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

Attending to Total Pain in Juvenile Huntington Disease: A Case Report Informed by Narrative Review of the Literature. J Palliat Care. 2019 Apr 05;:825859719835560 Authors: Kendrick LM, Hudgell D, Hellman A, Weaver MS Abstract 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. PMID: 30950323 [PubMed - as supplied by publisher]
Source: Journal of Palliative Care - Category: Palliative Care Tags: J Palliat Care Source Type: research