Attending to Total Pain in Juvenile Huntington Disease: A Case Report Informed by Narrative Review of the Literature

OBJECTIVES: 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.