Survey Shows Canadian Parkinson’s Community’s Key Concerns

Long waits for diagnosis, limited access to specialized treatments and services, and out-of-pocket healthcare costs are among key concerns of Parkinson’s patients, caregivers, and medical-service providers, according to a Parkinson Canada survey.

The organization created the 30-minute online survey to better understand the challenges that patients, caregivers, and providers face. It was conducted between Sept. 29 and Oct. 24, 2017.

Fifty-seven percent of the patients who participated were men, and most were aged 65-74 years. About four in five were married or living with a partner. Seven in 10 were retired.

An important finding was that patients face long waits for a diagnosis, with two out of 10 saying they waited over one year. Almost one in four patients classified their ability to gain access to medical specialists as poor or very poor. Sentiment was similar on accessing movement disorder clinics, a Parkinson’s nurse specialist, and long-term care facilities.

Three in five patients said they needed additional information from Parkinson Canada or one of its support groups. Four in 10 reported depression, anxiety, stress, sadness, and loss of confidence. Access and waiting times for mental health services were a problem for many patients.

In contrast, nine of 10 patients and caregivers rated access to oral treatments and to a family doctor as good, very good or excellent.

Providers were more critical. Over half reported poor or very poor access to movement disorder clinics, and three out of 10 rated access to speech and swallowing therapy as poor or very poor.

Providers were even more negative on waiting times for specialized services and treatments, with four in 10 rating them as poor or very poor.

The patient barriers that providers mentioned included too few medical specialists, limited information and understanding of Parkinson’s, scarce availability of educational resources, insufficient counseling resources, and too few support groups.

The findings also showed the toll that Parkinson’s takes on caregivers. More than one in four reported that they care for a patient while having a full-time job. Seventy-seven percent of caregivers were women and most were aged 75 years or older.

Nearly half of caregivers said access to long-term care facilities was poor or very poor. They were also concerned about access to movement disorder clinics, Parkinson’s nurse specialists, and mental health services.

Among the health problems that caregivers experienced were stress, exhaustion and feeling guilty that they were not doing enough. They also mentioned frustration towards the patient, helplessness and anxiety.

“People with Parkinson’s often suffer from complex physical and non-motor [non-movement] health disorders, which can affect the whole family,” Joyce Gordon, the CEO of Parkinson Canada, said in a press release. “We know that caregivers are heavily burdened, financially and emotionally. Our mission is to help close the gap for them and build awareness of Parkinson’s.”

The disease also represents a significant financial burden. Four in 10 respondents reported difficulty paying health care bills, including medication, exercise, physiotherapy, and speech and swallowing therapy.

About three-fourths of patients and care partners reported paying for exercise programs. Forty-four percent said they paid for physiotherapy and a third said they paid for at least one type of medication. Four out of 10 said paying for medication imposes a major financial burden on them if it’s not reimbursed by insurers.

Three out of four care providers perceived medication and other therapies as a major burden without financial assistance

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

“If the survey shows that Canadians are experiencing considerable gaps and delays to care, this hinders [providers] from effectively recommending treatments and lifestyle changes that would help patients better manage the disease,” he said.

Parkinson Canada plans to share the survey results with governments and others during Parkinson Awareness Month in April. The goal is to raise awareness as a way of improving access and decreasing wait times. It will also share the information with the public and donors.

It called for more effort on research and services for Parkinson’s at a time when healthcare demand is increasing as the population ages. It also called for more investment to provide medical professionals with educational opportunities and healthcare resources.