Transition and advance care planning in neurodisability

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Target exams

Red flags

• A young person with neurodisability transferred to adult care with no transition plan and no readiness assessment is at high risk of loss to follow-up unplanned admission and clinical deterioration
• Confusing transition which is a planned process over years with transfer which is a single administrative event is the commonest reason the transition fails
• An advance care plan written once and never reviewed goes stale as the disease trajectory and the family's wishes shift and may then mislead a crisis team
• An acute deterioration in a child with severe neurodisability and no documented goals of care risks an unwanted escalation to intensive care that the family never wanted
• Paediatric palliative care is not reserved for the dying; it should run alongside active disease-modifying treatment from the diagnosis of any life-limiting condition
• A family that has never been offered an advance care conversation is forced to learn what one is during a crisis which is the worst time to make a decision

Life stages

Care settings

Clinical exam formats

Board mappings

• Defines transition as a purposeful planned process of moving a young person from child-centred to adult-centred care over years, distinct from transfer which is a single event, and names the Got Transition Six Core Elements as its backbone
• States that the transition process should begin no later than around twelve years of age, with a written transition plan by fourteen, readiness for transfer by eighteen, and the transfer to adult care completed between eighteen and twenty-one years
• Defines paediatric advance care planning as a voluntary ongoing family-centred conversation about future goals of care ceiling of treatment and resuscitation preferences for a child with a life-limiting condition
• Explains why the transition boundary is a dangerous time, citing loss to follow-up unplanned admissions disease recurrence and the deterioration seen in young people with neurodisability moved across without a plan
• Selects and uses a validated transition readiness tool such as the TRAQ or Ready Steady Go and assigns a named transition coordinator to each young person moving to adult services
• Initiates and revisits an age-appropriate advance care plan across the domains of goals of care symptom control and preferred place of care, integrating it with disease-modifying treatment rather than opposing it
• Transition versus transfer, the Six Core Elements, and the age milestones of twelve fourteen eighteen and twenty-one that structure the transition timeline
• The dangerous transition gap and the harms of loss to follow-up and deterioration in young people with neurodisability transferred without a plan
• Paediatric advance care planning as an ongoing family-centred process covering goals of care ceiling of treatment and resuscitation decisions, distinct from a do-not-resuscitate order or end-of-life care alone
• Assesses transition readiness in a young person with cerebral palsy or muscular dystrophy and builds a documented transition plan with a named coordinator and a readiness tool
• Leads an advance care planning conversation with the family of a child with severe neurodisability and documents a shared goals-of-care plan that travels with the child
• Communicates honestly and hopefully with a young person and family at the transition boundary and at the time of an advance care conversation, preserving trust and autonomy
• Level 1: Recognises that transition is a planned developmental process over years, not a single transfer, and that advance care planning is an ongoing conversation not a one-off form
• Level 2: Applies a transition readiness tool and a named coordinator, and initiates an age-appropriate advance care plan for a child with a life-limiting neurodisability
• Level 3: Coordinates the full transition to adult services and integrates palliative and advance care planning with disease-modifying treatment across the whole disease trajectory
• The Six Core Elements of health care transition and the age milestones of twelve fourteen eighteen and twenty-one years that structure transition planning
• The harms of a poorly managed transition including loss to follow-up and clinical deterioration in young people with chronic neurodisability
• Paediatric advance care planning and the four domains of goals of care ceiling of treatment resuscitation decisions and preferred place of care, and the principle that palliative care runs alongside active treatment
• Structured assessment of a young person approaching transition using a readiness tool and a documented transition plan with a named coordinator
• Conduct of a sensitive advance care planning conversation with a family and documentation of a shared goals-of-care plan
• Communication of prognosis transition and goals of care to a young person and family with honesty and a preserved therapeutic relationship
• The Got Transition framework and its Six Core Elements as the standard for health care transition of youth with special health care needs in the medical home, beginning by age twelve
• Advance care planning for children with medical complexity and life-limiting neurodisability as an ongoing family-centred process integrated with curative and life-prolonging treatment
• The transition outcomes that define success, including continuity of care self-management and engagement with adult services
• Recognition of transition as a planned longitudinal process with a readiness assessment and a named coordinator, and of the harms of a poorly managed transfer
• Initiation of an age-appropriate advance care plan with the domains of goals of care ceiling of treatment resuscitation decisions and preferred place of care
• Family-centred communication and shared decision-making across the transition and across the trajectory of a life-limiting neurodisability
• The Canadian framework for transition of young people with chronic conditions and neurodisability, with readiness assessment and a transition coordinator
• Paediatric advance care planning as an ongoing conversation integrated with active treatment for children with life-limiting neurodisability
• Coordination of lifelong care across the paediatric to adult boundary and equity of access to transition and palliative services