Survey responses from 700 Parkinson disease patients and their caregivers show a majority of patients report problems with non-motor symptoms.
Robert Hauser, MD
Non-motor symptoms (NMS) pose a significant challenge for Parkinson disease (PD) patients, according to a new survey.
In the survey, conducted by the Parkinson and Movement Disorder Alliance (PMD Alliance), 84% of PD patients and their caregivers report symptoms, such as sleep problems, cognitive challenges, anxiety, depression, hallucinations, and delusions have a negative impact on quality of life.
The 17-question survey was sent to 3685 households, with 700 individuals responding, 378 of which were caretakers and 287 of which were PD patients.
The investigators created 2 different sets of questions, 1 for respondents who answered affirmatively to a question gauging whether they or their care recipient experiences NMS and 1 set of questions for respondents who indicated no current experience with non-motor symptoms.
The onset of NMS occurred within the first 3 years after PD diagnosis for 53% of the respondents and within the first 5 years after diagnosis for 72%.
In the survey, 84% said non-movement symptoms negatively impacted their ability to sleep, 72% said they struggled to complete self-care, 58% reported problems socializing, 69% claimed struggled going to restaurants, 61% reported problems going to movies, and 57% said they were impacted in the ability to make plans with family and friends.
Also, 76% reported cognitive symptoms, 65% reported anxiety, 56% reported depression, 40% reported hallucinations, and 23% reported delusions.
The investigators also found a greater proportion of PD patients reported a substantial impact of non-motor symptoms on concrete activities of daily living or social interaction than care partners, which could be reflective of discordance between the perception of general symptoms and tangible effects on actual activities.
Robert Hauser, MD, Director, Parkinson's & Movement Disorder Center, College of Medicine Neurology, University of South Florida, said in an interview with MD Magazine® said the study could yield better therapeutics to treat the disease.
“I think it highlights just how troublesome non-motor symptoms are and it highlights that we need to evaluate such symptoms, we need to when we see such patients be sure to include the care partner in the discussion and the evaluation of non-motor symptoms and then we need to apply the therapeutics that we have but we also need new and better therapeutics,” Hauser said. “Ultimately some of these things are going to be very hard to get symptomatic therapies for like cognition, so we need to work hard to develop therapies to slow progression of disease.”
The investigators also found that care partners were more likely than patients to report that non-motor symptoms were more challenging than motor symptoms, while 50% of the respondents indicated that their friends and family had very little or no understanding of the impact of PD on daily living.
Responders indicated that 70% of PD patients routinely visited a movement disorder specialists and the majority of responders indicated that they wanted to receive additional education regarding NMS, with 72% wanting further education on cognitive symptoms and 67% wanting additional education on sleep problems.
Hauser went on to say that the differences between what the patients reported and what the caretakers reported was striking and warrants future studies.
The study, “Impact of non-motor symptoms in Parkinson’s disease: a PMDAlliance survey,” was published online in Neuropsychiatric Disease and Treatment.