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.

Patterns of Growth after Kidney Transplantation among Children with ESRD

“…Consequently, relative leg length is increasingly used as a biomarker of childhood nutrition in epidemiologic studies (39)(40)(41). Short adult height is associated with major shortcomings in social and work life in patients with CKD, such as lower level of education, a lower level of employment, and a lower chance of being married (8,42). Therefore, the observed regression of disproportionate stunting after KTx in patients with CKD seems to be of major importance with respect to psychosocial rehabilitation in this patient group and may have further implications as well.…”

“…Even after successful kidney transplantation (KTx), catch-up growth occurs far from regularly (4,5) and is modified by age at transplantation, graft function, and steroid exposure (1)(2)(3)(4). Persistent growth failure not only hampers the psychosocial rehabilitation of patients with CKD but is strongly associated with excessive cardiovascular comorbidity (6)(7)(8). Uremia seems to have a nonuniform effect on growth of linear body segments.…”

Adult Height in Patients with Advanced CKD Requiring Renal Replacement Therapy during Childhood

“…Poor growth in children with ESRD is multifactorial and influenced by nutritional, metabolic, and hormonal alterations (1-3) and has been associated with an increased risk of hospitalization and death (4). Short stature has major consequences for quality of life and self-esteem; more than one third of young adults with childhood-onset ESRD report to be dissatisfied with their body height (5). Short adult height is associated with major shortcomings in social and work life such as a lower level of education, a lower level of employment and a lower chance of being married (6).…”

The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood

“…Important medical determinants of QoL were co-morbidity for all patients and disabilities for patients that had received a transplant [1]. Rosenkranz et al [2] found that general and health-related satisfaction with life of adult patients with ESRD was reduced compared to that of the general population.…”