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.
Similar content being viewed by others
References
Shroff R, Wright E, Ledermann S, Hutchinson C, Rees L (2003) Chronic hemodialysis in infants and children under 2 years of age. Pediatr Nephrol 18:378–383
Haas S, Schmitt CP, Arbeiter K, Bonzel KE, Fischbach M, John U, Pieper AK, Schaub TP Passlick-Deetjen J, Mehls O, Schaefer F (2003) Improved acidosis correction an recovery of mesothelial cell mass with neutral-pH bicarbonate dialysis solution among children undergoing automated peritoneal dialysis. J Am Soc Nephrol 14:2632–2638
Benfeld MR (2003) Current status of kidney transplant: update 2003. Pediatr Clin North Am 50:1301–1334
Groothoff JW, Gruppen MP, Offringa M, Hutten J, Lilien MR, van de Kar NJ, Wolff ED, Davin, JC, Heymans HS (2002) Mortality and causes of death of end-stage renal disease in children: a Dutch cohort study. Kidney Int 61:621–629
Reichwald-Klugger E, Rosenkranz J (2004) Psychological care and adherence to medical regimens. In: Warady BA, Schaefer FS, Fine RN, Alexander SR (eds) Pediatric dialysis. Kluver, Secaucus, NJ, pp 457–470
Nevacheck PW, Taylor WR (1992) Childhood chronic illness: prevalence, severity, and impact. Am J Pub Health 82:364–371
Gortmaker SL, Weitzman M, Sobol AM (1990) Chronic conditions, socioeconomic risks, and behavioral problems in children and adolescents. Paediatrics 85:267–276
Wolff, G, Ehrich JHH (1993) Psychosocial impact of transplantation in children. In: Broyer M (ed) Transplantation. Tindall-Baillère, London, pp 1087–1100
Rosenkranz J, Bonzel KE, Bulla M, Michalk D, Offner G, Reichwald-Klugger E, Schärer K (1992) Psychosocial adaptation of children and adolescents with chronic renal failure. Pediatr Nephrol 6:459–463
Groothoff JW, Lilien MR, van de Kar NC, Wolff ED, Davon JC (2005) Cardiovascular disease as a late complication of end-stage renal disease in children. Pediatr Nephrol 20:374–379
Oh J, Wunsch R, Turzer M, Bahner M, Raggi P, Querfeld U, Mehls O, Schaefer F (2002) Advanced coronary and carotid arteriopathy in young adults with childhood-onset chronic renal failure. Circulation 106:100–105
Henrich G, Herschbach P (1996) Questions on life satisfaction (FLZ)—a short questionnaire for assessing subjective quality of life. Eur J Psychol Assess 16:150–159
Hunt SM, McKenna SP, McEwen J, Williams J, Papp E (1981) The Nottingham Health Profile: subjective health status and medical consultations. Soc Sci Med 15:221–229
Franke GH (2004) Lebensqualitätsmessung am Beispiel der Nierentransplantation—state of the art. Tx Med 16:142–147
Apolone G, Mosconi P (1998) Review of the concept of quality of life assessment and discussion of the present trend in clinical research. Nephrol Dial Transplant [Suppl] 13: 865–869
Offner G, Latta K, Hoyer PF, Baum HJ, Ehrich JHH, Pichlmayr R, Brodehl J (1999) Kidney transplanted children come of age. Kidney Int 55:1509–1517
Ruder H (1996) Nierentransplantationen im Kindes- und Jugendalter. Monatsschr Kinderheilkd 144:951–964
Gamperli A, Leumann E, Neuhaus TJ, Schlumpf R, Largiader F (1996) Twenty-five years of pediatric dialysis and transplantation in Zurich. Schweiz Med Wochenschr 126:77–85
Broyer M, Le Bihan C, Charbit M, Guest G, Tete MJ, Gagnadoux MF, Niaudet P (2004) Long-term social outcome of children after kidney transplantation. Transplantation 77:1033–1037
Groothoff JW, Grootenhuis M, Offringa M, Stronks K, Hutten GJ, Heymans HSA (2005) Social consequences in adult life of end-stage renal disease of childhood. Pediatrics 114:in print
Groothoff JW, Grootenhuis MA, Offringa M, Gruppen MP, Korevaar JC, Heymans HS (2003) Quality of life in adults with end-stage renal disease since childhood is only partially impaired. Nephrol Dial Transplant 18:310–317
Statistisches Bundesamt (2002) Bevölkerung im April 2001 nach Beteiligung am Erwerbsleben und überwiegenden Lebensunterhalt und Altersgruppen. In: Statistisches Bundesamt (ed) Statistisches Jahrbuch 2002 für die Bundesrepublik Deutschland, Metzler & Poeschl, Stuttgart, p 102
Statistisches Bundesamt (1995) Bevölkerung im April 1994 nach Beteiligung am Erwerbsleben, Familienstand, überwiegenden Lebensunterhalt und Altersgruppen. In: Statistisches Bundesamt (ed) Statistisches Jahrbuch 1995 für die Bundesrepublik Deutschland, Metzler & Poeschl, Stuttgart, p 39
Groothoff JW, Grootenhuis M, Dommerholt A, Gruppen MP, Offringa M, Heymans HSA (2002) Impaired cognition and schooling in adults with end stage renal disease since childhood. Arch Dis Child 87:380–385
