Psychosocial rehabilitation and satisfaction with life in adults with childhood-onset of end-stage renal disease

Abstract

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.