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Paeds Casesneurology-neurodisability-and-neuromuscular

Paeds Cases · neurology-neurodisability-and-neuromuscular

Transition and advance care planning in neurodisability: Case

Clinical case of a seventeen-year-old young woman with severe cerebral palsy approaching the paediatric to adult boundary with no transition plan, covering the distinction between transition and transfer, the Got Transition Six Core Elements with the age milestones of twelve fourteen eighteen and twenty-one, the assessment of transition readiness with the TRAQ or Ready Steady Go, the named transition coordinator and the portable summary, the dangerous transition gap, and the parallel paediatric advance care planning conversation for a child with a life-limiting neurodisability across the four domains of goals of care ceiling of treatment resuscitation decisions and preferred place of care.

paediatric neurodisability long case5 min readVerification in progress

Target exams

RACP DCEMRCPCH ClinicalRCPSC Pediatrics
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Target exams

RACP DCEMRCPCH ClinicalRCPSC Pediatrics
Prompt
A seventeen-year-old young woman with severe cerebral palsy, a gastrostomy, and nocturnal non-invasive ventilation is due to leave paediatric services within months. Her mother has always coordinated her care and answers every question on her behalf, the young woman has never met the adult team, and no transition plan has been documented. In the same clinic, the family of a child with progressive neurodegenerative disease is admitted for the third time this year with aspiration pneumonia and has never been asked what they would want if the breathing could not be supported.

Summary and immediate impression

This young woman presents the textbook picture of an unprepared and therefore dangerous transition. Her severe multisystem cerebral palsy, her dependence on gastrostomy and nocturnal ventilation, her mother's role as sole coordinator, and the complete absence of a documented plan place her at the highest risk of loss to follow-up, crisis admission, and deterioration at the boundary. The parallel child with neurodegenerative disease and recurrent aspiration presents the textbook case of a missing advance care plan, in which a family facing a deteriorating trajectory meets each crisis without a documented statement of their goals. The two failures are joined by a single thread, the absence of continuity built before the boundary and the crisis. [4][5]

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References8ShowHide
  1. [1]White PH, Cooley WC Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics, 2018.PMID 30348754
  2. [2]Fair C, Cuttance J, Sharma N, et al International and Interdisciplinary Identification of Health Care Transition Outcomes. JAMA Pediatr, 2016.PMID 26619178
  3. [3]Okumura MJ, Kuo DZ, Ware AN, et al Improving Health Care Transitions for Children and Youth With Special Health Care Needs. Acad Pediatr, 2022.PMID 35248248
  4. [4]Myers LL, Nerminathan A, Fitzgerald DA, et al Transition to adult care for young people with cerebral palsy. Paediatr Respir Rev, 2020.PMID 31987717
  5. [5]Dallimore DJ, Neukirchinger B, Noyes J Why is transition between child and adult services a dangerous time for young people with chronic kidney disease? A mixed-method systematic review. PLoS One, 2018.PMID 30071028
  6. [7]Brunetta J, Fahner J, Legemaat M, et al Age-Appropriate Advance Care Planning in Children Diagnosed with a Life-Limiting Condition: A Systematic Review. Children (Basel), 2022.PMID 35740767
  7. [8]Bennett HE, Duke S, Richardson A Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences. BMJ Support Palliat Care, 2023.PMID 37201934
  8. [11]Liben S, Papadatou D, Wolfe J Paediatric palliative care: challenges and emerging ideas. Lancet, 2008.PMID 17707080
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