14 Week Time Log

14 Week Timeline

Project Work Plan 

Individuals with YOPD will independently manage their symptoms and increase autonomy over their care through the utilization of the symptom management resource to improve functioning in meaningful tasks. 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 symptom management resource to improve their functional performance and quality of life. 

This project will include pre-post test surveys evaluating the current use of symptom management resources within the YOPD population, and the perceptions of usability for the symptom management resource developed for participants with YOPD. Additionally, a one-time survey will be provided to medical professionals to assess their perceptions of the symptom management resource, and their likelihood to provide it to their patients with YOPD. All participants with young-onset Parkinson’s disease within the study are expected to benefit from the treatments provided within the symptom management resource, and therefore, all participants involved in the study shall receive benefits. The survey will assess medical providers' likelihood to recommend the resource to their patients. All medical professionals within this study are intended to benefit from this study, as they will be provided with an educational booklet to provide their patients with YOPD upon diagnosis.

July-August 2023

A critical objective of this project is to educate healthcare providers on the clinical manifestations of Parkinson's disease and educate on the resources available to provide to patients. A resource booklet entitled Parkinson's Disease- Resources for Patients and Healthcare Providers will be produced to include over a hundred accessible resources targeted for the PD population. Additionally, an in-service entitled Parkinson's Disease in Acute and Outpatient Care will be conducted at Saratoga Hospital on July 28th, 2023, to educate local providers on the needs of the population, and how to best assist those with PD. 

Individuals with YOPD will be educated on occupational therapy interventions that can be utilized for home use to manage their symptoms through an article entitled Occupational Therapy Interventions for Young-onset Parkinson's Disease which was published by The Davis Phinney Foundation July 20, 2023. 

Students and faculty at Russell Sage College in Troy, NY will be educated on the role of occupational therapy in the management of young-onset Parkinson's disease, and the importance of advocacy efforts. 

October 2023

The results from An Exploration of the Functional Impact in Young-Onset Parkinson's Disease will be presented in poster format at the American Occupational Therapy Association Adult Rehabilitation Conference October 20th ,2023, in Baltimore, MD. As a critical objective of this project is to educate healthcare providers on the clinical manifestations of Parkinson's disease, occupational therapists nationally will be educated on the findings of this study, to better inform clinicians of the functional impact's individuals with YOPD experience secondary to their symptoms. 

The results from An Exploration of the Functional Impact in Young-Onset Parkinson's Disease will be presented via poster at the New York State Occupational Therapy Association Conference October 29th ,2023, in Albany, NY.  As a critical objective of this project is to educate healthcare providers on the clinical manifestations of Parkinson's disease, occupational therapists within New York will be educated on the findings of this study, to better inform clinicians of the functional impact's individuals with YOPD experience secondary to their symptoms. 

December 2023 

Individuals with YOPD will be educated on the benefits of occupational therapy within an interview entitled, Advocacy Through Occupational Therapy, by the Together by Sharon organization. 

The symptom management resource will be completed and provided to the institutional review board to approve for dissemination.

January 2024

Participants will initially complete a pre-survey created through SurveyMonkey, to evaluate their current experiences of symptom management, and available resources. This survey will be disseminated through Parkinson’s oriented foundations or organizations, Facebook support groups, and on a volunteer basis. Questions will include topics such as current use of online techniques, ease of finding interventions, and relevancy. 

The symptom management resource will be disseminated to individual’s with YOPD in January of 2024. The symptom management resource will be emailed to the individuals, along with the links to two surveys. This pre-survey will close at the end of January 2024.

The symptom management resource will be disseminated to medical providers in January of 2024. The symptom management resource will be emailed to the individuals, along with a link to a one-time survey. This one-time survey will close at the end of March 2024.

February 2024

Intention: A primary objective of this project is to assess the symptom management resource through stakeholder satisfaction evaluation and assess for intent for use of the symptom management resource through stakeholder evaluation. This objective will be met by recruiting participants with YOPD for disseminating the symptom management resource. A PDF of the symptom management resource will be distributed to the participants, with an associated survey to evaluate the resource in February 2024. The results from the post-test will be analyzed to determine the revisions necessary for the symptom management resource to ensure feasibility, positive attitude of the resource, and intention to use.  

Action: Following the pre-survey, YOPD participants will be asked to explore the resource document and search for their symptoms. They will view the document and the interventions provided that are relevant to them. The participants will then be asked to complete a post-survey, following exploration of the resource in January-February of 2024. The survey will include questions in regard to feasibility of the interventions in daily use, the individual’s likelihood to use for their own symptom management, and a comment section. The post survey will be closed at the end of February 2024. 

March 2024

Intention: This project will assess the intent of referral of the symptom management resource through medical provider feedback; this objective will be achieved by obtaining participants within the medical field for piloting symptom. Medical providers for stakeholder feedback will include movement disorder specialists, neurologists, primary care providers, nurse practitioners, and physician assistants. 

Action: The symptom management resource will also be piloted to medical professionals, such as movement disorder specialists, neurologists, primary care providers, physician assistants, and nurse practitioners in January 2023. The medical providers will be provided with a onetime survey, to indicate if they are likely to recommend the symptom management resource to individuals with YOPD upon diagnosis and throughout the disease course which will be closed at the end of March 2024. 

April 2024

The student investigator will implement the YOPD stakeholder and medical provider feedback into the symptom management resource; the updates will be made within the PDF of the symptom management resource to prepare for printing the PDF into a booklet format. 

The final two months of the project will consist of data analysis, and publishing of the manuscript. The student investigator will apply for Open Educational Resource status through Russell Sage College; the open access resource will allow individuals to obtain the symptom management resource freely, create discipline specific changes, and translate into various languages. At the completion of this project, the findings will be published within the Journal of Parkinson's Disease.