To consider the impact of juvenile Huntington disease (JHD) from a biomedical, symptom burden, and total pain palliative care perspective.
Methods:
This case report was informed by a narrative review of the literature with inclusion of expert opinion from pediatric palliative care, an adult and pediatric neurologist, and a child psychiatrist. Audio-recorded qualitative interview and coauthorship with the pediatric patient’s primary caregiver (his mother).
Results:
The JHD impacts all domains of child and family function.
Significance of Results:
Application of the concept of total pain to JHD informs and guides care for this complex, challenging condition.
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