Remote and In-Person Research Education for People With Parkinson’s Disease and Their Care Partners

Abstract

Objective:

TeleDREAMS, a distance learning version of the Developing a Research Participation Enhancement and Advocacy Training Program for Diverse Seniors (DREAMS) program, provides remote clinical research process and advocacy education to older adults with Parkinson’s disease (PD) and their care partners.

Method:

Participants engaged in remote learning, reading eight weekly clinical research process and advocacy education modules. They also had weekly half hour phone discussions with staff about each module. Participants (PD: n = 28, care partner: n = 15) were tested on health literacy, quality of life, depression, research involvement, and advocacy measures.

Results:

People with PD improved on health literacy postintervention. PD participants who participated with care partners improved more on health literacy than those without care partners. PD participants’ attrition rates were lower for PD participants in TeleDREAMS than those of the similar, in-person program DREAMS program studied before TeleDREAMS. Most participants reported research involvement and patient advocacy for older adults with PD 6 to 9 months postprogram.

Conclusions:

TeleDREAMS may improve health literacy in participants with Parkinson’s and their care partners. If increased advocacy and health and research literacy translates to increased research involvement, then TeleDREAMS could be an important strategy for researchers interested in increasing participation.

Parkinson’s and Research Participation, Attitudes, and Advocacy

In 2011, 26% of terminated clinical trials ended because of failure to reach recruitment targets (Carlisle et al., 2015). Adequate samples are crucial for statistical power and delayed recruitment can be costly (Johnson, 2015; Torgerson et al., 2001). Failed enrollment has clear negative scientific and economic implications. One problem with developing effective interventions for incurable Parkinson’s disease (PD), the second most common progressive, neurodegenerative disorder, is lack of participation in clinical research. Recruitment, enrollment, and participation in clinical trials face considerable obstacles (Berk et al., 2017; Valadas et al., 2011), due to fear of potential adverse consequences, worry regarding interruptions of medical regimens, and/or concern about placebo use (Mathur et al., 2015). However, people with knowledge about clinical processes and who value clinical trials are more willing to participate in clinical trials (Ohmann & Deimling, 2004). Fortunately, barriers to research participation may be lessened through educating stakeholders about research involvement to facilitate understanding between those conducting trials and their participants (Mathur et al., 2015).

Barriers to Research Participation: Health Literacy, Cognition, and Mood

Inadequate health literacy, impaired cognition, and poor mood may impede research participation. Adequate health literacy is necessary for potential research participants to understand the clinical research process (Evans et al., 2012). Individuals with low health literacy have significantly more difficulty identifying clinical trials for which they are eligible than those with greater health literacy (Utami et al., 2014). Depressive disorders and dementia are common nonmotor related complications for people with PD (Hely et al., 2008; Schrag & Taddei, 2017). Researchers must also ensure consent processes are fair and valid for individuals with cognitive challenge (Leopore et al., 2017). Individuals with depression are often excluded because researchers hesitate to enroll them (Mason et al., 2007). Interventions that target health literacy and accommodate difficulties with mood and impaired cognition may increase research participation in populations with intractable conditions like PD.

Care Partners of People With PD

Many informal caregivers who provide emotional and physical support assist individuals with PD. Involving care partners in research for people with PD may enhance health benefits and quality of life (QOL) in both care recipients and care partners. Older adults with a close confidant, for example, a care partner, experience fewer adverse health outcomes than those without support (Dickens et al., 2004). After 1 week, depressed PD patients who had a care partner present at an informed consent session had better recall of informed consent than participants without a care partner (Teng et al., 2012). Some researchers have identified care partners as “gatekeepers” with ability to prevent or encourage a patient to become involved in research (Waite, Poland, & Charlesworth, 2019).

Care partner perspectives are very relevant to meet the needs of both the care partner and the individual with PD or other condition (Aoun et al., 2017). Caregivers of individuals with Alzheimer’s disease (AD) reported that anxiety about procedures, skepticism toward the research process, and negative attitudes toward medical treatment stopped them from allowing their care recipients to participate in research (Connell et al., 2001). The barriers also impact various practical matters, for example, accomplishing study visits.

Providing support for individuals with PD can be demanding and affect the mental health of the care partners (Thommessen et al., 2002). Compared with the general population of adults of similar age, PD care partners experience more mood disorders and worse QOL (Rajiah et al., 2017). An educational solution could serve to increase research participation of both the care partner and care recipient. Prior research shows a PD and care partner specific educational intervention benefited participant mood following each session. This program focused on psychosocial issues related to PD. Most participants indicated that the 8-week program with 90-min in-person sessions provided useful content (Simons et al., 2006). A model of educational solutions that bring people with PD and care partners together may be successful for middling research participation. A research education program that explains the intricacies and importance of the research process, may improve care partner willingness to permit and assist their caree to participate in research.

Potential Health Education Solutions

Researchers have evaluated other educational programs for benefits in PD and other populations. The Patient Education Program Parkinson showed a trend toward increased QOL (A’Campo et al., 2010). The Consent Administrator Research Education Program focused on training researchers during the informed consent process to combat negative beliefs and attitudes of participants about health care and increase support throughout the research process (Larson et al., 2009). However, this intervention focused on training researchers on proper administration of information rather than attempting to promote research and advocacy in a population with a neurodegenerative condition.

Researchers evaluated another program designed to promote research and advocacy in PD in participants with PD but not with their care partners. A two-part, in-person education program was developed in 2015 for older adults, Developing a Research Participation Enhancement and Advocacy Training Program for Diverse Seniors (DREAMS), and included several participants with PD. The DREAMS program goals were to build trust between researchers and older adults and to increase opportunities for older adults to participate in and collaborate in research (Hackney et al., 2022). The first part of DREAMS was an 8-week in-person health seminar about local aging research, with 90-min sessions offered weekly. Part 2 was an 8-week training course about the clinical research process and advocacy for distinct patient groups. Participants in both Parts 1 and 2 reported improved attitudes toward research participation, high satisfaction ratings, decreased depression, and evidence of research involvement 6–9 months after the program (Dillard et al., 2018).

