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PD, Haemo, Transplant, Palliative?

PD, Haemo, Transplant, Palliative?. Arran Wheatley Georgina Oliver. Our Unit . Nephro-urology unit Everything on same floor Transplants (LRD&DD): 15-20/year Haemodialysis: 15 patients Home Haemodialysis: 1 currently but 3 potential candidates in discussion. Joint care with GOSH

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PD, Haemo, Transplant, Palliative?

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  1. PD, Haemo, Transplant, Palliative? Arran Wheatley Georgina Oliver

  2. Our Unit • Nephro-urology unit • Everything on same floor • Transplants (LRD&DD): 15-20/year • Haemodialysis: 15 patients • Home Haemodialysis: 1 currently but 3 potential candidates in discussion. Joint care with GOSH • Peritoneal Dialysis: 6 patients • Palliative: None

  3. Introduction • Challenges with renal replacement therapy for children with neurological conditions • Discussing options for children who are on PD for longer than the recommended 5 years • Risk assessment of renal replacement therapy options • Benefits of continuing active treatment or palliative care

  4. Confidentiality • All the names have been changed in accordance with NMC code of conduct

  5. Patient History • Johnny, 5 year old • Di-George syndrome – Neuro DD • Cleft lip & palate – reliant on PEG feeding • Respiratory issues – home oxygen • Dysplastic kidneys & PUV = ESKD • PD for 5 years • LRTI → Cardiac arrest • MRI confirmed – hypoxic ischaemic injury • Lives with maternal grandparents

  6. Current Issues • Mobilising issues • Impact on family life • Neurological changes – noisy, dis-inhibited & choreo-athetoid movements • Further admissions for respiratory deterioration requiring PICU • Numerous PD line breaches & peritonitis • No appropriate LRD • Currently suspended from on-call due to respiratory compromise

  7. Discussion • Should Johnny continue on PD despite numerous complications and risks? • Is he suitable for haemodialysis with his behavioural and neurological state? • Should we think about transplantation even with respiratory problems? • Or should we consider palliative care?

  8. Risks of repeated peritonitis and line breaches • Potentially life threatening • Damage to peritoneum • Less effective dialysis • Repeated use of IPAB

  9. Complications of long term PD Encapsulating peritoneal sclerosis • High morbidity with bowel obstruction and malnutrition • Reported mortality is 50% within 12 months of diagnosis • Some nephrologists are suggesting a time limit to prevent EPS

  10. Haemodialysis Suitability • Behaviour - concerns regarding tolerance of length of treatment & confined to a chair/bed • Medical - Concerns regarding infections & safety related to a permcath line • Social & family impact of dialysis attendance • Further medical reasons

  11. Transplantation Suitability • No suitable LRD • Previously on-call for 4 years with no success • Education impact • Behaviour • Respiratory and neurological problems • Social concerns

  12. Palliative Options • Preparing family for options • Do you treat just because you can treat? • What’s in the best interests of the child?

  13. Conclusion • Assessing each patient case individually using a multi-disciplinary approach for the best interests of the child • Acknowledging that transplantation is not always the best option for every child • Preparing family for the different options discussed above – awareness of regular reviewing as situations of the child may change

  14. Any questions or similar experiences?

  15. References • Aksu et al. (2012) Chronic Peritoneal Dialysis in Children with Special Needs or Social Disadvantage or Both: Contraindications are not always Contraindications. Peritoneal Dialysis International. 32 (4) 424-430. • Brown et al. (2009) Length of time on peritoneal dialysis and encapsulating peritoneal sclerosis: position paper for ISPD. Peritoneal Dialysis International. Available at: www.pdiconnect.com. Accessed on: 15/12/2015 • Marks, C. (2010) Transplants for children with disabilities: Information for parents. New Brunswick, NJ: Elizabeth M. Boggs Center on Developmental Disabilities • Powers, CL et al. (2014) Organ Transplant Recipient Listing Criteria: A response to the BCH Task Force Request for Community Input on the Use of Psycho-Social Criteria, focusing on Children with Intellectual Developmental Disorders. Available at: http://bioethics.hms.harvard.edu/sites/g/files/mcu336/f/CEC-REPORT-Organ-Transplant-Listing-Criteria-February-2014.pdf. Accessed on: 15/12/2015 • Richards, CT, Crawley La Vera, M, Magnus, D (2009) Use of neurodevelopmental delay in paediatric solid organ transplant listing decisions: inconsistencies in standards across major paediatric transplant centres. Paediatric Transplantation, 13, p.843-850 • Wightman, A. (2014) Prevalence and outcomes of renal transplantation in children with intellectual disability. Pediatric Transplant. 18 (7) 714-719

  16. Thank you for listening!

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