Understanding Domains That Influence Perceived Stigma in Individuals With Huntington Disease

Nicholas R. Boileau*, Jane S. Paulsen, Rebecca E. Ready, Elizabeth A. Hahn, Jin Shei Lai, Noelle E. Carlozzi

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

4 Scopus citations


Purpose/Objective: Persons with Huntington's disease experience stigma because of their gene status. Whereas perceived stigma has been found to impact quality of life, it is unknown how different health domains (i.e., physical, emotional, cognitive, and social) are associated with feelings of stigma. In addition, stigma research has been limited by the use of cross-sectional analyses. The current study seeks to explore which domains are associated with stigma in a longitudinal assessment of persons with Huntington's disease. Research Method/Design: The current analysis used data from the HDQLIFE study, which included 479 participants at baseline, 315 participants at 12 months, and 277 participants at 24 months. A multilevel model (time nested within person) was used to examine the effect of physical, emotional, cognitive, and social health on perceived stigma (Neuro-QoL Stigma) while controlling for demographic factors. Results: Findings indicate that physical, emotional, and cognitive health were associated with perceived stigma, whereas social health and demographic factors were not. Withinsubject, time-varying predictors accounted for 20.2% of the variance in stigma. Conclusions/ Implications: Our findings suggest that perceived stigma is influenced by physical, emotional, and cognitive health, which may be treated with physical therapy, emotional counseling, and cognitive rehabilitation. Application of these therapies may relieve the burden of perceived stigma; however, more research is needed in this area.

Original languageEnglish (US)
JournalRehabilitation Psychology
StateAccepted/In press - 2020


  • Health-related quality of life
  • Huntington's disease
  • Longitudinal
  • Stigma

ASJC Scopus subject areas

  • Psychiatry and Mental health
  • Clinical Psychology
  • Rehabilitation
  • Physical Therapy, Sports Therapy and Rehabilitation


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