Ayse Kuspinar, Ph.D
Nancy Mayo, Ph.D.; Anne-Louise Lafontaine, MD
The voice of people with Parkinson’s disease (PD) is of paramount importance in evaluating specific care and interventions. New therapies (rehabilitative or pharmaceutical) offer much potential health and quality of life benefits for people with PD. However, it is often difficult to decide which treatments should be approved and at what cost. The preference-based measure of health-related quality of life (HRQOL) can be used for this purpose. One problem with current HRQOL questionnaires that measure cost-effectiveness is that they are too general. They do not reflect the health concerns important to people with PD and are not developed with patient input. In addition, these measures fail to provide a mathematically fair summary value across multiple health domains, which is a problem when these measures are used as outcomes in clinical trials.
This project aims to develop a prototype preference-based HRQoL index for people with Parkinson’s disease.
This study will use the Quebec Parkinson Network (QPN) database to develop a prototype measure of the quality of life for people with PD. The QPN database includes clinical and epidemiological data such as the MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS), the Montreal Cognitive Assessment (MOCA), the Hoehn and Yahr Scale, and the Parkinson’s Disease Questionnaire-39 (PDQ-39), and the Timed-Up-and-Go (TUG).
Researcher in charge:
Julien Doyon, Ph.
Dr. Alain Dagher, MD;
Louis Collins, Ph.D
Dr. Edward Fon, MD;
Benjamin De Leener, Ph.D
Ovidiu Lungu, Ph.D
Ali Khatibi, Ph.D
This specific project aims to collect data that will help scientists understand the cause of Parkinson’s disease and develop better tests and treatments in the future.
This research study will take place at the Montreal Neurological Institute and Hospital, specifically the McConnell Brain Imaging Center.