Objective: To systematically review and assess the use and value of preference-based quality of life (QoL) measures in Parkinson’s.

Background: Preference-based QoL measures are used to generate health utilities in economic evaluations. Such measures are mostly generic, with the advantage of facilitating priority setting across disease areas, however they have often been criticised for being insensitive or failing to capture important aspects of health in specific populations, including people with Parkinson’s, as their QoL may be associated with attributes not valued by those generic measures.

Methods: Ten databases were searched up to July 2015 and studies were included if preference-based values were measured or mapped to from a non-preference based QoL measure and reported in people with Parkinson’s. Study characteristics, the measures used and utility values were extracted to pre-designed forms. Construct validity, responsiveness and reliability of the measures were assessed.

Results: 54 of 2,758 studies were included, of which EQ-5D and PDQ-39/8 were the most frequently used preference-based and Parkinson’s specific QoL measure respectively. The EQ-5D was generally shown to be able to discriminate between different patient groups and was responsive to health changes however the extent to which it exhibited convergent validity and reliability in Parkinson’s was less clear. Four out of five mapping algorithms from PDQ-39/8 to EQ-5D did not use half of the PDQ-39/8 dimensions (4/8), stigma, social support, cognition and communication to map.

Conclusions: Despite the overall validity of EQ-5D in Parkinson’s, the absence of mental health and wellbeing aspects in the mapping algorithms suggest it may be limited in capturing important aspects in Parkinson’s. There is thus potential for misrepresentation of PwP’s values in economic evaluations with the current health care decision making framework. There is scope for the development of methods to value Parkinson’s specific QoL attributes such as those included in the PDQ-39/8.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/the-value-of-preference-based-measures-of-quality-of-life-in-people-with-parkinsons-a-systematic-review/