Parkinson's patients and caregivers face severe challenges: survey

Stakeholders face problems such as gaps in services, financial burdens, and difficulty in care

Parkinson's patients and caregivers face severe challenges: survey

Parkinson Canada, an advocacy group for those living with Parkinson’s Disease in the country, has released the results of an online survey looking into the challenges that confront patients, along with their caregivers and health care providers (HCPs).

According to the study, which included over 1,400 participants, three out of 10 people didn’t get a diagnosis until six months after they first reported their symptoms to a medical professional; almost two out of 10 waited more than a year.

Access to medical specialists was rated poor or very poor by nearly one in four people living with the disease; a greater number found access to movement disorder clinics or a Parkinson’s nurse poor or very poor. When asked to rate access to long-term care facilities, four in 10 people living with Parkinson’s gave similarly low scores.

On the positive side, nearly nine out of 10 rated oral medication access as good, very good, or excellent, and eight out of 10 were similarly constructive on access to a family doctor.

When it came to access to services and treatments, HCPs were generally more critical than those living with Parkinson’s and their care partners. They rated wait times for services and treatments even more negatively, with four in 10 saying wait times for long-term care facilities, access to therapies, medical specialists, Parkinson’s nurse specialists, and movement disorder clinics were poor or very poor.

Almost half of caregivers rated access to long-term care facilities as poor or very poor; there was similar negative sentiment on access to movement disorder clinics and Parkinson's nurse specialists. They also gave poor or very poor ratings for access to mental health services (nearly three in 10 caregivers) and wait times for such services (nearly four in 10). One in four caregivers said they were working a full-time job while caring for a partner with Parkinson’s; three in four  were female, and one in four were more than 75 years old.

The disease also presents mental and psychological burdens. People with Parkinson’s reported feelings of depression, anxiety, stress, loss of confidence, and sadness. On the other hand, caregivers said they often feel stressed, exhausted, guilty for not doing enough, and frustrated toward the person with Parkinson’s.

Looking at the financial burden, the survey found three quarters of people living with Parkinson’s and their care partners having to pay out of pocket for exercise programs; 44% also shoulder physiotherapy themselves, and more than a third pay for some medication by themselves. Four out of 10 said they’d find paying for medications a major financial burden if they got no reimbursement from insurers; a nearly equal number said the same about other treatments.

“It's important that individuals receive a correct diagnosis as early as possible and have adequate access to ongoing specialized care,” said Dr. David Grimes, lead author of the Canadian Guidelines on Parkinson's Disease and head of the Division of Neurology at the Ottawa Hospital. “Even this care is limited and follow-up visits are too far apart.”


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