PD Haemo Transplant Palliative Arran Wheatley Georgina Oliver

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

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

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 • • •

Introduction • Challenges with renal replacement therapy for children with neurological conditions • Discussing

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

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

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

Patient History • • • Johnny, 5 year old Di-George syndrome – Neuro DD

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

Current Issues • • Mobilising issues Impact on family life Neurological changes – noisy,

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

Discussion • Should Johnny continue on PD despite numerous complications and risks? • Is

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?

Risks of repeated peritonitis and line breaches • Potentially life threatening • Damage to

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

Complications of long term PD Encapsulating peritoneal sclerosis - High morbidity with bowel obstruction

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

Haemodialysis Suitability • Behaviour - concerns regarding tolerance of length of treatment & confined

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

Transplantation Suitability • No suitable LRD • Previously on-call for 4 years with no

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

Palliative Options • Preparing family for options • Do you treat just because you

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

Conclusion • Assessing each patient case individually using a multi-disciplinary approach for the best

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

Any questions or similar experiences?

Any questions or similar experiences?

References • Aksu et al. (2012) Chronic Peritoneal Dialysis in Children with Special Needs

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/mcu 336/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

Thank you for listening!

Thank you for listening!