TeleDREAMS: Promoting Research and Advocacy Among Individuals with Parkinson's Disease and their Care Partners Pubblico

Abstract

Significance: In Parkinson’s Disease (PD), research, recruitment, and enrollment are considerable obstacles. Misperceptions about research and distrust of researchers are identified as barriers to research involvement.

Objective: Expanding on the Developing a Research Participation Enhancement and Advocacy Training Program for Diverse Seniors (DREAMS), TeleDREAMS used a telehealth model to target cognition, quality of life, health literacy, research involvement, and advocacy among individuals with PD and their care partners.

Participants: Study recruited 51 individuals (M age: 67.5 ±7.6 years; PD n=32; Care partner n=19). Eight individuals (PD n= 4; Care partner n=4) did not complete at least six modules. Results from the 43 completers (PD n=28, Care Partner n=15) are presented and compared with existing data from DREAMS (n=7) collected from earlier studies.

Measures: Tests measuring cognition, health literacy, quality of life, and depression were administered at baseline and after completion. An exit survey following completion and a follow-up survey 6-9 months after completion were administered. Within group analyses were conducted in the care partner and PD groups. Between group analyses compared PD with and without a care partner and PD participants from TeleDREAMS versus in-person DREAMS.

Results: Care partners improved from baseline to post-test on global cognition (p=0.02). The PD group improved from baseline to post-test on the Tower of London (ToL) mean first move time (p=002), the ToL time per move ratio (p=0.01), and the Short Test of Functional Health Literacy in Adults (S-TOFHLA) (p=0.03). The PD participants with care partners improved significantly more from baseline on the Test of Scientific Literacy Skills (p=0.02) and the S-TOFHLA (p=0.05) than the PD participants without care partners. TeleDREAMS PD participants improved significantly more from baseline on the ToL (p=0.02) and attrition rates were lower. Most participants reported increased advocacy engagement and changed views on research.

Conclusions: A telehealth education model may help improve cognition and health literacy in participants with PD and their care partners. If increased attendance of advocacy events and the changes in beliefs on research translates to increased research involvement in the future, then the telehealth model is important for researchers looking to increase participation.

Table of Contents

INTRODUCTION...................................................................................................................................................1-7

METHODS...........................................................................................................................................................8-14

RESULTS............................................................................................................................................................15-18

DISCUSSION......................................................................................................................................................19-28

TABLES AND FIGURES.......................................................................................................................................27-44

TABLE 1: PARTICIPANT CHARACTERISTICS.....................................................................................................27-33

Table 1a.............................................................................................................................................................27-28

Table 1b.............................................................................................................................................................29-30

Table 1c.............................................................................................................................................................31-32

Table 1d..................................................................................................................................................................33

TABLE 2: OUTCOME MEASURES.......................................................................................................................33-34

Table 2a..................................................................................................................................................................34

Table 2b..................................................................................................................................................................35

TABLE 3: SATISFACTION...................................................................................................................................36-39

Table 3a.............................................................................................................................................................36-37

Table 3b.............................................................................................................................................................38-39

TABLE 4: EXIT SURVEY............................................................................................................................................40

TABLE 5: CHANGE SCORES WITH AND WITHOUT CARE PARTNERS.....................................................................41

TABLE 6: CHANGE SCORES IN-PERSON DREAMS AND TELEDREAMS..................................................................42

FIGURE 1: SIGNIFICANT OUTCOME MEASURES.....................................................................................................45

Figure 1a: Care Partner............................................................................................................................................45

Figure 1b: PD...........................................................................................................................................................45

FIGURE 2: SIGNIFICANT CHANGE SCORES.............................................................................................................46

Figure 1a: PD with and without Care Partner...........................................................................................................46

Figure 1b: PD in in-person DREAMS and TeleDREAMS............................................................................................46

REFERENCES.........................................................................................................................................................47-56

About this Honors Thesis

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School	Emory College
Department	Neuroscience and Behavioral Biology
Degree	B.S.
Submission	Honors Thesis
Language	English
Research Field	Biology, Neuroscience Health Sciences, Public Health Education
Parola chiave	Care partner Parkinson's Diseae Health Education Cognition Research Advocacy
Committee Chair / Thesis Advisor	Hackney, Madeleine, Emory University
Committee Members	Mascaro, Jennifer, Emory University Easterling, Keith, Emory University

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