Objective: To identify the concerns of those newly diagnosed with Parkinson’s (up to three years since diagnosis) through an online survey and utilize findings to inform patient-centered information, tools and resources to assist this population and their care teams in managing their disease and quality of life.

Background: There has been little research on the needs and priorities of those newly diagnosed with PD from the patient and care partner perspective. There is also lack of information on the role of the diagnosing physician in providing educational information. Greater knowledge of clinical and non-clinical issues that are of importance to the newly diagnosed and identification of mechanisms for the provision of this information will help foster improved patient-centered approaches to disease management, better health outcomes and enhanced quality of life.

Method: In January 2019, an online survey was sent to 3,052 people with PD and 2,117 care partners who called with the Parkinson’s Foundation Helpline in the last three years. A quantitative analysis was conducted on the responses, including cross-comparisons on age, gender, area of residence, years experiencing symptoms before diagnosis and provision of educational materials from their diagnosing physician within six months of diagnosis. A qualitative analysis was conducted on the open-ended responses through thematic analysis.

Results: The survey resulted in a 21.8% response rate. Of the respondents, 65.8% were people with PD and 34.2% were care partners. Of those with PD, 74% identified as newly diagnosed. Within the first six months of diagnosis, 42% of people with PD and 45% of care partners reported that they did not receive educational materials from the diagnosing physician. Among respondents, 79.4% cited what the future holds; 76.6% cited how fast the disease will progress and 74.6% cited how to live the best possible life as primary concerns within the first three years of diagnosis.

Conclusion: These findings provide insight into the patient-centered concerns of the newly diagnosed and priority placed on information, resources and tools that focus on quality of life. The significant percentage of newly diagnosed people with PD and care partners not receiving information from the diagnosing physicians demonstrate the need to expand understanding of effective strategies to ensure that this population has access to the knowledge and information they need.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/understanding-the-needs-and-concerns-of-newly-diagnosed-people-with-parkinsons-disease/