Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States

Eileen Mack Thorley (), Ravi G. Iyer, Paul Wicks, Chris Curran, Sanjay K. Gandhi, Victor Abler, Karen E. Anderson and Noelle E. Carlozzi
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Eileen Mack Thorley: PatientsLikeMe
Ravi G. Iyer: Teva Pharmaceutical Industries
Paul Wicks: PatientsLikeMe
Chris Curran: PatientsLikeMe
Sanjay K. Gandhi: Teva Pharmaceutical Industries
Victor Abler: Teva Pharmaceutical Industries
Karen E. Anderson: Georgetown University
Noelle E. Carlozzi: University of Michigan

The Patient: Patient-Centered Outcomes Research, 2018, vol. 11, issue 5, No 9, 547-559

Abstract: Abstract Background Chorea is the hallmark motor feature of Huntington disease (HD) and can negatively impact daily functioning and health-related quality of life (HRQoL). Objective The objective of this study was to evaluate how chorea impacts HRQoL and overall functioning among HD patients participating on the PatientsLikeMe website ( www.PatientsLikeMe.com ). Methods A survey was provided to HD participants and/or their caregivers via PatientsLikeMe (9 February 2017–22 March 2017), comprising multiple-choice and open-ended questions designed to assess how chorea impacts HRQoL and overall functioning, and the importance of treating chorea. The HDQLIFE measurement system was used to evaluate patient-reported outcomes of chorea and compare Anxiety and Stigma scores in participants with high chorea versus those with low chorea [HDQLIFE Chorea scores ≥ 60 (n = 45) vs.

Date: 2018
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DOI: 10.1007/s40271-018-0312-x

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