By increasing accessibility of Part 2 of DREAMS, more underrepresented groups can benefit from the clinical research process training. Using telehealth methods can increase accessibility. Telerehabilitation receives similar satisfaction ratings to in-person care, offers benefits for those with chronic disease, and often is more convenient for participants (Inglis et al., 2017; Johnston et al., 2000). Remote modes of educational delivery may be especially relevant during pandemics necessitating social distancing. In this study, we evaluated a remote expansion of DREAMS Part 2 called TeleDREAMS, using a distance learning model (created before the COVID-19 pandemic). Participants were diverse individuals with PD and their care partners. All participants read eight modules and were assessed for health literacy, quality of life, and research activities before and after the intervention. We also investigated whether a PD participant benefited from enrolling with versus without a care partner; and compared legacy data from the original in-person DREAMS program with TeleDREAMS data to examine the effects of in-person versus tele-delivery of the DREAMS research and advocacy curriculum.

Hypotheses

The hypotheses of this study were as follows: TeleDREAMS would be acceptable and satisfying for all participants, care partners would benefit as well as people with PD. The TeleDREAMS would have similar effects as DREAMS programs on measures of health literacy and mood, although attrition should be lower in TeleDREAMS because of increased accessibility. All participants would report having engaged in advocacy and research and educational events 6–9 months after participation and would have presented information about the research process to their peers. We expect that people with PD who are enrolled with a care partner would fare better and improve more than people with PD enrolled without a care partner.

Methods

The Emory University Institutional Review Board reviewed and approved this protocol. All participants provided informed consent before participating.

Participants

The team recruited participants at Parkinson’s community events, local churches, and within Emory’s Center for Health in Aging’s community outreach programs. Fifty-one participants with either PD (n = 32) or care partners of people with PD (n = 19) enrolled. A board-certified movement disorders neurologist had provided eligible PD participants with a PD diagnosis sometime prior to the study. All PD participants came with diagnoses of idiopathic “definite” PD and had PD one or more years prior to study participation. All participants therefore had met the following criteria at the time of their diagnosis: unilateral onset, exhibiting three of the four cardinal signs of PD (rigidity, tremor, bradykinesia, and postural instability), and response to antiparkinsonian medication. They did not have familial or young onset PD, and were older than 40 at the time of their diagnosis. To be included, all PD participants had to have no other major neurological disorders. For care partners, the inclusion criterion was familial or friendly relationships with a person with PD. Further, care partners had to report they provided “regular” and “ongoing” care of a person with PD, given their roles as spouse, or emotional partner for someone with PD. Paid care partners were ineligible for the study. The amount of care required by different study participants with PD depended on their level of independence. Some care partners were responsible for providing more support for activities of daily living (ADLs) than others. All participants were able to speak, read, and understand English. Transportation was provided for individuals who did not have transportation, to attend the in-person assessments. Forty-three participants completed at least six modules of the TeleDREAMS program.

TeleDREAMS Program

TeleDREAMS designers intended to use a tele-health model to provide research education to individuals with PD and their care partners to promote research and advocacy within their communities. A team of faculty, graduate, and undergraduate research assistants designed the TeleDREAMS binder, eight clinical research process and advocacy modules, which was reviewed by multiple investigators and stakeholder and community advisors. Past DREAMS research participants who served as patient stakeholder advisers for the study provided inputs on drafts of the binder. The team adapted the binder material from lectures created and presented by several university faculty and community experts for the in-person DREAMS program (Hart et al., 2017). The team tested the binder reading level with an online readability checker to ensure that the writing was at an eighth grade level or below. The TeleDREAMS binder lessons, which were identical topics as the DREAMS modules included Week 1: Introduction to Research Advocacy; Week 2: Parkinson Disease Clinical Research in the Pipeline; Week 3: Ethics and Research; Week 4: Analysis and Evaluation of Clinical Research; Week 5: Aging and Clinical Research; Week 6: Understanding Informed Consent and Health Literacy; Week 7: Effective Advocacy in the Clinical Research Process; Week 8: Engaging Diverse Communities in Research and Getting Started as a Research Advocate. All care partners and people with PD consumed the same educational materials. The subtopics for each module are included in an Appendix. Briefly, the subtopics were related to definitions of key terms and concepts, the importance of these concepts, why people with PD and their caregivers should get involved, benefits and advantages of involvement in research, details related to the clinical research process, the ethics of research as pertaining to aging, basics of statistics, and the importance of diversity in research, and ways to get involved (Table A1).

The team asked participants to read each weekly lesson. Staff scheduled and called participants for a half hour phone conversation weekly to discuss the lesson. During calls, staff helped the participant recall the lecture with prompts and used planned questions, listed below. The designers of TeleDREAMS intended the calls to facilitate knowledge retention through deeper introspection and questioning of materials.

Weekly Call Questions

1. Have you read the weekly lesson?

2. Did you look at any of the supplemental materials?

3. What did you learn?

4. Did anything stick out as particularly interesting or new information?

5. What did you know about this topic before reading the lesson?

6. Did you learn anything you can use in your own life?

7. Is there anything else we should add to this week’s module?

8. Any other comments?

Measures

Cognitive assessments were administered before the intervention. Health literacy assessments and psychosocial surveys were administered in-person both before and after the intervention. Participants filled out some psychosocial surveys (depression, QOL) at home prior to assessment. Staff reviewed these surveys at the in-person assessment for missing items and clarified any questions about the surveys. The in-person assessments lasted about two hours Staff administered the following measures:

Cognition

Staff administered two cognitive measures to characterize the baseline cognitive status of participants: the Montreal Cognitive Assessment (MoCA), which assesses global cognition (Nasreddine et al., 2005) and the Tower of London (ToL), which assesses organization and planning, and is considered a valid test of executive function (Rainville et al., 2012).

