Education Update: New book available and thanks for your input

New book available

Parkinson Canada is very pleased to be able to offer you Parkinson’s Disease: An Introductory Guide, a new book developed by Dr. Ron Postuma and Dr. Julius Anang in collaboration with McGill University Health Centre. You can read and download the PDF of the book here.

Joyce Gordon, Dr. Ron Postuma, Julie Wysocki

This guide will help you better understand Parkinson’s disease. It describes the illness, changes in your body over time, treatment and care options, and possible health problems. There are also quick tips, including information about when and where you can find more help.

As a practical introduction to Parkinson’s disease, it is meant to help you learn about:

  • Symptoms of Parkinson’s and how you can spot them
  • Treatment and care options
  • Tips and strategies for you to take charge of your health
  • Possible problems to watch out for
  • When and where you can find more help.

It’s an excellent resource to review with your family and to bring to appointments with your health care team. You can also obtain a print copy of this comprehensive book by contacting Parkinson Canada at 1(800) 565-3000 or by email at education@parkinson.ca. (Quantities are limited.)

Educate PD project survey summary

Our sincere thanks go out to the 881 individuals who completed a recent survey for the Educate PD project, supported by Parkinson Canada. Respondents shared their thoughts on the sorts of issues relating to Parkinson’s disease that they need help understanding and explaining. Valuable insight from 450 people living with Parkinson’s, 335 caregivers and 96 health care professionals were compiled and analyzed.

Educate PD project investigators Dr. Sean Udow and Dr. Connie Marras find that: “In our clinical experience, people living with Parkinson’s and their care partners often have trouble understanding various aspects of PD. This understanding may be restricted by the complexities of PD itself and the ability of a health care professional to explain the complexities.”

Educate PD is a project aimed at designing a visual educational tool to help explain and understand Parkinson’s disease. This survey was a critical step in determining what issues the visual aid should address.

The Educate PD questionnaire was designed through a collaborative process between seven clinicians from four Canadian institutions, each with expertise in PD. The investigators categorized PD issues into seven main areas: basic science, diagnosis, motor symptoms, non-motor symptoms, cognitive symptoms, treatment and prognosis. The survey asked people living with Parkinson’s and caregivers to rate how well they understand and how satisfied they were with explanations of each of these areas. The survey asked health care professionals to report how often they encounter patients who have trouble understanding these areas, and how likely they are to use a visual aid to explain these issues.

Results of the survey indicate that the majority of people with Parkinson’s and their care partners do not think they fully understand most issues in PD and are not very satisfied with how their health care providers explain these issues. Similarly, the majority of health care professionals think it’s important for patients to understand PD and the majority would use a visual tool to discuss PD if one was made available.

The main areas of PD identified as poorly understood and poorly explained by all groups included cognitive issues and non-motor symptoms. Treatment, prognosis and basic science were also identified as important, though not as strongly. This study therefore recommends a heavier focus on these areas when designing a visual tool to help discuss Parkinson’s disease.

There was a general lack of understanding and low satisfaction in the explanation of all areas of PD. Overall, the results of this survey support the need to develop a visual tool to help discuss PD. Drs. Udow and Marras plan to use the results of this survey to focus on the content areas identified as the most important to understand and currently the least satisfactorily explained. Since there was a general lack of understanding and low satisfaction in all areas, the investigators will also try to be comprehensive in the creation of this educational tool.

Drs. Udow and Marras expressed their appreciation to all those who responded to the survey.  Parkinson Canada will keep you informed about the development of the Educate PD tool for health care professionals to use with people living with Parkinson’s and their caregivers.

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