Report Viewer

NINDS CDE Notice of Copyright
Huntington Quality of Life Instrument (H-QoL-I)
Availability
Please visit this website for more information about the instrument: Huntington Quality of Life Instrument
Classification
Supplemental: Huntington's Disease (HD)
Short Description of Instrument
The Huntington Quality of Life Instrument (H-QoL-I) is a self-reported specific Health-Related Quality of Life (HR-QoL) instrument developed to assess the quality of life of patients suffering from Huntington's disease.
 
The instrument includes 11 five-point Likert scale items, split into three dimensions: motor functioning (four items), psychology (four items), and socializing (three items). The five response items range from 'Not at all' to 'Extremely' or 'Very rarely' to 'Always'.
Comments/Special Instructions
The H-Qol-I was developed specifically to assess HDQoL in patients with HD. The large European study on HD burden (Euro-HDB) necessitated the need for a specific HRQoL (Clay et al., 2010).
Scoring and Psychometric Properties
Scoring: The score of each dimension is obtained by summing the item scores. The dimension scores are then normalized to a scale
ranging from 0 to 100, where 100 indicates the best possible
level of HRQoL and 0 indicated the worst. The H-QoL-I
index is calculated in the same manner as the individual
dimensions, however, the item scores are summed (Clay et al., 2012).
 
Psychometric Properties: The H-QoL-I showed an acceptable reliability (Cronbach's α>0.84). Factor analysis demonstrated satisfactory construct validity (Clay et al., 2012).
Rationale/Justification
Strengths:
  • The H-QoL-I is able to adequately capture HD-related variables that other generic instruments are not able to differentiate, especially the psychological dimension (Dorey at al., 2016).
  • The cross-cultural validity of the H-QoL-I is supported (Clay et al., 2014).
 
Weaknesses:
  • In cross-cultural quality of life instruments, specific populations such as persons with disabilities or chronic health conditions such as minorities have been neglected in international research (Schmidt, 2003).
  • There is a lack of longitudinal data in patients who have been assessed using the H-QoL-I (Dorey at al., 2016). 
References
Key Reference:
Clay E, De Nicola A, Dorey J, Squitieri F, Aballéa S, Martino T, Tedroff J, Zielonka D, Auquier P, Verny C, Toumi M. Validation of the first quality-of-life measurement for patients with Huntington's disease: the Huntington Quality of Life Instrument. Int Clin Psychopharmacol. 2012 Jul;27(4):208-14.
 
Additional References:
Clay E, Dorey J Tedroff J, et al F03 Huntington Quality Of Life Interview (HQOLI): a new huntington's disease-specific quality of life instrument. [Abstract] J Neurol Neurosurg Psych. 2010;81:A23.
 
Clay E, Belhadj A, Squitieri F, Dorey J, Auquier P, Zielonka D, Trigo P, Toumi M. Assessment Of The Huntington Quality Of Life Instrument (H-QOL-I) Cross-Cultural Validity. Value Health. 2014 Nov;17(7):A567.
 
Dorey J, Clay E, Khemiri A, Belhadj A, Cubillo PT, Toumi M. The quality of life of Spanish patients with Huntington's disease measured with H-QoL-I and EQ-5D. J Mark Access Health Policy. 2016 Oct 13;4.
 
Dorey J, Tedroff J, Squitieri F, De Nicola N, Urbinati D, Lamure M, Verny C, Toumi M. J21 European-huntington's disease burden study (EURO-HDB)-Preliminary results for Italy and France. Journal of Neurology, Neurosurgery & Psychiatry. 2010 Sep 1;81(Suppl 1):A45-6.
 
Schmidt S, Bullinger M. Current issues in cross-cultural quality of life instrument development. Arch Phys Med Rehabil. 2003 Apr;84(4 Suppl 2):S29-34.
 
Document last updated June 2024