Contemporary health care for Huntington disease

Abstract

Providing medical care for people and families affected by Huntington disease (HD) can be a rewarding effort when realistic goals of improved quality of life and optimized functional status are set. Multiple disease symptoms can remit or improve with currently available pharmacologic and behavioral interventions, even though barriers exist that interfere with access to treatment. Connecting expert multidisciplinary teams with community-based care, developing treatment guidelines, and involving the HD family community in quality improvements can achieve an integrated system of health care delivery. Engaging people with HD in high-quality compassionate care will not only improve lives, it will also encourage participation in clinical trials that search for disease-modifying treatments that will reduce or bring the suffering of HD to an end.

Keywords: Huntington disease; care coordination; care delivery; caregiver burden; multidisciplinary care; quality improvement; standards of care.