Udow Sean J, Hobson Douglas E, Kleiner Galit, Masellis Mario, Fox Susan H, Lang Anthony E, Marras Connie
Division of Neurology Department of Medicine University of Toronto Toronto Canada.
Edmond J. Safra Program in Parkinson's Disease Toronto Western Hospital University Health Network Toronto Canada.
Mov Disord Clin Pract. 2017 Nov 27;5(1):66-74. doi: 10.1002/mdc3.12563. eCollection 2018 Jan-Feb.
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.
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.
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.
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.
根据我们的临床经验，帕金森病患者（PwP）及其护理人员难以理解该疾病的复杂性，因为它有多种症状且涉及多种治疗方法。我们进行了一项需求评估，以了解对一种教育工具的需求并指导其开发。
我们邀请了来自加拿大各地的帕金森病患者、护理人员和医疗保健提供者（HCP）参与一项在线调查，以确定此类工具的需求和期望内容。
受访者包括来自加拿大各地的450名帕金森病患者、335名护理人员和96名医疗保健提供者。86.5%的医疗保健提供者报告称，让患者了解帕金森病相关问题“非常重要”，84.4%的人会使用视觉辅助工具来解释这些问题。结果显示，81.9% - 95.7%的护理人员和帕金森病患者对帕金森病所有领域的解释“不太满意”。所有群体都将非运动症状和认知问题列为难以理解或解释的高度优先事项。年龄较大的帕金森病患者（患病时间少于5年且报告其医疗保健提供者每次门诊咨询时间少于15分钟的患者）不太可能完全理解并对帕金森病大多数问题的解释感到满意。
在临床环境中讨论帕金森病问题时，需要更好地对患者进行教育。最近被诊断出的年龄较大的帕金森病患者有最大的教育需求。潜在用户表示视觉辅助工具会有所帮助，并且非运动症状，尤其是认知问题，需要成为此类工具的重点。
