The survey aimed to better understand the perceptions, experiences, and educational needs of patients who have nonmotor symptoms of Parkinson disease as well as their caregivers.
An online survey of people with Parkinson disease (PD) and their caregivers about nonmotor symptoms (NMS) found that caregivers reported more NMS than the patients themselves, such as cognitive and neuropsychiatric symptoms.
The 17-question survey was sent to the 3685 households belonging to the Parkinson and Movement Disorders Alliance (PMDAlliance), a nonprofit organization for people with PD and their caregivers. The survey aimed to better understand the perceptions, experiences, and educational needs of patients who have NMS of PD as well as their caregivers.
NMS may include cognitive impairment, neuropsychiatric symptoms, sleep disorders, and olfactory dysfunction, some of which may precede the development of motor dysfunction such as bradykinesia, rigidity, and tremor. NMS may have a greater impact on quality of life than motor symptoms and are significantly associated with reduced well-being, the researchers reported.
The online survey included separate questions for both patients and caregivers. A total of 700 individuals responded; 378 (54%) were caregivers and 287 (41%) were patients. The remaining 5% fell into the “other” category.
About 90% of the respondents reported having experience with NMS, including sleep problems (84%), cognitive symptoms (76%), anxiety (65%), depression (56%), hallucinations (40%), and delusions (23%). NMS were reported by more caregivers (97%) than patients themselves (80%). NMS had at least some impact on quality of life for 84% of the respondents; 48% indicated that NMS represented a greater challenge than motor symptoms.
Caregivers were also more likely than patients to respond that NMS were more challenging than motor symptoms (58% vs 32%).
The authors said the difference in how the caregivers and patients viewed the prevalence of NMS may stem from caregivers being able to detect subtle psychiatric and cognitive changes before the patients themselves. Caregivers’ observations could also be useful to clinicians treating the patient; their focus may be centered more on the typical motor symptoms than NMS. Other studies and surveys have indicated that caregivers tend to report a greater severity of symptoms than the patients themselves.
In addition, a greater proportion of patients reported that NMS had a negative impact on their daily routines and social activities than caregivers, showing different perceptions of the impact of NMS on daily life between patients and their caregivers.
On the topic of education, among respondents without NMS or experience in caring for patients with NMS, only 46% preferred to receive NMS education “at the very beginning” of the illness or soon after PD was diagnosed. One-third preferred to receive education only after the onset of symptoms or after living with PD for a few years. Providers may want to be aware of these preferences with regard about how to frame and time conversations about sensitive topics.
The survey highlights the need for improved recognition and education about the impact and effects of NMS, the authors said.
Hermanowicz N, Jones SA, Hauser RA. Impact of non-motor symptoms in Parkinson’s disease: A PMDAlliance survey [published online August 5, 2019]. Neuropsychiatr Dis Treat. doi: 10.2147/NDT.S213917.