Health Literacy

The Rapid Estimate of Adult Literacy in Medicine (REALM) investigates health literacy problems in patients (Bass et al., 2003). The Short Test of Functional Health Literacy for Adults (S-TOFHLA) evaluates ability to process health-related information (Baker et al., 1999). Research literacy was measured through the test of Scientific Literacy Skills (TOSLS; Gormally et al., 2012). The Advocate Literacy test gauged knowledge about the eight different module topics at baseline and after the course.

Depression

The Beck Depression Inventory (BDI) measures the behavioral manifestation of depression (Beck et al., 1961).

Quality of Life

The Short-Form 12 (SF-12) evaluates the mental and physical aspects of QOL through physical and mental composite scores (PCS and MCS).

Project Satisfaction

An exit survey with statements rated on a 5-point Likert scale (1 = strongly disagree to 5 = strongly agree) assessed participant satisfaction.

Research Participation 6–9 Months After TeleDREAMS

To evaluate the long-term impact and products of the program, 6–9 months following research participation and completions of TeleDREAMS, staff called participants and queried them about their postintervention research and advocacy activities. Nine individuals were lost to follow-up at 6–9 months post-TeleDREAMS.

Follow-up survey questions included:

1. Have you participated in any studies since you finished the TeleDREAMS study? How many?

2. Have you engaged in any advocacy events? How many?

3. Have you attended any research or educational seminars? How many?

4. Have you given any presentations to your peers or others about topics related to research or Parkinson’s? Please describe.

5. Did participating in the TeleDREAMS program change the way you thought about clinical research or researchers in general?

6. Do you have other comments or anything else you would like to share?

Data Analyses

Outcome data collected from the original DREAMS program (described above) were used for comparison with outcome measures from TeleDREAMS participants in this study. Descriptive statistics were calculated for the PD and care partner groups, participants who withdrew from the program (noncompleters), PD participants with and without care partners, and PD participants in TeleDREAMS. Existing legacy data from DREAMS (previously described in Hart et al., 2017) were used to compare in-person versus tele-delivery of DREAMS. These descriptive statistics were compared using Fisher’s exact tests for categorical variables and independent t-tests for continuous variables. Using paired t-tests and Cohen’s d for effect size, TeleDREAMS PD and care partner groups performance at pre and post were compared within groups on health literacy, and psychosocial measures. Ratings in the exit survey were evaluated for the PD group, the care partner group, and were compared between TeleDREAMS and legacy DREAMS groups using Fisher’s exact test. The change scores between pre and post evaluations on the outcome measures were calculated for the PD participants with and without a care partner and for PD participants in TeleDREAMS and DREAMS. Independent t-tests were used to assess differences in change scores between PD participants with and without a care partner and between those enrolled in TeleDREAMS and DREAMS. Cohen’s d effect sizes were calculated. Linear regressions adjusting for the variable of marital status were also used to assess differences between TeleDREAMS and DREAMS. The last observation carried forward (LOCF) method was used for ten individuals who completed the program but did not complete all measures of the posttest. The a level was set at .05 and per Cohen’s conventions, .2 was small, .5 was moderate, and .8 was large for effect sizes (Cohen, 1988). All analyses were carried out using R software(Version 1.2.1335).

Results

Participant Characteristics

TeleDREAMS Participants: Care Partners and PD

Fifty-one people (M age: 67.5 ± 7.6 years; PD: n = 32; care partner: n = 19) were recruited for the study. Eight “noncompleters” (PD: n = 4; care partner: n = 4) did not complete at least six modules. Baseline characteristics are outlined in Table 1. Forty-three individuals completed six or more modules over the eight weeks, for a rate of 15.7% attrition.

Table 1.

Characteristics of Participants With Parkinson’s, Care Partners, All Individuals Who Withdrew (Noncompleters) From TeleDREAMS, and All Completers of TeleDREAMS

