Patient-reported outcomes in Huntington's disease: Quality of life in neurological disorders (Neuro-QoL) and Huntington's disease health-related quality of life (HDQLIFE) physical function measures

Mov Disord. 2017 Jul;32(7):1096-1102. doi: 10.1002/mds.27046. Epub 2017 May 27.


Background: There is a need for patient-reported outcome measures that capture the impact that motor impairments have on health-related quality of life in individuals with Huntington's disease.

Objectives: The objectives of this study were to establish the reliability and validity of new physical functioning patient-reported outcome measures in Huntington's disease.

Methods: A total of 510 individuals with Huntington's disease completed 2 Quality of Life in Neurological Disorders (Lower Extremity Function and Upper Extremity Function) and 3 Huntington's Disease Health-Related Quality of Life (Chorea, Speech Difficulties, and Swallowing Difficulties) measures. Clinician-rated and generic self-report measures were also administered.

Results: Reliabilities for the new patient reported physical functioning measures were excellent (all Cronbach's α > .92). Convergent, discriminant validity and known group validity was supported.

Conclusions: The results provide psychometric support for new patient-reported physical functioning measures and the fact that these measures can be used as clinically meaningful endpoints in Huntington's disease research and clinical practice. © 2017 International Parkinson and Movement Disorder Society.

Keywords: HDQLIFE; Huntington's disease; Neuro-QoL; chorea; health-related quality of life; motor symptoms; patient-reported outcome (PRO); physical functioning.

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Female
  • Humans
  • Huntington Disease / physiopathology*
  • Male
  • Middle Aged
  • Patient Reported Outcome Measures*
  • Psychometrics / instrumentation
  • Psychometrics / standards*
  • Quality of Life*
  • Reproducibility of Results
  • Severity of Illness Index*
  • Young Adult