Document Type

Poster

Publication Date

2021

Abstract

The emPowered!® Tool is a communication resource to help people with Parkinson’s, family members, and clinicians discuss symptoms and disease progression more effectively and efficiently.

In a PMD Alliance survey, 63% of people with Parkinson’s (PwP) reported that they forgot to share something important with their doctor, 57% reported that they minimize the impact of their symptoms when talking with their doctor, and 30% were concerned that they would be perceived as a complainer. This data, combined with ethnographic research of hundreds of PwP, care partners, and clinicians, motivated PMD Alliance to develop the emPowered!® Tool.

Not simply a symptom tracker, the emPowered!® Tool addresses a much deeper issue – the differing perceptions of disease impact as experienced by different people. This tool, presented in a workbook format, improves communications and prompts deeper conversation and understanding between PwP, care partners, and clinicians. The emPowered!® Tool is distributed on the PMD Alliance website and through a support group leader licensing program to our network of more than 1,000 support group leaders, who in turn reach more than 25,000 PwP.

Comments from providers who have patients utilizing the tool: “We all get on the same page quickly and share a clear overview of what happened between visits.” “Tracking symptoms progression or abatement over time allows for more effective monitoring of efficacy of interventions.”

Recipients of the emPowered!® Tool reported a 75% increase in understanding the need to share in-depth information with physicians. 82% reported an increased understanding of the value of tracking trends related to disease progression. 77% felt increased confidence in expressing themselves in conversations with physicians. 84% reported increased appreciation of the value of ensuring family members understands disease process, medications and symptoms.

Comments

Poster presented at the Brain & Behavioral Health Research Day 2021

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