Nonmotor Symptoms of Parkinson’s Disease Underreported and Undertreated
More than 2 in 3 patients with Parkinson’s disease (PD) or their caregivers affirm the presence of nonmotor symptoms that significantly and negatively affect their quality of life. Of 3,500 people contacted, approximately 650 caregivers and patients responded to a survey from the Parkinson’s and Movement Disorders Alliance (PMDAlliance). Nonmotor symptoms endorsed by respondents included sleep problems (84%), cognitive challenges (75%), anxiety (65%), depression (55%), hallucinations (41%) and delusions (24%).
Importantly, 49% of respondents said nonmotor symptoms were more challenging or much more challenging to live with compared to nonmotor symptoms. Both patients and their caregivers reported that their ability to sleep (84%), plan for future events (76%), socialize (71%), make plans with family/friends (70%), be intimate with their partner (68%), complete household chores (68%), and run errands (67%) were negatively affected by nonmotor symptoms.
According to the survey, caregivers recognized nonmotor symptoms more than patients, particularly hallucinations (51% of caregivers; 23% of patients) and delusions (32% of caregivers; 8% of patients.) However, it is estimated that only 10% to 20% of patients with PD report these symptoms. Care partners were also more likely to recognize cognitive challenges, anxiety and depression.
Discussing the survey, Sarah Jones, MPA, MS, CEO of PMDAlliance highlighted that many patients and caregivers do not discuss nonmotor symptoms with their doctors and may not even recognize that nonmotor symptoms are part of PD. A key goal of the PMDAlliance is to educate patients to initiate such discussions—asking their physician about the nonmotor symptoms they experience—rather than expecting the doctor to ask about every nonmotor symptom in every patient at every encounter. Ms. Jones commented, “We urge the entire Parkinson’s community—from the people with Parkinson’s and care partners, to health care professionals and support groups—to continue initiating conversations about Parkinson’s symptoms, especially the nonmovement ones that greatly impact day-to-day living.”
The PMDAlliance has added educational materials to their website and also publishers a workbook for patients and caregivers to help them assess the presence of nonmotor symptoms in their lives. The aim is that, when shared with clinicians, the workbook will facilitate a more efficient and effective conversation about nonmotor symptoms to increase appropriate referrals and follow up as needed. To learn more and receive copies of the workbook for your patients visit https://www.pmdalliance.org/physician-partner-resources/.