Factors	Entire sample M (SD)/N (%)	Parkinson’s disease M (SD)/N (%)	Care partner M (SD)/N (%)	p	Noncompleters M (SD)/N (%)	Completers M (SD/N (%)	p
Sexa	N = 51	N = 32	N = 19		N = 8	N = 43
Female	23 (45.1%)	10 (31.3%)	13 (68.4%)	0.004*	3 (37.5%)	20 (46.5%)	0.72
Male	28 (54.9%)	22 (68.8%)	6 (31.6%)		5 (62.5%)	23 (53.5%)
Age (years)b	N = 51	N = 32	N = 19	0.51	N = 8	N = 43	0.03^
	67.5 (7.6)	68.1 (8.3)	66.7 (6.4)		72.1 (5.4)	66.7 (7.7%)
Racea	N = 51	N = 32	N = 19		N = 8	N = 43	1
Black or African American	11 (21.6%)	7 (21.9%)	4 (21.1%)		2 (25.0%)	9 (20.9%)
Asian	3 (5.9%)	1 (3.1%)	2 (10.5%)	0.34	0 (0%)	3 (7.0%)
Hispanic or Latino	2 (3.9%)	1 (3.1%)	1 (5.3%)		0 (0%)	2 (4.7%)
White	35 (68.6%)	23 (71.9%)	12 (63.2%)		6 (75.0%)	29 (67.4%)
Education (years)b	N = 49	N = 32	N = 17	0.48	N = 7	N = 42	0.96
	16.2 (2.5)	16.1 (2.64)	16.6 (1.8)		16.9 (2.3)	16.1 (2.6)
Employeda	N = 50	N = 32	N = 18	0.26	N = 8	N = 42
	10 (20.0%)	5 (15.6%)	5 (25.8%)		1 (14.3%)	8 (18.6%)	0.30
Marital statusa	N = 51	N = 32	N = 19		N = 8	N = 43	0.15
Single	3 (5.9%)	3 (9.4%)	0 (0%)		0 (0%)	3 (6.8%)
Married/Partnered	40 (78.4%)	22 (68.8%)	17 (94.4%)	0.38	6 (75%)	34 (77.3%)
Divorced	5 (9.8%)	4 (12.5%)	1 (5.6%)		0 (0%)	5 (11.4%)
Widowed	3 (5.9%)	3 (9.4%)	0 (0%)		2 (25.0%)	1 (2.3%)
Housinga	N = 51	N = 32	N = 19		N = 8	N = 43	1
House/apartment/condominium	49 (96.1%)	31 (96.9%)	18 (94.7%)	1	8 (100%)	41 (95.3%)
Senior Housing (independent)	2 (3.9%)	1 (3.1%)	1 (5.3%)		0 (0%)	2 (4.7%)
Number of falls in the past 6 monthsb	N = 51	N = 32	N = 19	0.12	N = 8	N = 43	0.16
	5.9 (26.3)	9.3 (32.9)	0.1 (0.2)		0.6 (1.2)	6.8 (28.6)
Participant type					N = 8	N = 43	0.45
Parkinson’s					4 (50.0%)	15 (34.9%)
Care partner					4 (50.0%)	28 (65.1%)
Assistive device use when walkinga	N = 51	N = 32	N = 19		N = 7	N = 43	1
Yes	15 (30.0%)	15 (46.9%)	0 (0%)	0.007*	2 (28.6%)	13 (30.2%)
No	35 (70.0%)	17 (53.1%)	18 (100%)		5 (28.6%)	30 (69.8%)
Hearing aid usea	N = 50	N = 32	N = 18		N = 7	N = 43	0.07
Yes	8 (16.0%)	5 (15.6%)	3 (16.7%)	1	3 (42.9%)	5 (11.6%)
No	42 (84.0%)	27 (84.4%)	15 (83.3%)		4 (57.1%)	38 (88.4%)
Body mass index (kg/m2)b	N = 51	N = 32	N = 19	0.25
	27.3 (6.2)	26.4 (5.8)	28.6 (6.8)
Number of comorbiditiesb	N = 50	N = 30	N = 19	0.002*	N = 6	N = 43	0.75
	2.9 (2.1)	3.8 (2.4)	1.9 (1.2)		2.5 (1.6)	2.7 (1.8)

^aCategorical data and use N (%).

^bcontinuous data and uses M(SD).

^*Pvalues indicate significant differences between Parkinson’s and Care Partner Groups at the 0.05 level

^{^}Pvalues indicate significant differences between the group of participants that did not complete the TeleDREAMS program and the group of participants that completed at least six sessions of the program at the 0.05 level

TeleDREAMS Completers Versus Noncompleters

The eight noncompleters were significantly older than the rest of the sample (completers; see Table 1). Reasons given for withdrawal included: (a) not seeing the value in the program; (b) health reasons (n = 2); (c) too busy; (d) perception that the reading requirement was too much; (e) being “just not up for it”; (f) stopped answering calls (n = 2).

PD Participants Enrolled With Care Partners Versus Those Enrolled Without

Participants with PD who were enrolled with a care partner (n = 14) were significantly more likely to be married than participants enrolled without a care partner (n = 14); all other characteristics were similar between participants with PD enrolled with and without a care partner (see Table 2).

Table 2.

Characteristics of Participants With Parkinson’s Enrolled With Care Partner Versus Those Enrolled Without a Care Partner and Characteristics of Participants With Parkinson’s in TeleDREAMS Versus In-Person DREAMS

Factors	Parkinson’s with care partner (n = 14) M (SD)/N (%)	Parkinson’s without care partner (n = 14) M (SD/N (%)	p	TeleDREAMS (n = 28) M (SD)/N (%)	In-person DREAMS team (n = 7) M (SD)/N (%)	p
Sexa			0.21			0.66
Female	2 (14.3%)	6 (42.9%)		8 (28.6%)	4 (57.1%)
Male	12 (85.7%)	8 (57.1%)		20 (71.4%)	3 (42.9%)
Age (years)b	65.5 (6.8)	69.2 (9.9)	0.26	67.4 (8.5)	68.1 (5.0)	0.76
Racea			0.47			0.17
Black or African American	3 (21.4%)	2 (14.3%)		5 (17.9%)	1 (57.1%)
Asian	1 (7.1%)	0 (0%)		1 (3.6%)	0 (0%)
Hispanic or Latino	1 (7.1%)	0 (0%)		1 (3.6%)	0 (0%)
White	9 (64.3%)	12 (85.7%)		22 (75.0%)	3 (42.9%)
Education (years)b	15.7 (3.6)	16.1 (2.0)	0.70	16.1 (2.9)	13.7 (2.4)	0.06
Employeda	2 (14.3%)	2 (14.3%)	1	4 (14.3%)	0 (0%)	0.87
Marital statusa			0.05*			0.27
Single	0 (0%)	3 (21.4%)		3 (10.7%)	1 (14.3%)
Married/partnered	13 (92.9%)	7 (50.0%)		20 (71.4%)	3 (42.9%)
Divorced	0 (0%)	3 (21.4%)		4 (14.3%)	3 (42.9%)
Widowed	1 (7.7%)	1 (7.1%)		1 (3.6%)	0 (0%)
Housinga			1			1
House/apartment/condominium	14 (100%)	13 (92.9%)		27 (96.4%)	7 (100%)
Senior housing (independent)	0 (0%)	1 (7.1%)		1 (3.6%)	0 (0%)
Number of falls in the past 6 monthsb	7.4 (13.8)	13.5 (48.5)	0.66	10.5 (35.1)	0.3 (0.8)	0.14
Assistive device use when walkinga
Yes	8 (57.1%)	9 (64.3%)	0.48
No	6 (42.9%)	5 (35.7%)
Hearing aid usea						0.56
Yes	2 (14.3%)	2 (14.3%)	1	4 (14.3%)	0 (0%)
No	12 (85.7%)	12 (85.7%)		24 (85.7%)	7 (100%)
Body mass index (kg/m2)b	27.1 (5.1)	27.1 (6.7)	0.39	27.1 (5.9)	26.6 (4.5)	0.82
Number of comorbiditiesb	3.1 (1.9)	4.1 (2.6)	0.26	3.6 (2.3)	2.3 (1.4)	0.08

^aFisher’s exact tests were used for categorical variables.

