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

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.

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Abbreviations

ESPN:

European Society of Pediatric Nephrology

ESKD:

End-stage kidney disease

EWOPA:

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

IPNA:

International Pediatric Nephrology Association

DD:

Developmental disability

RRT:

Renal Replacement Therapy

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Funding

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

Author information

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.

Correspondence to Lore Willem.

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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.

Additional information

Communicated by Mario Bianchetti

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Willem, L., Knops, N., Mekahli, D. et al. Renal Replacement Therapy in children with severe developmental disability: guiding questions for decision-making. Eur J Pediatr 177, 1735–1743 (2018). https://doi.org/10.1007/s00431-018-3238-3

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Keywords

  • Developmental disability
  • Dialysis
  • Transplantation
  • Decision-making