Young Onset Parkinson’s Presents Unique Challenges, Article Asserts
People with young onset Parkinson’s disease have unique features that should be taken into account when providing care and conducting research, a recent review article highlights.
The paper, “Young Onset Parkinson’s Disease: A Modern and Tailored Approach,” was published in the Journal of Parkinson’s Disease.
Parkinson’s usually manifests in the latter years of life; the mean age at onset is upward of 60 years. In up to 5% of cases, however, symptoms start decades earlier — before age 40. People who develop symptoms when they are younger than 21 are said to have juvenile Parkinson’s, whereas in young onset Parkinson’s disease (YOPD), symptoms appear between the ages of 21 and 40.
YOPD is distinct from other forms of Parkinson’s, both in terms of its underlying genetics — people with YOPD are more likely to have a Parkinson’s-related mutation than people who develop Parkinson’s later in life — and because people with YOPD play different roles in society than those in other age groups.
“These differences make YOPD a unique group, which requires a personalized multidisciplinary approach to management, assessing and subsequently targeting the specific needs of people with YOPD,” researchers wrote. “In this viewpoint we highlight unique features of YOPD, and its implications for daily clinical practice.”
Some mutations can increase Parkinson’s risk, or else cause the disease outright. Testing for these mutations in people with YOPD can be important, particularly so that people can make informed decisions about having biological children, and the chance that they would pass those mutations to their children.
However, there also are limitations to genetic testing. At present, the identification of any one Parkinson’s-related mutation doesn’t provide a lot of useable prognostic information, both because of limited knowledge about individual mutations and because of substantial person-to-person variation among people with the same mutation. Currently, there are no treatments aimed at people with specific Parkinson’s-associated mutations, However, some such treatments are in clinical development.
“These emerging therapeutic implications for specific genotypes will probably be the main driver that will change the attitude towards genetic testing in patients and doctors alike,” researchers wrote.
Compared to other types of Parkinson’s, dystonia (uncontrolled muscle contractions) is more common in YOPD. As such, it is important that clinicians consider Parkinson’s as a potential diagnosis in people experiencing dystonia, even if they aren’t of a typical age for the disease.
“Especially exercise-induced dystonia in patients aged 21 or older should always raise the suspicion of [Parkinson’s],” researchers wrote.
People with YOPD are more likely to experience levodopa-induced dyskinesia (uncontrolled movements brought on by dopamine-replacing therapies like levodopa). While dopamine-replacing therapies are more effective at managing motor symptoms, other therapies have a lower risk of dyskinesia and other side-effects, according to the article.
“Hence, starting pharmacological treatment in people with YOPD has to be made in close collaboration with the patient and their caregivers and carefully monitored. There is need for a patient centered approach using shared decision making,” they wrote.
Compared to people with other types of Parkinson’s, those with YOPD are likely to be at a different stage in life. For example, they often have a job, whereas older people with Parkinson’s are more likely to be retired. While Parkinson’s itself may affect a person’s ability to perform on the job, the extent of this effect is heavily influenced by whether appropriate accommodations can be made, Making such accommodations requires that patients, as well as their employers and colleagues, be sufficiently educated about Parkinson’s.
“Hence, targeted workplace education should be an element of rehabilitation programs for people with YOPD,” the researchers wrote.
YOPD also is likely to affect individuals’ mental health and interpersonal relationships — though data on these effects is limited and sometimes conflicting, pointing to a need for more research. Similarly, the authors highlighted a need for more research concerning YOPD and pregnancy, including the benefits or risks of different treatment regimes.
“Although Parkinson’s disease is a complex and debilitating condition, it is also a treatable one if a comprehensive, integrated and multidisciplinary approach is applied,” co-editor-in-chief of the Journal of Parkinson’s Disease Bastiaan R. Bloem, MD, PhD, of Radboud University Nijmegen Medical Center, Netherlands, said in a press release.
“Of course, modern management means much more than just caring for our patients,” he said. “We increasingly realize that optimal care can only be achieved by working closely together with patients and their families, in a process of co-creation and participatory care, with obviously different but equally important contributions by both professionals and patients.”