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

Lore Willem, 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

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)1735-1743
Number of pages9
JournalEuropean Journal of Pediatrics
Volume177
Issue number12
DOIs
Publication statusPublished - Dec 2018

Keywords

  • Adult
  • Checklist
  • Child
  • Child, Preschool
  • Decision Making
  • Developmental Disabilities/complications
  • Female
  • Humans
  • Kidney Failure, Chronic/complications
  • Male
  • Middle Aged
  • Nephrology/methods
  • Practice Patterns, Physicians'
  • Renal Replacement Therapy/methods
  • Surveys and Questionnaires
  • Young Adult

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