Lore Willem1, Noël Knops2, Djalila Mekahli2, Pierre Cochat3, Alberto Edefonti4, Enrico Verrina5, Jaap Groothoff6, Lieven Lagae7, Jacques Pirenne8, Fabienne Dobbels9, Pascal Borry9, Chris Van Geet10, Elena Levtchenko2. 1. Department of Pediatric Nephrology and Organ Transplantation, University Hospitals Leuven, Herestraat 49, 3000, Leuven, Belgium. Lore.willem@uzleuven.be. 2. Department of Pediatric Nephrology and Organ Transplantation, University Hospitals Leuven, Herestraat 49, 3000, Leuven, Belgium. 3. Pediatric Nephrology, Rheumatology and Dermatology, Hospices Civils de Lyon, Université Claude-Bernard Lyon 1, Lyon, France. 4. Pediatric Nephrology and Dialysis Unit, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy. 5. Dialysis Unit, Istituto Giannina Gaslini, Genoa, Italy. 6. Department of Pediatric Nephrology, Emma Children's Hospital, Academic Medical Center, Amsterdam, The Netherlands. 7. Department of Development and Regeneration, section Paediatric Neurology, KU Leuven and University Hospitals Leuven, Leuven, Belgium. 8. Department of Abdominal Transplant Surgery, KU Leuven and University Hospitals Leuven, Leuven, Belgium. 9. Department of Public Health and Primary Care, KU Leuven, Leuven, Belgium. 10. Department of Cardiovascular Sciences, Center for Molecular and Vascular Biology, Department of Pediatrics, University Hospitals Leuven, Leuven, Belgium.
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.
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 DDpatients. 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.
Authors: E Benedetti; M Asolati; T Dunn; D A Walczak; P Papp; A M Bartholomew; Y Smith; A W Washington; R Pollak Journal: Am J Kidney Dis Date: 1998-03 Impact factor: 8.860
Authors: D S Kamin; D Freiberger; K P Daly; M Oliva; L Helfand; K Haynes; C H Harrison; H B Kim Journal: Am J Transplant Date: 2015-11-20 Impact factor: 8.086