Objective: To define patients’ needs and enhance educational and quality improvement initiatives at our center.

Background: Patient-centered care is critical for the managing the symptoms and healthcare goals of patients with Parkinson’s Disease (PD). Addressing educational gaps and patient and family needs are one of the important practices of patient–centered care. To improve upon the quality of patient centered care at our movement disorders center, we aimed to identify what our patients’ educational gaps and health care needs (HCN) are.

Method: A one-page questionnaire was completed by the patient before their clinical appointment and shared with the provider. The questionnaire included 15 options related to symptom management (sleep, speech, and swallowing, cognition), psychosocial needs (coping needs, mood and mental health, exercise classes, support groups, transportation, food resources, advance care planning), DBS and medication management, genetic testing and research, and hired personal care services (long term care, in-home care). Descriptive statistics (N, mean, standard deviation, range, percentages) were used to describe patient requested needs and education. We utilized the NC Department of Commerce’s Tier Designation to learn more about the socioeconomic background of our patient cohort.

Results: 194 questionnaires were completed from patients who reside in North Carolina (53% male and 46% female, mean age 69±13, 85% White, 71% resided in tier 3 counties, while 17.5% in tier 1 counties). The normalized data of HCN by category showed that overall symptom management (31%) was requested the most, followed by DBS/medication management (18%), and psychosocial needs (17%). We found the highest HCN item marked by participants was “coping with diagnosis” followed by “sleep” and “speech”. Most chosen HCN for males was symptom management whereas females – psychosocial needs, however, the data did not reach statistical significance based on age, gender or county.

Conclusion: Our findings showed that coping with the PD diagnosis remains the most common need among our Center patients. There was no significant difference in HCN choice based on age, gender, or county. Overall, the most requested needs were related to symptom and medication management closely followed by psychosocial needs. These findings will inform outreach programming and specific interventions related to patient-centered care at UNC-Chapel Hill.

References: [1] Armistead-Jehle, P., Cifu, D.X., Wetzel, R., Carne, W. and Klanchar, L.A. (2010), Health Literacy Among Patients Diagnosed With Movement Disorders: A Pilot Study. PM&R, 2: 43-47. https://doi-org.libproxy.lib.unc.edu/10.1016/j.pmrj.2009.05.008

[2] Bloem, B. R., Henderson, E. J., Dorsey, E. R., Okun, M. S., Okubadejo, N., Chan, P., . . . Munneke, M. (2020). Integrated and patient-centred management of parkinson’s disease: A network model for reshaping chronic neurological care. The Lancet Neurology, 19(7), 623-634. doi:https://doi.org/10.1016/S1474-4422(20)30064-8

[3] Haahr, A., Groos, H., & Sørensen, D. (2021). ‘Striving for normality’ when coping with parkinson’s disease in everyday life: A metasynthesis. International Journal of Nursing Studies, 118, 1. doi:https://doi.org/10.1016/j.ijnurstu.2021.103923

[4] Navarta-Sánchez, MV, Caparrós, N, Riverol Fernández, M, Díaz De Cerio Ayesa, S, Ursúa Sesma, ME, Portillo, MC. Core elements to understand and improve coping with Parkinson’s disease in patients and family carers: A focus group study. J Adv Nurs. 2017; 73: 2609– 2621. https://doi-org.libproxy.lib.unc.edu/10.1111/jan.1333

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MDS Abstracts - https://www.mdsabstracts.org/abstract/addressing-patient-needs-enhancing-patient-centered-care-at-the-movement-disorders-center/