Developing and Evaluating a Symptom Management Resource for Young-Onset Parkinson's Disease

Emily Peters, OTDS | Russell Sage College Occupational Therapy Department

Becky Bernhardt, OTD, OTR/L, C/NDT, CAPS, Associate Professor | Department Chair | Capstone Coordinator | Russell Sage College Occupational Therapy Department

Debra Collette, OTD, OTR/L, Program Director, Occupational Therapy | Associate Professor | Russell Sage College Occupational Therapy Department

Dayna Maniccia, DrPH, MS Chair | Interdisciplinary Studies Department | Program director, Public Health | Associate Professor | Russell Sage College

Kristi Lamonica, PhD, Associate Professor of Biology | Chair, Department of Biology and Health Sciences | Russell Sage College

CAPSTONE TOPIC

STUDENT CV

SITE MENTOR CV

PITCH & FLYER

NEEDS ASSESSMENT

DELIVERABLES

GOALS & OBJECTIVES

14 WEEK PLAN

LEADERSHIP

LITERATURE REVIEW

DISSEMINATION PLAN

HOME PAGE

Mission Statement

With this doctoral capstone experience, I aim to produce a symptom-management resource to increase accessibility to quality, evidence-based healthcare, and increase independence over managing symptoms.

I have previously conducted a needs assessment entitled An Exploration of Functional Impact of Young-onset Parkinson's Disease, with the intent to explore lived experience, the functional impact of disease, and quality of life. This needs assessment has revealed areas of functional limitations.

This previous study has determined the common symptoms experienced by individuals with young-onset Parkinson's disease to inform the development of the symptom management resource.

Project Proposal

The Developing and Evaluating a Symptom Management Resource for Young-onset Parkinson's Disease project will comprise of producing and assessing a symptom management resource, for individuals with young-onset Parkinson’s disease (YOPD). The aim of this project is to provide individuals with YOPD knowledge, resources, and interventions for symptom management techniques, a sense of autonomy over their care, and access to interventions via a resource in the form of both a PDF, and a booklet to improve their quality of life. The intent is to broadcast the resource globally to allow people in all countries opportunity to understand their symptoms and manage them using sound practices. The importance of this is profound, as diagnosis, treatment and management are viewed and provided very differently across our globe.

PROCESS

I have disseminated a comprehensive survey to individuals with young-onset Parkinson’s disease to evaluate performance in various functional areas, including physical, cognitive, emotional, and social contexts. I have also evaluated quality of life and engagement in life roles within this needs assessment; the survey has determined the changes to quality of life and life roles due to motor, and non-motor symptoms of YOPD. Following the needs assessment, I am producing a symptom management resource, containing recommendations and interventions for the symptoms and experiences determined in the survey. This symptom management resource will be disseminated to individuals with YOPD, and medical professionals. The symptom management resource will be provided in the format of a PDF and a booklet.

HEALTHCARE ACCESSIBILITY

Half of the global population, approximately 3.5 billion people, still do not have access to necessary health care (World Economic Forum, 2022). The adoption of digital healthcare technologies and services is a crucial step towards improving the consistency and quality of healthcare services, specifically in developing nations (World Economic Forum, 2022). Both urban and rural areas are impacted by socioeconomic determinants of health; even in developed countries, social determinants have a significant impact on your access to healthcare (World Economic Forum, 2022). Patients frequently depend on community hospitals, which are often inadequate for handling specialized cases (World Economic Forum, 2022). The implementation of a symptom management resource will permit individuals to have access to evidence-based occupational therapy interventions in the forms of an online PDF, or via a booklet provided by medical professionals for home use.

PDF RATIONALE

Global internet usage peaked in 2021 with 4.9 billion users; approximately two thirds of the world's population is online (Statista, 2023). Without regard to a person's physical location, the Internet has developed into a channel for interactions and collaborations between people, as well as a broadcasting and information-dissemination mechanism (Sadiku et al., 2021). An innovation in interactive website design has made it possible to disseminate information and content to the general audience without regard to geography, transportation issues, and efficiency (Sadiku et al., 2021). The utilization of a PDF that may be shared through various webpages, newsletters, and social media platforms may allow individuals to access the symptom management resource efficiently.

CONTACT

Twitter

REFERENCES

Sadiku, P. O., Ogundokun, R. O., Ogundokun, O. E., & Adebayo, A. A. (2021). Interactive website on information dissemination.

TELKOMNIKA (Telecommunication Computing Electronics and Control), 19(1), 115.

https://doi.org/10.12928/telkomnika.v19i1.15048

Statista. (2023). Internet usage worldwide - Statistics & Facts. Retrieved on January 25, 2023, from,

https://www.statista.com/topics/1145/internet-usage-worldwide/

World Economic Forum (2022). Here’s how to improve access to healthcare around the world. Retrieved on January 25, 2023, from, https://www.weforum.org/agenda/2020/01/tackling-healthcare-access-constraints/