^bTwo-tailed, independent T-tests were used for continuous variables.

^*p values indicate significant differences between Parkinson’s participants enrolled with a care partner and those enrolled without a care partner at the .05 level.

Participants With PD in TeleDREAMS Versus In-Person DREAMS

In DREAMS, nine individuals with PD were enrolled and seven completed the lessons (attrition rate of 22.2%). DREAMS participants did not differ from TeleDREAMS participants on any baseline characteristics (see Table 2).

Outcome Measures

Within Care Partners Before and After TeleDREAMS

After TeleDREAMS, no changes were noted in performance on any measure (see Table 3).

Table 3.

Pretest and Posttest Values for Outcome Measures

	N	Pre M (SD)	Post M (SD)	p b	Cohen’s d
A: CarePartner TeleDREAMS Group
aMontreal Cognitive Assessment (/30) (baseline only)	15	23.5 (3.6)
aTower of London (baseline only)	15
Total Achievement Score (scaled) (/19)		9.1 (3.4)
Mean first move time (scaled) (/19)		10.7 (3.7)
Time per move ratio (scaled) (/19)		8.6 (4.5)
REALM percent correct (%)c	15	95.2 (5.3)	95.4 (6.3)	0.84	0.03
S-TOFHLA percent correct (%)d	15	33.9 (3.5)	34.9 (1.6)	0.29	0.37
TOSLS percent correct (%)f	15	45.7 (6.2)	46.3 (25.2)	0.19	0.26
Advocate literacy percent correct (%)	14	52.3 (21.0)	53.6 (22.3)	0.55	0.04
Beck Depression Index^ (/63)	15	6.8 (6.0)	7.2 (7.3)	0.65	0.06
Short Form-12 (/100)	15
Mental health composite		46.0 (6.2)	42.9 (6.6)	0.10	0.49
Physical health composite		54.6 (6.8)	55.0 (6.5)	0.65	0.06
B: Parkinson’s TeleDREAMS Group
aMontreal Cognitive Assessment (/30) (baseline only)	28	24.2 (4.8)
aTower of London (baseline only)	28
Total Achievement Score (scaled)		9.7 (3.6)
Mean first move time (scaled)		10.5 (4.2)
Time per move ratio (scaled)		8.1 (4.8)
REALM percent correct (%)c	28	94.3 (10.8)	94.3 (11.0)	0.91	0.005
S-TOFHLA percent correct (%)d	28	31.0 (7.6)	32.5 (7.1)	0.03*	0.21
TOSLS percent correct (%)e	26	45.6 (27.0)	47.3 (25.2)	0.49	0.06
Advocate literacy percent correct (%)	25	47.1 (21.7)	55.0 (18.0)	0.32	0.39
Beck Depression Index^ (/63)	28	15.4 (11.6)	13.9 (11.5)	0.33	0.12
Short Form-12 (/100)	28
Mental health composite		40.7 (8.4)	38.8 (9.7)	0.36	0.21
Physical health composite		40.3 (11.8)	41.4 (13.7)	0.57	0.09

^aBaseline measures only.

^bPaired T-test comparing pretest and posttest values on behavioral measures within the Parkinson’s group.

^cRapid Estimate Adult Literacy Measurement.

^dShort Test of Functional Health Literacy Assessment.

^eTest of Scientific Literacy Skills.

^fCenter for Epidemiologic Studies Depression Scale.

^{^}Higher scores indicate worsening function/performance; otherwise, higher scores indicate improvement.

^*p values indicate significant differences between pretest and posttest scores at the .05 level.

Within PD Before and After TeleDREAMS

After TeleDREAMS, the PD groups performed significantly better on S-TOFHLA (see Table 3).

Satisfaction for TeleDREAMS

The exit survey indicated that participants were satisfied by TeleDREAMS. Both PD and care partner groups reported they agreed or strongly agreed that the classes or activities enhanced their knowledge and skills about the topics (PD: 21/23; care partner: 10/11) and would influence how they cared for themselves (PD: 19/23; care partner: 7/11), that they would attend future activities if offered (PD: 20/23; care partner: 10/11), that they had been more mentally active (PD: 18/23; care partner: 8/11), and that they enjoyed participating (PD:17/23; care partner: 9/11). Participants found the content to be useful (PD:21/23; care partner:10/11) and high quality (PD:20/23; care partner:11/11), and they agreed or strongly agreed that they would participate in the program if it were continued (PD:15/23; care partner: 8/11; see Table 4).

Table 4.

