Objective: To develop and evaluate impact of a Digital Resource Library (DRL) to address unmet needs for disease state education of People with PD (PwP) and their caregivers.

Background: Rurality, poverty, limited access and health literacy challenge rural Americans’ understanding of their neurological disease, and navigating stigma associated with these[1]. Consequent limitations to self-efficacy in managing PD may explain higher hospital admissions and readmissions (7th and 5th in US, respectively) for PwP in Arkansas[2], and increased risk and economic burden experienced[3,4]. Digital support interventions can improve chronic disease self-management[5,6]. We aimed to (i) examine unmet needs of PwP in Arkansas, (ii) develop a DRL for PD education and compiling resources for PD for these needs, and (iii) determine the impact of DRL on self-efficacy for PwP in Arkansas.

Method: After incorporating input from a needs assessment[7], a DRL (available at https://redcap.link/PDSurvey; Figure1) was developed and deployed in late April, 2022. Subjects provided demographic and PD details, and baseline PROMIS ® self-efficacy measures for chronic disease in 6 domains. DRL was accessed as short video modules organized into 7 chapters (29 modules in all), with embedded resource links for vetted topic-specific resources. Between 08/22 and 11/22, monthly reminder emails were sent to encourage completion.

Results: Among 84 PwP participants enrolled, 26 PwP completed all DRL modules and post-use self-efficacy [completers]. Compared to non-completers, PwP completers had similar demographics and PD characteristics (Table1), but scored higher on some baseline measures of self-efficacy (composite measures; managing daily activities; managing emotions). For PwP completers, DRL use was associated with significantly higher post-use self-efficacy scores for all domains of self-efficacy except managing medications and treatment (Figure 2a and 2b).

Conclusion: Digital interventions based on their needs and literacy level can improve self-efficacy for managing chronic disease in PwP. Lower scores on baseline self-efficacy measures may predict a lower rate of engagement with and completing digital interventions among PwP.

Research reported in this publication was supported by NCATS of the NIH (award number UL1 TR003107). Content is sole responsibility of authors and does not represent views of the NIH.

References: 1. Elliot VL, Morgan D, Kosteniuk J, Froehlich Chow A, Bayly M. Health-related stigma of noncommunicable neurological disease in rural adult populations: A scoping review. Health Soc Care Community. 2019;27(4):e158-e188. doi:10.1111/hsc.12694
2. Mantri, S., Fullard, M.E., Beck, J., & Willis, A.Q. (2018). State-level prevalence, health service use, and spending vary widely among Medicare beneficiaris with Parkinson disease. Parkinson’s Disease, 5, 1-5.
3. Keranen, T., Kaakkola, S., Sotaneimi, K., Laulumaa, V., Haapaniemi, T., …, Takala, A. (2003). Economic burden and quality of life impairment increase with severity of PD. Parkinsonism and Related Disorders, 9, 163-168.
4. Ray Chaudhuri, K., & Titova, N. (2019). Societal burden and persisting unmet needs of Parkinson’s Disease. Parkinson’s Disease. DOI: https://doi.org/10.17925/ENR.2019.14.1.28
5. Lorig K, Ritter PL, Turner RM, English K, Laurent DD, Greenberg J, Benefits of Diabetes Self-Management for Health Plan Members: A 6-Month Translation Study. J Med Internet Res, 2016;18(6):e164. doi: 10.2196/jmir.5568, PMID: 27342265, PMCID: 4950850
6. Morton K, Dennison L, May C, Murray E, Little P, McManus RJ, Yardley L. Using digital interventions for self-management of chronic physical health conditions: A meta-ethnography review of published studies. Patient Educ Couns. 2017 Apr;100(4):616-635. doi: 10.1016/j.pec.2016.10.019. Epub 2016 Oct 20. PMID: 28029572; PMCID: PMC5380218.
7. Moore, J., & Parveen, S.. Perception of symptoms, current needs, and barriers of service delivery for individuals with Parkinson disease and their families. Submitted for consideration at the Annual Convention of American Speech-Language-Hearing Association 2021, Nov 18-20, 2021.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/development-and-evaluation-of-a-digital-resource-library-for-arkansans-with-parkinson-disease-and-their-caregivers/