Impact of Huntington's disease on quality of life

Mov Disord. 2001 Mar;16(2):325-30. doi: 10.1002/mds.1056.


The purpose of this study was to systematically assess the impact of Huntington's disease (HD) on patients' health-related quality of life (QOL). Seventy-seven patients with a clinically confirmed diagnosis of HD were interviewed by means of the Sickness Impact Profile (SIP). Additional data were gathered on patients' motor performance by means of the motor section of the Unified Huntington Disease Rating Scale (UHDRS), and cognitive performance by means of the Mini-Mental State (MMS). Patients had high scores on the SIP subscales, indicating moderate to severe functional impairment. Total Motor Score (TMS), MMS scores, and the duration of HD were significantly correlated with patients' scores on the SIP, and predicted a significant amount of variance of the Physical Dimension of the SIP, but not of the Psychosocial Dimension. We conclude that HD has a great impact on patients' physical and psychosocial well-being, the latter being more severely affected. Implications for further research and clinical practice are discussed.

MeSH terms

  • Adaptation, Psychological
  • Cognition Disorders / diagnosis
  • Cognition Disorders / epidemiology
  • Female
  • Humans
  • Huntington Disease / diagnosis
  • Huntington Disease / psychology*
  • Male
  • Middle Aged
  • Neuropsychological Tests
  • Quality of Life*
  • Self Concept
  • Sickness Impact Profile*
  • Social Adjustment