independence was observed in a large proportion (86%) of patients over 17 years, who continued to live with their parents or other persons taking care of them, whilst only 14% were living alone or with a partner. We conclude that, despite improved survival, psychosocial adaptation continues to be impaired in paediatric patients with CRF, especially in adolescents and those on dialysis.