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PatientsLikeMe Study Reveals Greater Burden for Younger Patients With Parkinson's Disease
CAMBRIDGE, Mass., August 20, 2008
A recent study by PatientsLikeMe, the leading health data sharing community for patients with life-changing conditions, reveals Young-Onset Parkinson’s Disease (YOPD) patients (individuals with symptom onset at 40 years or younger) experience more non-motor symptoms than those with “classic” Parkinson’s disease (PD). The study, based on a survey of more than 300 patients, questioned PD and YOPD patients about 30 “non-motor symptoms” including thinking, digestion and mood. Survey results indicate YOPD patients had an average of three more non-motor symptoms than their older counterparts.
“These YOPD patients have significant family, work and financial responsibilities and they are experiencing non-motor symptoms that disrupt their everyday life,” says Paul Wicks Ph.D., Research & Development Director at PatientsLikeMe and author of the study. “As more and more patients share this kind of information, we hope to illuminate the differences between these two types of the disease.”
Other key study findings include:
- The average age of symptom onset for respondents with classic Parkinson’s is 54, and the average age at onset for YOPD respondents is 33 years old.
- YOPD patients report suffering from a number of symptoms, which could interfere with work or driving such as daytime sleepiness (33%) or dizziness (52%).
- Of the non-motor symptoms listed on the survey, the most common reported among YOPD respondents are insomnia (74%), concentration problems (74%), sadness (67%), pain (67%) and anxiety (52%).
- Two out of three (67%) YOPD respondents report a decreased sex drive and 22% report difficulties having sex.
To date, more than 200 of the PatientsLikeMe Parkinson’s community members are young-onset. Adds Dr. Wicks, “Although it’s too early to say what might be causing these differences, we would suggest that neurologists need to pay more attention to the non-motor symptoms in young-onset PD patients as they might appear more often than in more typical PD.”
Details of the research findings, as well as member interviews about living with Parkinson’s, are available on the PatientsLikeMe blog (http://blog.patientslikeme.com).
METHODOLOGY
This survey was conducted via email by PatientsLikeMe among registered users of its online Parkinson’s community. An email invitation was first sent in January 2008 to 1,019 Parkinson’s and YOPD patients, receiving 307 fully completed surveys. For the purpose of this survey, a Young Onset Parkinson’s patient is defined as an individual who first experiences symptoms before the age of 40.
NOTE TO EDITOR: Any data reported from this survey must be sourced as originating from PatientsLikeMe.
About PatientsLikeMe
PatientsLikeMe (www.patientslikeme.com) is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, multiple sclerosis, Parkinson's disease, HIV, mood conditions (including depression, bipolar, anxiety, OCD and PTSD), fibromyalgia and chronic fatigue syndrome/myalgic encephalomyelitis. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.