European Journal of Pediatrics

, Volume 177, Issue 12, pp 1735–1743 | Cite as

Renal Replacement Therapy in children with severe developmental disability: guiding questions for decision-making

  • Lore WillemEmail author
  • Noël Knops
  • Djalila Mekahli
  • Pierre Cochat
  • Alberto Edefonti
  • Enrico Verrina
  • Jaap Groothoff
  • Lieven Lagae
  • Jacques Pirenne
  • Fabienne Dobbels
  • Pascal Borry
  • Chris Van Geet
  • Elena Levtchenko
Original Article


Whether to initiate or to withhold Renal Replacement Therapy (RRT) in children with severe developmental disability (DD) remains a topic of intense debate. The present study investigated the opinion of professionals on this difficult issue and proposed a checklist with guiding questions for decision-making. Clinicians affiliated to different organizations involved in pediatric nephrology worldwide were invited to respond to a web-based survey. This survey focused on the collection of demographic data of the respondents together with their opinion concerning the decision-making regarding RRT in a particular case and for children with severe DD in general. A total of 286 professionals responded to the survey. Sixty-six percent supported initiating RRT in the child of the case report, with pre-emptive transplantation being the preferred modality. Important arguments pro RRT initiation in children with severe DD in general were parental preference, decrease of suffering, and improvement of survival and quality of life. Important contraindications included low IQ, severe comorbidities, and inability of the patient to take medication or for the family to provide sufficient care.

Conclusion: The present study presents an inventory on the opinions of health care professionals involved in RRT in children regarding the treatment of children with DD and assists in the decision-making process by identifying important medical and psychosocial arguments for initiating or withholding RRT in severe DD patients.

What is Known:

Renal Replacement Therapy (RRT) in children with severe developmental disability (DD) is a topic of intense debate.

Previous studies on the opinion of professionals mainly focused on the use of IQ as an argument in the decision-making whether or not starting RRT.

What is New:

The present study investigated the opinion of professionals with regard to considering initiation or withholding RRT in children with severe DD and identified medical and psychosocial arguments playing a role in the decision-making process.

Based on these arguments, a checklist with guiding questions for decision-making is proposed.


Developmental disability Dialysis Transplantation Decision-making 



European Society of Pediatric Nephrology


End-stage kidney disease


European Working Group on Psychosocial Aspects of Patients with Chronic Kidney Disease


International Pediatric Nephrology Association


Developmental disability


Renal Replacement Therapy


Authors’ contributions

Lore Willem and Elena Levtchenko participated in research design, data collection, data analyses, writing, and approval of the manuscript; Noël Knops, Fabienne Dobbels, and Pascal Borry participated in research design, data analyses, writing, and approval of the manuscript; Djalila Mekahli, Pierre Cochat, Alberto Edefonti, Enrico Verrina, Jaap Groothoff, Lieven Lagae, Jacques Pirenne, and Chris Van Geet participated in research design, writing, and approval of the manuscript.


The study was supported by Grant 1801110N from the Fund of Scientific Research-Flanders to Elena Levtchenko.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Informed consent

Informed consent to conduct the survey and publish the findings was obtained from the parents of the patient presented in the survey.


