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Validation of the first quality-of-life measurement for patients with Huntingtons disease: the Huntington Quality of Life Instrument

Clay, Emilied; De Nicola, Annunziataa; Dorey, Juliee; Squitieri, Ferdinandoa; Aballéa, Samuele; Martino, Tizianaa; Tedroff, Joakimb; Zielonka, Danielc; Auquier, Pascald; Verny, Christophef; Toumi, Mondherg

International Clinical Psychopharmacology: July 2012 - Volume 27 - Issue 4 - p 208–214
doi: 10.1097/YIC.0b013e3283534fa9
Original Articles

Health-related quality-of-life instruments are critical for assessing disease burdens. Generic tools allow comparison between diseases but do not discriminate between disease severities. Specific tools also tend to be more sensitive. No specific tool is available to assess quality of life in patients with Huntington’s disease (HD). In the context of the European study on HD burden, a specific tool was created: the Huntington Quality of Life Instrument (H-QoL-I). The aim of this study was to optimize the content and validate the H-QoL-I. After a semistructured interview with patients, caregivers and HD specialists, we conducted a patient focus group. A self-reported questionnaire was then developed in French and Italian. A total of 252 patients were recruited to answer the questionnaire. Face, internal and external validities were examined using a variety of methods. The shortened H-QoL-I that resulted from the successive analyses comprises 11 items, which are divided into three dimensions: motor functioning (four items), psychology (four items) and socializing (three items). These three domains were identified as being essential to cover the full domain of the quality of life for patients affected by HD. The H-QoL-I showed an acceptable reliability (Cronbach’s α>0.84). Factor analyses demonstrated satisfactory construct validity. Moreover, the item internal consistency and item discriminant validity criteria were fulfilled. No differential item functioning was detected. External validity supported the scale’s robustness. These data support the validity of the H-QoL-I in patients with HD.

aIRCCS Neuromed, Neurogenetics and Rare Diseases Centre, Pozzilli, Italy

bNeuroSearch, Gothenburg, Sweden

cDepartment of Social Medicine, Poznan University of Medical Sciences, Poznan, Poland

dUniversity of the Mediterranean, Marseille

eCreativ-Ceutical, HEOR, Paris

fCHU, Neurology Unit, Angers

gUniversity Claude Bernard Lyon I, Lyon, France

Correspondence to Mondher Toumi, PhD, University Claude Bernard Lyon I, 11, rue Guillaume Paradin, 69372 Lyon, Cedex 08, France Tel: +33 686 663 550; fax: +33 153 754 924; e-mail: mondher.toumi@univ-lyon1.fr

Received January 12, 2012

Accepted March 5, 2012

© 2012 Lippincott Williams & Wilkins, Inc.