Exit Survey Assessing Participant Satisfaction With TeleDREAMS

Statements	Entire sample (n = 34) M (SD)	Parkinson’s (n = 23) M (SD)	Care partner (n = 11) M (SD)	TeleDREAMS (n = 23) M (SD)	In-Person DREAMS (n = 7) M (SD)	p
Program enhanced knowledge/skills.
Strongly disagree	1 (2.9%)	1 (4.3%)	0 (0%)	1 (4.3%)	0 (0%)	0.38
Disagree	0 (0%)	0 (0%)	0 (0%)	0 (0%)	0 (0%)
Neutral	2 (5.9%)	1 (4.3%)	1 (9.1%)	1 (4.3%)	0 (0%)
Agree	23 (67.6%)	16 (69.6%)	7 (63.6%)	16 (69.6%)	3 (42.9%)
Strongly agree	8 (23.5%)	5 (21.7%)	3 (27.3%)	5 (21.7%)	4 (57.1%)
Program will influence self-care.
Strongly disagree	0 (0%)	0 (0%)	0 (0%)	0 (0%)	0 (0%)	0.63
Disagree	0 (0%)	0 (0%)	0 (0%)	0 (0%)	0 (0%)
Neutral	8 (23.5%)	4 (17.4%)	4 (36.4%)	4 (17.4%)	2 (28.6%)
Agree	15 (44.1%)	11 (47.8%)	4 (36.4%)	11 (47.8%)	2 (28.6%)
Strongly agree	11 (32.4%)	8 (34.8%)	3 (27.3%)	8 (34.8%)	2 (28.6%)
Program provided me with useful information.
Strongly disagree	1 (2.9%)	1 (4.3%)	0 (0%)	1 (4.3%)	0 (0%)	0.64
Disagree	0 (0%)	0 (0%)	0 (0%)	0 (0%)	0 (0%)
Neutral	2 (5.9%)	1 (4.3%)	1 (9.1%)	1 (4.3%)	0 (0%)
Agree	20 (58.8%)	14 (60.9%)	6 (54.5%)	14 (60.9%)	3 (42.9%)
Strongly agree	11 (32.4%)	7 (30.4%)	4 (36.4%)	7 (30.4%)	4 (57.1%)
Quality of classes was high.
Strongly disagree	2 (5.9%)	2 (8.7%)	0 (0%)	2 (8.7%)	0 (0%)
Disagree	0 (0%)	0 (0%)	0 (0%)	0 (0%)	0 (0%)	1.00
Neutral	1 (2.9%)	1 (4.3%)	0 (0%)	1 (4.3%)	0 (0%)
Agree	17 (50.0%)	9 (39.1%)	8 (72.7%)	9 (39.1%)	3 (42.9%)
Strongly agree	14 (41.2%)	11 (47.8%)	3 (27.3%)	11 (47.8%)	4 (57.1%)
I would attend future programs.
Strongly disagree	1 (2.9%)	1 (4.3%)	0 (0%)	1 (4.3%)	0 (0%)	0.85
Disagree	1 (2.9%)	1 (4.3%)	0 (0%)	1 (4.3%)	0 (0%)
Neutral	3 (8.8%)	1 (4.3%)	2 (18.2%)	1 (4.3%)	0 (0%)
Agree	14 (41.2%)	9 (39.1%)	5 (45.5%)	9 (39.1%)	2 (28.6%)
Strongly agree	15 (44.1%)	11 (47.8%)	4 (36.4%)	11 (47.8%)	5 (71.4%)
I enjoyed participating.
Strongly disagree	1 (2.9%)	1 (4.3%)	0 (0%)	1 (4.3%)	0 (0%)	0.56
Disagree	0 (0%)	0 (0%)	0 (0%)	0 (0%)	0 (0%)
Neutral	7 (20.6%)	5 (21.7%)	2 (18.2%)	5 (21.7%)	0 (0%)
Agree	11 (32.4%)	6 (26.1%)	5 (45.5%)	6 (26.1%)	2 (28.6%)
Strongly agree	15 (44.1%)	11 (47.8%)	4 (36.4%)	11 (47.8%)	5 (71.4%)
If I could, I would continue participating in this program.
Strongly disagree	2 (6.1%)	1 (4.5%)	1 (9.1%)	1 (4.5%)	0 (0%)	0.40
Disagree	2 (6.1%)	2 (9.1%)	0 (0%)	2 (9.1%)	0 (0%)
Neutral	6 (18.2%)	4 (18.2%)	2 (18.2%)	4 (18.2%)	0 (0%)
Agree	14 (42.4%)	9 (40.9%)	5 (45.5%)	9 (40.9%)	2 (28.6%)
Strongly agree	9 (27.3%)	6 (27.3%)	3 (27.3%)	6 (27.3%)	5 (71.4%)
I have been more physically active.
Strongly disagree	1 (2.9%)	1 (4.3%)	0 (0%)	1 (4.3%)	0 (0%)	0.42
Disagree	4 (11.8%)	2 (8.7%)	2 (18.2%)	2 (8.7%)	1 (14.3%)
Neutral	18 (52.9%)	12 (52.2%)	6 (54.5%)	12 (52.2%)	3 (42.9%)
Agree	9 (26.5%)	7 (30.4%)	2 (18.2%)	7 (30.4%)	1 (14.3%)
Strongly agree	2 (5.9%)	1 (4.3%)	1 (9.1%)	1 (4.3%)	2 (28.6%)
More mentally active.
Strongly disagree	1 (2.9%)	1 (4.3%)	0 (0%)	1 (4.3%)	0 (0%)
Disagree	1 (2.9%)	0 (0%)	1 (9.1%)	0 (0%)	1 (14.3%)	0.04*
Neutral	8 (23.5%)	4 (17.4%)	4 (36.4%)	4 (17.4%)	1 (14.3%0
Agree	20 (58.8%)	16 (69.6%)	4 (36.4%)	16 (69.6%)	2 (28.6%)
Strongly agree	4 (11.8%)	2 (8.7%)	2 (18.2%)	2 (8.7%)	3 (42.9%)

Note. Statements about TeleDREAMS and its influence on aspects of the participants’ life rated on a 5-point Likert scale (1 = strongly disagree, 2 = disagree, 3 = neutral, 4 = agree, 5 = strongly agree).

^aFisher’s exact test comparing PD participants and TeleDREAMS and in-person DREAMS.

^*p values indicate significant differences at the .05 level.

PD Participants With Versus Those Without a Care Partner

With and without adjusting for differences in marital status, PD participants who enrolled with a care partner performed significantly better on the S-TOFHLA and the TOSLS than PD participants enrolled without a care partner (see Table 5).

Table 5.

