Improving Parkinson’s diagnosis
Health care professionals across Canada have a new tool to assist in the diagnosis and treatment of Parkinson’s disease.
The first Canadian Guidelines on Parkinson’s Disease were launched, in July 2012, by Parkinson Society Canada, in partnership with leading Canadian movement disorder specialists. The guidelines are intended for use by a wide range of health professionals: family physicians, neurologists, movement disorders specialists, nurses and allied health professionals (occupational therapists, physiotherapists, speech language pathologists). The goal is to create a consistent standard of Parkinson’s disease diagnosis, treatment and care across Canada.
Parkinson’s disease is complex. However, most Canadians with Parkinson’s do not attend specialized clinics. Health professionals are challenged by “the wide variety of problems that Parkinson’s can cause and uncertainty, in the medical literature, as to what’s the best treatment, particularly as the disease progresses,” says Dr. David Grimes, editor of the Canadian guidelines and director of the Parkinson’s Disease and Movement Disorders Clinic at the Ottawa Hospital.
The new guidelines were written collaboratively by neurologists and movement disorder specialists from across Canada and they are based on the best published evidence and on expert consensus. People with Parkinson’s, surgeons, family physicians, nurses, allied health professionals and Parkinson Society Canada provided input.
“We are delighted to launch the Canadian Guidelines on Parkinson’s Disease, which we believe will lead to better, more consistent and more accessible care for Canadians with Parkinson’s,” says Joyce Gordon, President & CEO of Parkinson Society Canada. “The guidelines will result in early diagnosis, better treatment, increased awareness and better health care policies for Canadians with Parkinson’s.”
The 84 clinical recommendations are grouped under four major headings: communication; diagnosis and progression; treatment options; and non-motor features of Parkinson’s.
The non-motor aspects of Parkinson’s were included, says Grimes, because “as the disease progresses, issues such as blood pressure, bladder problems and mood can be among the most challenging and disabling components of Parkinson’s.” He adds, “These are also areas that I think family physicians, with a bit of knowledge, would be comfortable treating.”
Non-motor symptoms can also begin early in the disease, as Keith Goobie, 54, of Richmond Hill, Ontario can attest. Prior to his Parkinson’s diagnosis in March 2010, Goobie began experiencing cognitive and language changes during brief flashes of difficulty processing information, getting out the right word or keeping up with conversation. Stress made matters worse. Neither Goobie nor the family doctors and neurologists he consulted associated these symptoms with Parkinson’s, initially.
Only after Goobie heard a movement disorder specialist speak at an education event hosted by Parkinson Society Central & Northern Ontario in November 2010, did the penny drop. “When she described some of the cognitive components, I said, ‘that’s me.’”
Now a patient of that neurologist, Goobie is receiving the kind of multidisciplinary, integrated care recommended by the Canadian guidelines – access to a physiotherapist, speech-language pathologist, nutritionist and pharmacist, as needed. He also feels he is getting better medications for his motor and non-motor symptoms.
His wife, Roslyn Patrick, says, “One of the most important things about the new guidelines is that they bring to the attention of medical people that Parkinson’s is not just about shaking. Keith’s eyes twitch. He doesn’t always swallow correctly. His intestines don’t always work properly. There are so many aspects that can be misdiagnosed.”
“If more family doctors and specialists understood the breadth and scope of Parkinson’s, it could reduce a lot of stress for people with Parkinson’s and caregivers.”
As a caregiver, Patrick notes, “Many doctors only want to hear from the patient. This can be difficult if the person has communication problems or may not be aware of issues or may be too embarrassed to bring topics forward. When I accompany Keith to appointments, I am there as his second memory, so he is depending on me to provide input.”
The guidelines encourage caregiver inclusion, patient choice and informed decision-making. They state: “When people with Parkinson’s know what health care professionals recommend and why, they can anticipate what to expect; they are better prepared to navigate the system, ask the right questions, and make the best personal choices.”
The Canadian Guidelines on Parkinson’s Disease were published as a supplement to the July 2012 issue of the Canadian Journal of Neurological Sciences and are available online at www.parkinsonclinicalguidelines.ca. They include an executive summary and a two-page quick reference guide for family physicians.
The guidelines have been endorsed by the Canadian Neurological Sciences Federation and Parkinson Society Canada.
Education materials related to the guidelines were made possible through unrestricted educational grants from Abbott Laboratories, Limited, Merck Canada Inc., Novartis Pharmaceuticals Canada Inc., Teva Canada Innovation and UCB Canada Inc.