Goals and Objectives

Doctoral Capstone Experience and Project Individualized Outcomes and Objectives 

Developing and Evaluating a Symptom Management Resource for 

Young-onset Parkinson’s Disease 

1. Goal- Develop a symptom management resource containing comprehensive occupational therapy strategies to increase knowledge and autonomy for managing symptoms of young-onset Parkinson’s disease by the end of the 14-week capstone experience. 

1.1 Objective- Disseminate Symptom Management Resource to provide individuals and families access to occupation-based strategies for symptom management by week 4. 

1.1.1 Outcome- Increase knowledge of symptom-management techniques for individuals with YOPD, their families, and medical professionals. 

1.1.2 Outcome- Increase knowledge of occupational therapy services for individuals with YOPD and their families. 

1.1.3 Outcome- Promote utilization of occupation-based strategies for individuals with YOPD who utilize the symptom management resource. 

1.2 Objective- Disseminate Symptom Management Resource to medical providers to provide patient resources following diagnosis by week 4. 

1.2.1 Outcome- Increase knowledge of symptom management strategies for medical professionals' reference and to recommend to patients with young-onset Parkinson’s disease by week 14. 

1.2.2 Outcome- Increase knowledge of occupational therapy services for medical professionals to optimize referrals. 

1.3 Objective- Pilot symptom management resource to assess for intent of use of resource to groups of individuals with young-onset Parkinson’s disease and medical professionals by week 7.

1.3.1 Outcome- Determine the Symptom Management Resource to be a feasible resource for individuals with YOPD. 

1.3.2 Outcome- The Symptom Management Resource will be population centered, to ensure the usability and relevance of the resource to the YOPD population. 

1.3.3 Outcome- Individuals with YOPD will increase knowledge of resources and strategies for self-managing their symptoms. 

1.3.4 Outcome- The YOPD population will have access to a user friendly, self-guided Symptom Management Resource to independently manage symptoms. 

1.4 Objective- Analyze feedback to determine the benefits of the Symptom Management Resource by medical professionals, and perceptions from individuals with YOPD by week 9. 

1.4.1 Outcome- Determine the Symptom Management Resource to be a feasible resource for individuals with YOPD. 

1.4.2 Outcome- Individuals with YOPD will utilize the interventions 

provided in the symptom management resource within their daily routines. 

2. Goal- Develop a Symptom Management Resource Expanded containing comprehensive occupational therapy interventions to guide intervention planning for occupational therapists treating individuals with young-onset Parkinson’s disease. 

2.1 Objective- Provide symptom management strategies using evidenced-based interventions for occupational therapists reference for patients with young-onset Parkinson’s disease by week 14. 

2.1.1 Outcome- Increase knowledge of interventions for occupational therapists treating nuanced symptoms in young-onset Parkinson’s disease population to ensure best practice and positive outcomes. 

3. Goal- Develop Parkinson's Disease Resources for Patients and Healthcare Providers Booklet to promote efficient access to resources for allied health professionals, and patients with YOPD by week 4.

3.1 Objective- Increase accessibility to resources for individuals with YOPD and their families for promoting social, emotional, mental, and physical health. 

3.1.1 Outcome- Increase accessibility to resources for clinicians to provide to patients with YOPD to optimize health outcomes. 

4. Goal- Develop Parkinson's Disease in Acute and Outpatient Care In-service presentation to educate allied health professionals on needs associated with young-onset Parkinson’s disease by week 6. 

4.1 Objective- Educate allied health professionals on nuances of symptoms within acute care for individuals with young-onset Parkinson’s disease by week 6. 

4.1.1 Outcome- Optimize safety, wellness, and health for individuals with YOPD within hospital or acute rehabilitation environments. 

5. Goal- Educate individuals and families with YOPD on the options for Occupational Therapy through broadcasted interviews, to increase awareness of healthcare resources and promote wellbeing by week 3. 

5.1 Objective- Disseminate Occupational Therapy Interventions for Young-onset Parkinson’s disease (Article published with Davis Phinney Foundation) to YOPD audience. 

5.1.1 Outcome- Increase knowledge of symptom-management techniques for individuals with YOPD, and their families. 

5.1.2 Outcome- The YOPD population will experience an increased sense of autonomy over their care as they control the information they receive and when. 

5.2 Objective- Educate individuals and families with YOPD on the options for Occupational Therapy to promote wellbeing through interviews with Spectrum News by week 3. 

5.2.1 Outcome- Increase referral seeking for occupational therapy services by individuals with YOPD to promote health and wellbeing. 

5.3 Objective- Educate individuals and families with YOPD on the options for Occupational Therapy to promote wellbeing through interviews with Together for Sharon by week 2. 

5.3.1 Outcome- Increase referral seeking for occupational therapy services by individuals with YOPD to promote health and wellbeing.

