Publication date: Apr 05, 2019
To consider the impact of juvenile Huntington disease (JHD) from a biomedical, symptom burden, and total pain palliative care perspective.
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).
The JHD impacts all domains of child and family function.
Application of the concept of total pain to JHD informs and guides care for this complex, challenging condition.
Kendrick, L.M., Hudgell, D., Hellman, A., and Weaver. Attending to Total Pain in Juvenile Huntington Disease: A Case Report Informed by Narrative Review of the Literature. 06437. 2019 J Palliat Care.
|disease||MESH||Juvenile Huntington Disease|
- The prevalence and the burden of pain in patients with Huntington disease: a systematic review and meta-analysis.
- Assessment of the Performance of a Modified Motor Scale as Applied to Juvenile Onset Huntington’s Disease.