  1. 1.
    Aksu N, Yavascan O, Anil M, Kara OD, Bal A, Anil AB (2012) Chronic peritoneal dialysis in children with special needs or social disadvantage or both: contraindications are not always contraindications. Perit Dial Int 32(4):424–430CrossRefGoogle Scholar
  2. 2.
    Benedetti E, Asolati M, Dunn T, Walczak DA, Papp P, Bartholomew AM, Smith Y, Washington AW, Pollak R (1998) Kidney transplantation in recipients with mental retardation: clinical results in a single-center experience. Am J Kidney Dis 31(3):509–512CrossRefGoogle Scholar
  3. 3.
    Chen A, Farney A, Russell GB, Nicolotti L, Stratta R, Rogers J, Lin JJ (2017) Severe intellectual disability is not a contraindication to kidney transplantation in children. Pediatr Transplant 21(3) CrossRefGoogle Scholar
  4. 4.
    Cook J, Dickinson H, Eccles M (2009) Response rates in postal surveys of healthcare professionals between 1996 and 2005: an observational study. BMC Health Serv Res 9:160CrossRefGoogle Scholar
  5. 5.
    Dionne JM, d’Agincourt-Canning L (2015) Sustaining life or prolonging dying? Appropriate choice of conservative care for children in end-stage renal disease: an ethical framework. Pediatr Nephrol 30(10):1761–1769CrossRefGoogle Scholar
  6. 6.
    Dobbels F (2014) Intellectual disability in pediatric transplantation: pitfalls and opportunities. Pediatr Transplant 18(7):658–660CrossRefGoogle Scholar
  7. 7.
    Galante NZ, Dib GA, Medina-Pestana JO (2010) Severe intellectual disability does not preclude renal transplantation. Nephrol Dial Transplant 25(8):2753–2757CrossRefGoogle Scholar
  8. 8.
    Gerson AC, Butler R, Moxey-Mims M, Wentz A, Shinnar S, Lande MB, Mendley SR, Warady BA, Furth SL, Hooper SR (2006) Neurocognitive outcomes in children with chronic kidney disease: current findings and contemporary endeavors. Ment Retard Dev Disabil Res Rev 12(3):208–215CrossRefGoogle Scholar
  9. 9.
    Goldberg AM, Amaral S, Moudgil A (2015) Developing a framework for evaluating kidney transplantation candidacy in children with multiple comorbidities. Pediatr Nephrol 30(1):5–13CrossRefGoogle Scholar
  10. 10.
    Kamin DS, Freiberger D, Daly KP, Oliva M, Helfand L, Haynes K, Harrison CH, Kim HB (2016) What is the role of developmental disability in patient selection for pediatric solid organ transplantation? Am J Transplant 16(3):767–772CrossRefGoogle Scholar
  11. 11.
    Kasiske BL, Ramos EL, Gaston RS, Bia MJ, Danovitch GM, Bowen PA, Lundin PA, Murphy KJ (1995) The evaluation of renal transplant candidates: clinical practice guidelines. Patient Care and Education Committee of the American Society of Transplant Physicians. J Am Soc Nephrol 6(1):1–34PubMedGoogle Scholar
  12. 12.
    Levenson JL, Olbrisch ME (1993) Psychosocial evaluation of organ transplant candidates: a comparative survey of process, criteria, and outcomes in heart, liver, and kidney transplantation. Psychosomatics 34(4):314–323CrossRefGoogle Scholar
  13. 13.
    Martens MA, Jones L, Reiss S (2006) Organ transplantation, organ donation and mental retardation. Pediatr Transplant 10(6):658–664CrossRefGoogle Scholar
  14. 14.
    Maulik PK, Mascarenhas MN, Mathers CD, Dua T, Saxena S (2011) Prevalence of intellectual disability: a meta-analysis of population-based studies. Res Dev Disabil 32(2):419–436CrossRefGoogle Scholar
  15. 15.
    McKenzie JK, Moss AH, Feest TG, Stocking CB, Siegler M (1998) Dialysis decision making in Canada, the United Kingdom, and the United States. Am J Kidney Dis 1:12–8.25CrossRefGoogle Scholar
  16. 16.
    Ohta T, Motoyama O, Takahashi K, Hattori M, Shishido S, Wada N, Gotoh Y, Yanagihara T, Hasegawa A, Sakano T (2006) Kidney transplantation in pediatric recipients with mental retardation: clinical results of a multicenter experience in Japan. Am J Kidney Dis 47(3):518–527CrossRefGoogle Scholar
  17. 17.
    Richards CT, Crawley LM, Magnus D (2009) Use of neurodevelopmental delay in pediatric solid organ transplant listing decisions: inconsistencies in standards across major pediatric transplant centers. Pediatr Transplant 13(7):843–850CrossRefGoogle Scholar
  18. 18.
    Samelson-Jones E, Mancini DM, Shapiro PA (2012) Cardiac transplantation in adult patients with mental retardation: do outcomes support consensus guidelines? Psychosomatics 53(2):133–138CrossRefGoogle Scholar
  19. 19.
    Surman OS, Purtilo R (1992) Reevaluation of organ transplantation criteria: allocation of scarce resources to borderline candidates. Psychosomatics 33(2):202–212CrossRefGoogle Scholar
  20. 20.
    Townsend-White C, Pham ANT, Vassos MV (2012) Review: a systematic review of quality of life measures for people with intellectual disabilities and challenging behaviours. J Intellect Disabil Res 56(3):270–284CrossRefGoogle Scholar
  21. 21.
    Wightman AG (2016) Is it permissible for a child with neurodevelopmental disabilities to be a living donor transplant candidate, but not a deceased donor candidate? Should donor source influence transplant center deliberations? Pediatr Transplant 21:e12850CrossRefGoogle Scholar
  22. 22.
    Wightman A, Young B, Bradford M, Dick A, Healey P, McDonald R, Smith J (2014) Prevalence and outcomes of renal transplantation in children with intellectual disability. Pediatr Transplant 18(7):714–719CrossRefGoogle Scholar
  23. 23.
    Wightman A, Goldberg A, Diekema D (2018) Fairness, severe intellectual disability, and the special case of transplantation. Pediatr Transplant 22:e13228CrossRefGoogle Scholar
  24. 24.
    Wightman A., Smith J., Diekema D.S. (2016) Neurodevelopmental Status as a Criterion for Solid Organ Transplant Eligibility. In: Greenberg R., Goldberg A., Rodríguez-Arias D. (eds) Ethical Issues in Pediatric Organ Transplantation. International Library of Ethics, Law, and the New Medicine, vol 66. Springer, ChamGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  • Lore Willem
    • 1
    Email author
  • Noël Knops
    • 1
  • Djalila Mekahli
    • 1
  • Pierre Cochat
    • 2
  • Alberto Edefonti
    • 3
  • Enrico Verrina
    • 4
  • Jaap Groothoff
    • 5
  • Lieven Lagae
    • 6
  • Jacques Pirenne
    • 7
  • Fabienne Dobbels
    • 8
  • Pascal Borry
    • 8
  • Chris Van Geet
    • 9
  • Elena Levtchenko
    • 1
  1. 1.Department of Pediatric Nephrology and Organ TransplantationUniversity Hospitals LeuvenLeuvenBelgium
  2. 2.Pediatric Nephrology, Rheumatology and Dermatology, Hospices Civils de LyonUniversité Claude-Bernard Lyon 1LyonFrance
  3. 3.Pediatric Nephrology and Dialysis UnitFondazione IRCCS Ca’ Granda, Ospedale Maggiore PoliclinicoMilanItaly
  4. 4.Dialysis UnitIstituto Giannina GasliniGenoaItaly
  5. 5.Department of Pediatric NephrologyEmma Children’s Hospital, Academic Medical CenterAmsterdamThe Netherlands
  6. 6.Department of Development and Regeneration, section Paediatric NeurologyKU Leuven and University Hospitals LeuvenLeuvenBelgium
  7. 7.Department of Abdominal Transplant SurgeryKU Leuven and University Hospitals LeuvenLeuvenBelgium
  8. 8.Department of Public Health and Primary CareKU LeuvenLeuvenBelgium
  9. 9.Department of Cardiovascular Sciences, Center for Molecular and Vascular Biology, Department of PediatricsUniversity Hospitals LeuvenLeuvenBelgium

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