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

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Abstract

Little is known about the impact of the course of life of children with end-stage renal disease (ESRD) on their quality of life in adulthood. We therefore assessed the course of life of adult patients with onset of ESRD at an age of <15 years between 1972 and 1992 and compared it with that of the general population. Furthermore, we explored how course of life is associated with quality of life (QoL) in young adulthood. A total of 75 young adult patients who had had ESRD since childhood, aged between 20 years and 30 years, completed the RAND-36 Health Survey and a questionnaire, which retrospectively assesses the achievement of development milestones. Patients achieved fewer milestones than peers with respect to autonomy, social, and psycho-sexual development, and displayed less risk behaviour. Patients who achieved fewer social milestones while growing up experienced more emotional problems and less vitality, and they had a lesser overall mental quality of life. Paediatric nephrologists should pay more attention to the development of social and independent functioning of children with ESRD in order to prepare them for active participation in society in adult life.

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Acknowledgements

Mariken Gruppen, Hannah Coutinho, Bella Drost, Janneke van den Broek and Anouk van der Graaf, all medical students, contributed to the data collection. Data collection was made possible by the co-operation of the following physicians: R.J. Hene, Medical Centre, University of Utrecht, J.J. Homan van der Heide, Academic Hospital, Groningen; M.R. Lilien, Wilhemina Children’s Hospital, Utrecht; N.J. van der Kar, St. Radboud Hospital, Nijmegen; M. Kooistra, Dianet, Utrecht; J.W. van der Pijl, Medical Centre, University of Leiden; E.J. Rischen-Vos, Dijkzigt Hospital, Rotterdam; S. Surachno, Academic Medical Centre, Amsterdam; E.D. Wolff, Sophia Children’s Hospital, Rotterdam; A.J. Apperloo, St. Elisabeth Hospital, Tilburg; M. Boekhout, Rijnland Hospital, Leiderdorp; J. Boonakker, Reinier de Graaf Gasthuis, Delft; M.H.L. Christiaans, Academic Hospital, Maastricht; P.P.N.M. Diderich, St. Fransiscus Gasthuis, Rotterdam; M.A. van Dorpel, St. Clara Hospital, Rotterdam; W.T. van Dorp, Kennemer Gasthuis, Haarlem; W.J. Fagel, Medical Centre, Leeuwarden; P.G. Gerlag, St. Joseph Hospital, Veldhoven; A. van Es, Dialysis Centre ‘t Gooi, Hilversum; A.B. Geers, St. Antonius Hospital, Nieuwegein; E.G. Hagen, Hospital De Lichtenberg, Amersfoort; S.J. Hoorntje, Catharina Hospital, Eindhoven; R.M. Huisman, Dialysis Centre, Groningen; K. Jie, Groene Hart Hospital, Gouda; G.M.T. de Jong, Drechsteden Hospital, Dordrecht; A.J. Hoitsma, St. Radboud Hospital, Nijmegen; G. Kolster, Isala Clinics, Zwolle; I. Keur, Dianet Buitenveldert, Amsterdam; W.A.H. Koning-Mulder, Medical Spectre Twente, Enschede; A.G. Lieverse, Diaconessenhuis, Eindhoven; P.B. Leurs, Oosterschelde Hospital, Goes; N. vd Lely, Reinier de Graaf Gasthuis, Delft; M.J. Nubé, Medical Center, Alkmaar; C. Oldenbroek, Westfries Gasthuis, Hoorn; M.J.M. Smit, Juliana Children’s Hospital, The Hague; G. Vastenburg, Scheper Hospital, Emmen; R.M. Valentijn, Red Cross Hospital, The Hague, A.E. v Wijk, Hospital Free University, Amsterdam. Financial support for the study was provided by the Dutch Kidney Foundation (Nierstichting Nederland).

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Authors and Affiliations

  1. Paediatric Psychosocial Department, Emma Children’s Hospital AMC, University of Amsterdam, P.O. Box 22700, 1100 DE, Amsterdam, The Netherlands

    Martha Alexandra Grootenhuis, Heleen Stam & Bob F. Last

  2. Department of Pediatric Nephrology, Emma Children’s Hospital AMC, Amsterdam, The Netherlands

    Jaap W. Groothoff

Authors
  1. Martha Alexandra Grootenhuis
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  2. Heleen Stam
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  3. Bob F. Last
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  4. Jaap W. Groothoff
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Correspondence to Martha Alexandra Grootenhuis.

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Grootenhuis, M.A., Stam, H., Last, B.F. et al. The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood. Pediatr Nephrol 21, 538–544 (2006). https://doi.org/10.1007/s00467-006-0030-9

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  • DOI: https://doi.org/10.1007/s00467-006-0030-9

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