Sean J Udow1,2,3,4,5, Douglas E Hobson4,5, Galit Kleiner1,6, Mario Masellis1,7,8,9,10, Susan H Fox1,2,3, Anthony E Lang1,2,3, Connie Marras1,2,3. 1. Division of Neurology Department of Medicine University of Toronto Toronto Canada. 2. Edmond J. Safra Program in Parkinson's Disease Toronto Western Hospital University Health Network Toronto Canada. 3. Morton and Gloria Shulman Movement Disorders Centre Toronto Western Hospital University Health Network Toronto Canada. 4. Deer Lodge Movement Disorders Centre Winnipeg Manitoba Canada. 5. Section of Neurology Division of Internal Medicine University of Manitoba Winnipeg Manitoba Canada. 6. Baycrest Health Sciences Centre Toronto Ontario Canada. 7. Cognitive & Movement Disorders Clinic, Sunnybrook Health Sciences Centre Toronto Canada. 8. L.C. Campbell Cognitive Neurology Research Unit Sunnybrook Health Sciences Centre Toronto Canada. 9. Hurvitz Brain Sciences Program Sunnybrook Research Institute University of Toronto Toronto Canada. 10. Institute of Medical Science University of Toronto Toronto Canada.
Abstract
BACKGROUND: In our clinical experience, people with Parkinson's disease (PwP) and their caregivers have difficulty understanding the complexities of the disease, which has a multitude of symptoms and involved therapies. We undertook a needs assessment to understand the need for, and to guide the development of, an educational tool. METHODS: We invited PwP, caregivers and health care providers (HCP) from across Canada to participate in an online survey to determine the need and desired content for such a tool. RESULTS: Respondents included 450 PwP, 335 caregivers, and 96 HCP from across Canada. 86.5% of HCP reported that it was "very important" for patients to understand issues in PD and 84.4% would use a visual aid to explain these issues. Results showed that 81.9-95.7% of caregivers and PwP were not "very satisfied" with the explanations of all domains in PD. Non-motor symptoms and cognitive issues were highly ranked by all groups as difficult to understand or explain. Older PwP (those with PD for less than 5 years and those who reported that their HCP spent less than 15 minutes counselling in each clinic visit) were less likely to fully understand and be satisfied with the explanations of most issues in PD. INTERPRETATION: There is a need for better patient education when discussing PD issues in the clinical setting. Older PwP that have been recently diagnosed have the greatest educational needs. Potential users indicate that a visual aid would help and non-motor symptoms, particularly cognitive issues, need to be a focus of such a tool.
BACKGROUND: In our clinical experience, people with Parkinson's disease (PwP) and their caregivers have difficulty understanding the complexities of the disease, which has a multitude of symptoms and involved therapies. We undertook a needs assessment to understand the need for, and to guide the development of, an educational tool. METHODS: We invited PwP, caregivers and health care providers (HCP) from across Canada to participate in an online survey to determine the need and desired content for such a tool. RESULTS: Respondents included 450 PwP, 335 caregivers, and 96 HCP from across Canada. 86.5% of HCP reported that it was "very important" for patients to understand issues in PD and 84.4% would use a visual aid to explain these issues. Results showed that 81.9-95.7% of caregivers and PwP were not "very satisfied" with the explanations of all domains in PD. Non-motor symptoms and cognitive issues were highly ranked by all groups as difficult to understand or explain. Older PwP (those with PD for less than 5 years and those who reported that their HCP spent less than 15 minutes counselling in each clinic visit) were less likely to fully understand and be satisfied with the explanations of most issues in PD. INTERPRETATION: There is a need for better patient education when discussing PD issues in the clinical setting. Older PwP that have been recently diagnosed have the greatest educational needs. Potential users indicate that a visual aid would help and non-motor symptoms, particularly cognitive issues, need to be a focus of such a tool.
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