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

Lore Willem¹, Noël Knops², Djalila Mekahli²

¹Department of Pediatric Nephrology and Organ Transplantation, University Hospitals Leuven, Herestraat 49, 3000, Leuven, Belgium. Lore.willem@uzleuven.be.

European Journal of Pediatrics

|September 9, 2018

Insights

Deciding on Renal Replacement Therapy (RRT) for children with severe developmental disability (DD) is complex. Professionals favor RRT initiation, considering parental wishes and quality of life, while noting contraindications like severe comorbidities.

Area of Science:

Pediatric Nephrology
Bioethics
Developmental Disabilities

Background:

Renal Replacement Therapy (RRT) for children with severe developmental disability (DD) is a contentious issue.
Prior research often centered on IQ as a sole decision-making factor for RRT.

Purpose of the Study:

To survey healthcare professionals' opinions on initiating or withholding RRT in children with severe DD.
To identify key medical and psychosocial factors influencing RRT decisions in this population.
To propose a decision-making checklist for RRT in pediatric DD cases.

Main Methods:

A web-based survey distributed to pediatric nephrology clinicians globally.
Collection of demographic data and opinions on RRT for specific cases and general pediatric DD populations.
Analysis of 286 professional responses regarding RRT initiation and contraindications.

Main Results:

Sixty-six percent of respondents supported initiating RRT for the case study child, with transplantation as the preferred method.
Key arguments for RRT initiation included parental preference, suffering reduction, and improved survival/quality of life.
Contraindications cited were low IQ, severe comorbidities, and inadequate care capacity.

Conclusions:

This study inventories healthcare professionals' views on RRT for children with DD.
It highlights critical medical and psychosocial factors for RRT decision-making.
A proposed checklist aims to guide RRT decisions in severe pediatric DD cases.

Read full analysis

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:

Decision-making Developmental disability Dialysis Transplantation

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