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 journalArticle

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

Fingerprint

Developmental Disabilities
Renal Replacement Therapy
Decision Making
Checklist
Nephrology
Disabled Children
Psychological Stress
Comorbidity
Transplantation
Quality of Life
Demography
Organizations
Pediatrics
Delivery of Health Care
Equipment and Supplies
Survival
Surveys and Questionnaires

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

Cite this

Renal Replacement Therapy in children with severe developmental disability : guiding questions for decision-making. / Willem, Lore; Knops, Noël; Mekahli, Djalila; Cochat, Pierre; Edefonti, Alberto; Verrina, Enrico; Groothoff, Jaap; Lagae, Lieven; Pirenne, Jacques; Dobbels, Fabienne; Borry, Pascal; Van Geet, Chris; Levtchenko, Elena.

In: European Journal of Pediatrics, Vol. 177, No. 12, 12.2018, p. 1735-1743.

Research output: Contribution to journalArticle

Willem, L, Knops, N, Mekahli, D, Cochat, P, Edefonti, A, Verrina, E, Groothoff, J, Lagae, L, Pirenne, J, Dobbels, F, Borry, P, Van Geet, C & Levtchenko, E 2018, 'Renal Replacement Therapy in children with severe developmental disability: guiding questions for decision-making', European Journal of Pediatrics, vol. 177, no. 12, pp. 1735-1743. https://doi.org/10.1007/s00431-018-3238-3
Willem, Lore ; Knops, Noël ; Mekahli, Djalila ; Cochat, Pierre ; Edefonti, Alberto ; Verrina, Enrico ; Groothoff, Jaap ; Lagae, Lieven ; Pirenne, Jacques ; Dobbels, Fabienne ; Borry, Pascal ; Van Geet, Chris ; Levtchenko, Elena. / Renal Replacement Therapy in children with severe developmental disability : guiding questions for decision-making. In: European Journal of Pediatrics. 2018 ; Vol. 177, No. 12. pp. 1735-1743.
@article{841718e7206a43aa9f56170426805dd5,
title = "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.",
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",
author = "Lore Willem and No{\"e}l Knops and Djalila Mekahli and Pierre Cochat and Alberto Edefonti and Enrico Verrina and Jaap Groothoff and Lieven Lagae and Jacques Pirenne and Fabienne Dobbels and Pascal Borry and {Van Geet}, Chris and Elena Levtchenko",
year = "2018",
month = "12",
doi = "10.1007/s00431-018-3238-3",
language = "English",
volume = "177",
pages = "1735--1743",
journal = "European Journal of Pediatrics",
issn = "0340-6199",
publisher = "Springer Verlag",
number = "12",

}

TY - JOUR

T1 - Renal Replacement Therapy in children with severe developmental disability

T2 - guiding questions for decision-making

AU - Willem, Lore

AU - Knops, Noël

AU - Mekahli, Djalila

AU - Cochat, Pierre

AU - Edefonti, Alberto

AU - Verrina, Enrico

AU - Groothoff, Jaap

AU - Lagae, Lieven

AU - Pirenne, Jacques

AU - Dobbels, Fabienne

AU - Borry, Pascal

AU - Van Geet, Chris

AU - Levtchenko, Elena

PY - 2018/12

Y1 - 2018/12

N2 - 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.

AB - 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.

KW - Adult

KW - Checklist

KW - Child

KW - Child, Preschool

KW - Decision Making

KW - Developmental Disabilities/complications

KW - Female

KW - Humans

KW - Kidney Failure, Chronic/complications

KW - Male

KW - Middle Aged

KW - Nephrology/methods

KW - Practice Patterns, Physicians'

KW - Renal Replacement Therapy/methods

KW - Surveys and Questionnaires

KW - Young Adult

U2 - 10.1007/s00431-018-3238-3

DO - 10.1007/s00431-018-3238-3

M3 - Article

C2 - 30194525

VL - 177

SP - 1735

EP - 1743

JO - European Journal of Pediatrics

JF - European Journal of Pediatrics

SN - 0340-6199

IS - 12

ER -