Change Scores Comparing Individuals With Parkinson’s With a Care Partner Versus Those Without a Care Partner

	Changea
Measures	Parkinson’s with care partner (n = 14) M (SD)	Parkinson’s without care partner (n = 14) M (SD)	p-valueb	p-valuec	Cohen’s d
REALM percent correct (%)d	0.43 (1.55)	−0.32 (1.29)	0.43	0.33	0.31
S-TOFHLA percent correct (%)e	3.07 (4.46)	0 (0.78)	0.02*	0.02*	0.96
TOSLS percent correct (%)f	5.87 (10.4)	−2.81 (11.4)	0.05*	0.05*	0.79
Advocate Literacy Percent Correct (%)	−0.71 (14.0)	4.64 (9.70)	0.25	0.27	0.45
Beck Depression Index^	−1.21 (10.06)	−1.64 (4.67)	0.89	0.92	0.05
Short Form-12 (/100)
Mental health composite	−3.05 (13.44)	−0.75 (7.37)	0.58	0.58	0.21
Physical health composite	0.67 (11.66)	1.74 (10.62)	0.80	0.76	0.10

^aChange scores calculated by posttest minus pretest of average performance on outcome measures.

^bIndependent T-test comparing change scores between PD participants enrolled with a care partner and those enrolled without a care partner.

^cLinear regression model adjusting for marital status comparing scores between PD participants enrolled with and without a care partner.

^dRapid Estimate Adult Literacy Measurement.

^eShort Test of Functional Health Literacy Assessment.

^fTest of Scientific Literacy Skills.

^gCenter for Epidemiologic Studies Depression Scale.

^{^}Higher Scores indicate worsening function/performance; otherwise, higher scores indicate improvement.

^*p values indicate significant differences between the group of participants that did not complete the TeleDREAMS program and the group of participants that completed the program at the .05 level.

In-Person DREAMS Versus TeleDREAMS

There were no significant differences between groups in performance. Medium effect sizes were noted on the REALM and the S-TOFHLA (see Table 6).

Table 6.

Change Scores Comparing Individuals With Parkinson’s From TeleDREAMS and the In-Person DREAMS Team Program

	Changea
Measures	TeleDREAMS (n = 28) M (SD)	In-Person DREAMS (n = 7) M (SD)	P-valueb	Cohen’s d
REALM percent correct (%)c	0.05 (2.41)	1.30 (2.04)	0.19	0.52
S-TOFHLA percent correct (%)d	1.48 (3.46)	−0.57 (3.60)	0.20	0.60
Beck Depression Inventory^	−1.38 (7.56)	0.43 (1.51)	0.24	0.27
Short Form-12
Mental health composite	1.49 (5.01)	−1.83 (10.5)	0.24	0.34
Physical health composite	−1.27 (4.90)	1.16 (10.76)	0.38	0.24

^aChange scores calculated by posttest minus pretest on behavioral measures.

^bIndependent T-test comparing change scores between PD participants in TeleDREAMS and DREAMS.

^cRapid Estimate Adult Literacy Measurement.

^dShort Test of Functional Health Literacy Assessment.

^{^}Higher Scores indicate worsening function/performance; otherwise, higher scores indicate improvement.

^*p values indicate significant differences at the .05 level.

On satisfaction per the exit survey, more individuals in DREAMS reported that they strongly agreed that they had been more mentally active (see Table 4).

Follow-Up Survey 6–9 Months

Twenty-four participants completed the 6–9 month follow-up survey. Of these 24, 15 (62.5%) participants reported that they engaged in Parkinson’s advocacy events and attended research or education seminars following completion of TeleDREAMS. Four (16.7%) individuals noted that they had been involved in other studies since the TeleDREAMS program. Eight (33.3%) participants had given presentations to their peers or others about topics related to research, advocacy, or Parkinson’s. Nineteen (79.2%) individuals reported that participating in TeleDREAMS confirmed their already positive views on clinical research and researchers in general or changed the way they thought about clinical research and researchers in a positive direction.

Responses to the follow-up questions reflected positive feedback. One participant stated: “It [TeleDREAMS] heightened my awareness for participants for research. It helped me see research from the researchers’ point of view. The program provided a great overview of the entire clinical research world and then dove deep into many parts of it.”

Other participants commented on how the program influenced how they think about research and their future involvement saying, “TeleDREAMS encouraged me to more actively participate in research studies” and another stated, “TeleDREAMS has definitely increased my awareness, and I want to be more actively involved.”

Discussion

TeleDREAMS may have benefited health literacy in participants with PD. PD participants enrolled with a care partner may have benefited more on health literacy than those enrolled without a care partner. Both care partner and PD groups rated the program highly, and in follow-up, many reported that they engaged in advocacy events, attended research or education seminars, and several had presented to their peers about research, an important downstream effect of the program. PD participants in TeleDREAMS had lower attrition rates and seemed equally satisfied with their program compared to the DREAMS participants.

The PD group significantly improved from baseline on the S-TOFHLA, a measure of ability to understand health information through reading comprehension passages (Baker et al., 1999). TeleDREAMS curriculum emphasized reading health-related information and articulating what was learned, which may have increased scores. Individuals with low health literacy may have limited knowledge about their disease and potential lifestyle modifications that could stabilize their condition. Health literacy also may be important for finding clinical trials and understanding the clinical research process (Evans et al., 2012; Utami et al., 2014).

The exit survey revealed positive ratings for the program in PD and care partner groups. Participant willingness to attend future programs and classes for the study indicates their commitment. The follow-up survey also highlights promising results with most participants reporting that they engaged in advocacy events and research/educational seminars and believed that TeleDREAMS confirmed positive attitudes toward research or changed the way that participants thought about clinical research/researchers in overall positive ways.

PD With Care Partners Versus People With PD Without Care Partners

Reading with a care partner may have contributed to greater knowledge comprehension causing PD participants enrolled with care partners to improve from baseline on the S-TOFHLA and the TOSLS, which is a considerably challenging examination. Individuals with a care partner have increased health benefits, remember more after an informed consent session, and have lower rates of mortality (Dickens et al., 2004; Spillman, 2016; Teng et al., 2012). A study found that in attentive students, paired reading impacted improved comprehension of material (Mittal et al., 2012), which supports our findings.