6. Goal- Develop Parkinson's Disease Educational booklet to educate newly diagnosed individuals on critical information on young-onset Parkinson’s disease by week 12. 

6.1 Objective- Educate individuals and families with YOPD on nuances of symptoms  for individuals with young-onset Parkinson’s disease by week 6. 

6.1.1 Outcome- Optimize safety, wellness, and health for individuals with YOPD within hospital, community, and home environments. 

Young-onset Parkinson’s Disease is characterized as being diagnosed prior to age 50 and affects up to 20% of all Parkinson’s disease cases (Barros, 2017). Approximately 6,000 to 12,000 new cases of young-onset Parkinson’s disease are diagnosed yearly in the United States (Barros, 2017). 

Individuals with young-onset Parkinson's disease typically experience both motor, and non-motor symptoms. Motor symptoms typically include bradykinesia, akinesia, resting tremor, and postural instability negatively impact functioning, and quality of life (Foster et al., 2014; Silva et al., 2017). Individuals with young-onset Parkinson's disease (YOPD) also frequently suffer non-motor symptoms such as cognitive decline, depression, anxiety, and impulse control disorders, sleep, autonomic changes, sensory disturbances, visual dysfunction and pain as their initial signs and symptoms (Barros, 2017; Foster, et al., 2014). Although non-motor symptoms are becoming more important in the treatment of Parkinson's disease, little is known about how they develop and how they affect people's quality of life (Antonini et al., 2012).

Current literature suggests the existence of non-motor symptoms in young-onset Parkinson’s disease impacts the individuals’ roles, daily functioning, and quality of life. Despite the prevalence of research on Parkinson's disease and cognition, there is significantly less research on cognitive abnormalities in those with YOPD (Aarsland et. al., 2009). Approximately 60-80% of persons with Parkinson's disease have cognitive impairment (Orgeta et al., 2020). 

This knowledge indicates a need to further research on cognitive changes in YOPD. To treat people with YOPD successfully, there must be investigation of non-motor symptoms and quality of life. The purpose of this study will be to explore the impact of both motor, and non-motor symptoms on quality of life for individuals with young-onset Parkinson’s disease. The central problem is that individuals with YOPD experience symptoms that impact their daily functioning, and consequently their quality of life. I intend to address this problem through the provision of a symptom-management resource for individuals with YOPD to manage their symptoms and increase autonomy over their care.  

Logic model

Inputs

• PD Avengers

• Davis Phinney Foundation

• American Parkinson's Disease Association

• Parkinson's Europe

• PMD Alliance

• Russell Sage College

• Kristi LaMonica

• Becky Bernhardt

• Deb Collette 

• Dayna Maniccia

• An Exploration of Functional Impact of Young-onset Parkinson's disease needs assessment. 

Aarsland, D., Brønnick, K., Larsen, J. P., Tysnes, O. B., Alves, G., & Norwegian ParkWest Study Group (2009). Cognitive impairment in incident, untreated Parkinson disease: the Norwegian ParkWest study. Neurology, 72(13), 1121–1126.

Antonini, A., Barone, P., Marconi, R., et al. (2012). The progression of non-motor symptoms in Parkinson’s disease and their contribution to motor disability and quality of life. Journal of Neurology, 259, 2621–2631 (2012). https://doi.org/10.1007/s00415-012-6557-8

Barros, A., (2017). Early onset Parkinson’s disease. Parkinson’s News Today. Retrieved September 21, 2022, from   https://parkinsonsnewstoday.com/early-onset-parkinsons-disease/.

Foster, E.R., Bedekar, M., Tickle-Degnen, L., (2014). Systematic review of the effectiveness of occupational therapy–related interventions for people with Parkinson’s disease. American Journal of Occupational Therapy January/February 2014, Vol. 68(1), 39–49. doi: https://doi.org/10.5014/ajot.2014.008706

Orgeta,V., McDonald, K.R., Poliakoff, E., Hindle, J.V., Clare, L., Leroi, I., (2020) Cognitive training interventions for dementia and mild cognitive impairment in Parkinson’s disease. Cochrane Database of Systematic Reviews, Issue 2. Art. No.: CD011961. DOI: 10.1002/14651858.CD011961.pub2

Silva, V. F., Simoes, K. M., Freire, I. D. A., Cardenas, R. N., Gongalvez, L. G. O., Borges, C. J., Militao, A. G., & Valentim-Silva, J. R. (2017). Quality of life, cognitive impairment, treatment, and physical exercise in patients with Parkinson's disease: A review. Journal of Exercise Physiology Online, 20(5), 98+. https://link.gale.com/apps/doc/A532085045/AONE?u=nysl_ca_sagecoll&sid=bookmark-AONE&xid=54d30916