IDEAS home Printed from https://ideas.repec.org/a/spr/patien/v11y2018i5d10.1007_s40271-018-0312-x.html
   My bibliography  Save this article

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

Author

Listed:
  • 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)

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.

Suggested Citation

  • Eileen Mack Thorley & Ravi G. Iyer & Paul Wicks & Chris Curran & Sanjay K. Gandhi & Victor Abler & Karen E. Anderson & Noelle E. Carlozzi, 2018. "Understanding How Chorea Affects Health-Related Quality of Life in Huntington Disease: An Online Survey of Patients and Caregivers in the United States," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 11(5), pages 547-559, October.
    • Handle: RePEc:spr:patien:v:11:y:2018:i:5:d:10.1007_s40271-018-0312-x
    DOI: 10.1007/s40271-018-0312-x
    as

    Download full text from publisher

    File URL: http://link.springer.com/10.1007/s40271-018-0312-x
    File Function: Abstract
    Download Restriction: Access to the full text of the articles in this series is restricted.
    File URL: https://libkey.io/10.1007/s40271-018-0312-x?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:spr:patien:v:11:y:2018:i:5:d:10.1007_s40271-018-0312-x. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    We have no bibliographic references for this item. You can help adding them by using this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: http://www.springer.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.