Abstract

About 5-10% of the total Parkinson’s population are diagnosed from the ages of 21-45 and thus characterized as having Young-Onset Parkinson’s Disease (YOPD). Since YOPD is diagnosed during the most productive years of a patient’s life, the disease can potentially have a larger impact on quality of life (QoL), in part due to the unique psychosocial issues younger patients face. The goal of the review is to (i) identify QoL instruments utilized in YOPD and (ii) describe the studies that have utilized these instruments. A systematic literature search based on PRISMA guidelines was conducted from 2004 to 2014 using electronic databases such as Pubmed, Medline, Cochrane, and Ovid. QoL instruments validated in the general population as well as those validated in Parkinson’s Disease (PD) were included in this review. The search was limited to studies using the English language. Studies conducted exclusively on PD patients diagnosed after age 50 and review studies, were excluded. A total of 10 QoL instruments were identified (5 disease-specific, 1 condition-specific, and 4 generic). PD-specific instruments included the Parkinson’s Disease Questionnaire-39 and the Parkinson’s Impact Scale. Although frequently utilized in YOPD patients, all instruments were validated in either regular-onset PD patients (initial diagnosis greater than 45 years of age) or the general population. The literary search did not yield any YOPD-specific QoL instruments. Different experiences, emotions, and psychological issues exist between YOPD and regular-onset PD. Yet, QoL instruments validated in PD were commonly utilized in YOPD. Thus, there is a need to create YOPD-specific QoL instruments to capture the impact of this condition on young patients. In addition, the development of new YOPD-specific instruments may allow clinicians the opportunity to better understand the complexity of problems in YOPD patients to guide appropriate care of their unique condition.

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