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Knowledge and attitudes of Parkinson’s disease risk in the Gaucher population
Author(s) -
Zaretsky Leah,
Zeid Natasha,
Naik Hetanshi,
Alcalay Roy N.,
Balwani Manisha
Publication year - 2020
Publication title -
journal of genetic counseling
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.867
H-Index - 52
eISSN - 1573-3599
pISSN - 1059-7700
DOI - 10.1002/jgc4.1185
Subject(s) - disease , medicine , population , public health , health care , pediatrics , family medicine , pathology , environmental health , economics , economic growth
Individuals with Gaucher disease have an increased risk of developing Parkinson's disease as compared to the general population. Though the association is well‐known in the scientific community, it is unclear if individuals with Gaucher disease are being counseled on the increased risk. To date, no studies have been performed assessing whether Gaucher disease patients are aware of the increased risk of developing Parkinson's disease. Furthermore, it is unknown how and when individuals with Gaucher disease wish to learn of the increased risk. To assess this, an online survey was administered to Gaucher disease patients. We hypothesized that most individuals with Gaucher disease have been informed of the risk, and that they wish to be told of the risk by their health care provider at the time of diagnosis. Study results revealed that of 125 individuals with Gaucher disease, 80% previously knew about the association with Parkinson's disease, 83.7% preferred to find out about the increased risk from a health care provider, and 71.0% wanted to find out at the time of Gaucher disease diagnosis. These results suggest that health care providers should counsel Gaucher disease patients about the increased Parkinson's disease risk, and they should do so at the time of diagnosis.