Addressing nonmotor symptoms of Parkinson’s empowers patients

Neglecting nonmotor symptoms also is detrimental to exercise, study finds

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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People with Parkinson’s disease who have more severe nonmotor symptoms are less likely to feel empowered to manage their own disease, and also are less likely to get regular physical exercise, a new study shows.

These findings “suggest that to promote physical activity and patient activation there is a need to identify and treat the nonmotor symptoms of [Parkinson’s],” researchers wrote. “This implication is important because the non-motor symptoms are often neglected.”

The study, “Socio-Clinical factors associated with Parkinson’s disease–related specific self-management behaviours,” was published in Chronic Illness.

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People living with Parkinson’s disease can take many steps to manage their own health, ranging from going to doctors appointments and taking medications as directed, to eating healthily and exercising.

In this study, scientists in Israel set out to identify social and/or clinical factors that affect whether people with Parkinson’s feel empowered to manage their own health. Identifying these factors can help in designing more targeted forms of support to empower patients who most need it.

The scientists collected data from 62 people with Parkinson’s receiving care at a center in Haifa, Israel. About two-thirds of these patients were men, and the average age was in the late 60s.

Measuring both motor and nonmotor symptoms

The participants underwent a battery of standardized assessments measuring the severity of motor symptoms and nonmotor symptoms. They also were asked about how often they engaged in physical exercise, their social and familial support systems, and whether they used rehabilitative treatments like physical or occupational therapy.

Participants also completed a measure of patient empowerment called the Patient Activation Measure, or PAM-13.

“The PAM-13 is a self-reported, validated and licensed tool to measure a patient’s knowledge, skills and confidence for self-management,” the researchers wrote, adding this tool “captures the extent to which people feel engaged and confident in taking care of their health conditions.”

With all these data in hand, the researchers conducted statistical analyses looking for factors that were associated significantly with patient empowerment.

Results showed that patients who reported more familial and social support also tended to report higher scores on the PAM-13, indicating they felt more confident and capable about managing their own health. Patients with more family support also were more likely to engage in regular physical exercise.

Severity of symptoms makes a difference

The severity of both motor and nonmotor symptoms were significantly negatively correlated with PAM-13 scores, indicating that patients with more severe symptoms tended to feel less empowered about managing their own health. In particular, statistical tests showed a strong connection between worse nonmotor symptoms and less empowerment.

Results also showed that patients who reported more nonmotor symptoms and/or cognitive issues were less likely to exercise regularly.

“Cognitive status, number of non-motor symptoms and to a lesser degree the severity of motor symptoms, are the prominent explanatory variables of engagement in physical activity and patient activation,” the researchers wrote.

Based on these findings, the researchers proposed that programs aiming to promote self-management in Parkinson’s should include explicit efforts to address nonmotor symptoms. “For example, self-management programs may include education about common non-motor symptoms and possible coping strategies and may integrate caregivers of patients with cognitive decline,” they wrote.

The researchers noted this study was fairly small, and most of the patients were in middle stages of Parkinson’s without severe cognitive issues, so more research is needed to confirm how generalizable these findings are. They also noted that most patients here reported not using rehabilitative treatments, so more work is needed to see which factors affect patients’ engagement with rehabilitative resources.