Fennell RS, Fennell EB, Carter RL, Mings EL, Klausner AB, Hurst JR (1990) A longitudinal study of the cognitive function of children with renal failure. Pediatr Nephrol 4:11–15
Fielding D, Brownbridge G (1999) Factors related to psychosocial adjustment in children with end-stage renal failure. Pediatr Nephrol 13:766–770
Schröder, C, Hulstijn-Dirkmaat GM (2004) Neurological side effects of dialysis and cognitive development in children with end-stage renal disease. In: Warady BA, Schaefer FS, Fine RN, Alexander SR (eds) Pediatric dialysis. Kluver, Secaucus, NJ, pp 443–456
Brawden HN, Acott P, Carter J, Lirenman D, MacDonald GW, McAllister M, McDonnell MC, Shea S, Crocker J (2004) Neuropsychological functioning in end-stage renal disease. Arch Dis Child 89:644–647
Rosenkranz J, Reichwald-Klugger E (2000) Psychosoziale Rehabilitation chronisch nierenkranker Kinder und Jugendlicher in Deutschland—eine Verlaufsstudie. Monatsschr Kinderheilkd 148:202–203
Rizzoni G, Ehrich JHH, Broyer M, Brunner FP, Brynger H, Fassbinder W, Geerling W, Selwood NH, Tufveson G, Wing AJ (1992) Rehabilitation of young adults during renal replacement therapy in Europe. 1. The presence of disabilities. Nephrol Dial Transplant 7:573–578
Ehrich JHH, Rizzoni G, Broyer M, Brunner FP, Brynger H, Fassbinder W, Geerlings W, Selwood NH, Tufveson G, Wing AJ (1992) Rehabilitation of young adults during renal replacement therapy in Europe. 2. Schooling, employment and social situation. Nephrol Dial Transplant 7:579–586
Curtin RB, Oberley ET, Sacksteder P, Friedman A (1996) Differences between employed and nonemployed dialysis patients. Am J Kidney Dis 27:533–540
Blake C, Codd MB, Cassidy A, O’Meara YM (2000) Physical function, employment and quality of life in end-stage renal disease. J Nephrol 13:142–149
van de Mheen H, Stronks K, Schrijvers JP, Mackenbach JP (1999) The influence of adult ill health on occupational class mobility and mobility out of and into employment in The Netherlands. Soc Sci Med 439:509–518
Cameron JS (1985) The continued care of pediatric patients with renal disease into adult life. Am J Kidney Dis 2:91–95
Postlethwaite R J, Garralda ME, Reynolds J M, Morton M (1991) Psychosocial adjustment to end-stage renal failure. Ped Nephrol 5:612–616
Bendit R, Gaiser W, Marbach J (1999) Youth and housing in Germany and the European union. Leske and Budrich, Opladen
Bendit R, Hein K (2003) Jugendliche in Europa auf dem Weg in die Selbstständigkeit. DJI Bulletin 63:4–7
Sandberg DE, MacGillivray MH (2002) Growth hormone therapy in childhood-onset growth hormone deficiency: adult anthropometric and psychological outcomes. Endocrine 12:173–182
Lagrou K, Xhrouet-Heinrichs D, Massa G, Vandeweghe M, Bourguignon JP, de Schepper J, de Zegher F, Ernould C, Heinrichs C, Malvaux P, Craen M (2001) Quality of life and retrospective perception of the effect of growth hormone treatment in adult patients with childhood growth hormone deficiency. J Pediatr Endocrinol Metab 14 [Suppl 5]:1249–1260
Eiholzer U, Haverkamp F, Voss L (eds) (1999) Growth, stature, and psychosocial well-being. Hogrefe & Huber, Seattle, Toronto
Haffner D, Schaefer F, Nissel R, Wühl E, Tönshoff B, Mehls O (2000) Effect of growth hormone treatment on the adult height of children with chronic renal failure. German Study Group for Growth Hormone Treatment in Chronic Renal Failure. N Engl J Med 343:923–930
Tönshoff B, Mehls O (1995) Growth retardation in children with chronic renal insufficiency; current aspects of pathophysiology and treatment. J Nephrol 8:133–142
Fine RN, Sullivan EK, Tejani A (2000) The impact of recombinant human growth treatment on final adult height. Pediatr Nephrol 14:679–681
Voss LD, Sandberg DE (2004) The psychological burden of short stature: evidence against. Eur J Endocrinol 151 [Suppl 1]:29–33
Noeker M, Havekamp F (1999) Can the clinical and empirical evidence regarding adjustment to small stature be recondiled? In: Eiholzer U, Haverkamp F, Voss L (eds) Growth, stature, and psychosocial well-being. Hogrefe & Huber, Seattle, Toronto, pp 107–119
Statistisches Bundesamt (ed) (2004) Leben und Arbeiten in Deutschland. Ergebnisse des Mikrozensus 2003. Statistisches Bundesamt, Wiesbaden
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Rosenkranz, J., Reichwald-Klugger, E., Oh, J. et al. Psychosocial rehabilitation and satisfaction with life in adults with childhood-onset of end-stage renal disease. Pediatr Nephrol 20, 1288–1294 (2005). https://doi.org/10.1007/s00467-005-1952-3
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00467-005-1952-3