TeleDREAMS Versus In-Person DREAMS in PD Participants

The comparison of DREAMS with TeleDREAMS shows greater health literacy benefits in TeleDREAMS participants. Likely, the format that works best for a given individual depends on that individual’s learning style. Some factors that could have contributed to the differences in between DREAMS and TeleDREAMS, include receiving information through oral communication with audio/visual aids (in DREAMS), as opposed to reading in TeleDREAMS; individual, one-to-one “coaching” received by those in TeleDREAMS compared with small and large group discussions; and actively traveling to a location to hear a lecture given by an expert (in DREAMS) versus consuming the educational material at home without traveling.

For participants with PD, attrition rates were higher in DREAMS than in TeleDREAMS highlighting the increased accessibility of TeleDREAMS versus an in-person model. However, more participants in DREAMS reported they strongly agreed that they were more mentally active than those in TeleDREAMS upon program completion. DREAMS included more sensory stimulation through auditory and visual senses, which have been shown to be important for retention and compliance (Roland et al., 1987). TeleDREAMS provided sensory stimulation through pictures, websites, and supplemental content, although, it is unknown the extent to which participants used these materials. Future studies should investigate the impact of supplemental materials, especially in remote delivery models, and determine how often supplemental material is accessed.

Program Strengths

TeleDREAMS is a successful remote program with a “low-tech” delivery format (hard copy binders and phone calls) that can positively affect knowledge acquisition, communication, and social support. Further, the program was well received by participants. During a pandemic like COVID-19, remote methods of knowledge acquisition, communication, social support and outreach are necessary for older adults. Current trends are to deliver educational and instructional programs via virtual, and software-based means. However, virtual technology or software-based programs have drawbacks given many older adults’ reticence to use technology because of end-user challenges. There remains room for low-tech, yet effective, and cost-efficient methods.

Opportunities for follow-up conversation and processing of the content may have been welcome to caregivers and patients. Caring for someone with PD or contending with the condition oneself is very challenging, requiring vigilance that can be exhausting. The weekly conversations may have been an enjoyable and engaging break from regular life and may have allowed both participants with PD and care partners to focus on learning more about research and advocating in their own way. An activity like TeleDREAMS may be one of few avenues by which these individuals and their care partners can “do at least something” to improve their situations given the current state of medications, surgery, and therapies, which are inadequate.

Limitations

With a small sample size, the study was underpowered to determine some effects. Effect sizes generated from this project should be considered useful for powering future studies that will more definitively test the hypotheses considered here. Some measures may have been vulnerable to practice effects. However, the performance of this study’s older participants may be less susceptible to the practice effect because practice effects become smaller with increased age (Calamia et al., 2012). These findings may be subject to self-selection bias as many individuals were recruited from Parkinson’s community events and within Emory’s Center for Health in Aging’s community outreach programs indicating these individuals may have already known how to locate helpful resources and had may have had interest in research. Age was significantly different between completers and non-completers and was therefore a main factor in withdrawals. Expository text, like material presented in TeleDREAMS modules, is more difficult to comprehend for older than younger adults (De Beni et al., 2007). Although the TeleDREAMS reading level was carefully curated to be accessible, the eighth grade reading level may have contributed to withdrawals. Other characteristics that likely contributed were health issues and multiple obligations. Future work should examine how to remove these barriers to research completion and participation. Despite literature indicating improved mood and QOL through educational interventions (A’Campo et al., 2010; Dillard et al., 2018; Simons et al., 2006), depression scores and QOL ratings did not improve. TeleDREAMS lacks in-person socialization, and there was no group interaction between participants. Interviews with older adults indicate that the most preferred form of communication is face-to-face (Yuan et al., 2015) and ample literature supports the benefits of group trainings and therapy. At least some in-person social interactions may be important for therapeutic effects on depression scores in older adults contending with serious neurological disease and their care partners. Continued recruitment of people from underserved areas that lack access to Movement Disorders specialty clinics, Centers for aging, and programs like TeleDREAMS is also necessary to reach those who are not already inclined to nor can participate in research.

Conclusion

This research shows promise for a telehealth education model to improve health and research literacy, research advocacy and involvement in participants with PD and their care partners. If increased attendance at advocacy events translates to increased research involvement in the future, then TeleDREAMS could be helpful for researchers looking to increase research participation in individuals with PD and their care partners.

Practice Implications

In addition to participants receiving the educational material remotely and engaging in weekly interviews/coaching, group webinars or possibly in-person sessions could be arranged intermittently to create a sense of community, and to additionally encourage discussion and learning. Given low enrollment in PD studies, TeleDREAMS is one intervention that could be distributed to individuals with PD and care partners to improve research and health literacy and possibly lead to increased participation in other research and clinical trials to help increase understanding of PD treatments and therapies.

Public Significance Statement.

TeleDREAMS, a low-tech, remote learning research education and advocacy training program may be effective at improving health literacy and encouraging research participation in people with Parkinson’s and their caregivers.

Appendix

Table A1.

Submodules of the TeleDREAMS Program

Week 1: Introduction to Research Advocacy

Learn what an advocate is and what it means to be an advocate.

Including people with PD and care partners in study decision making; peer-to-peer education.

How to contribute to age-related research focusing on diverse groups.

Recognize who can become an advocate (hint . . . you!).

Learn strategies and work with community members to advance the interests of all people in the Parkinson’s and research communities.

Supporting research participants; teaching peers how to get involved.

Understand the importance of building relationships for clinical scientific research.

Week 2: Parkinson Disease Clinical Research in the Pipeline

What is research?

What are the different types of research?

How is research funded?

What are the different types of clinical research trials and what steps do they go through?

Why does research matter?

What could participation in research mean for me?

What should one consider when deciding whether or not I should participate in research?

Where can I get more information about research participation and studies?

Week 3: Ethics and Research

What is ethics in research?

Why is ethics important in research?

What factors are important for ethics in research?

What important ethical factors are there for aging research?

Understand the role of hope and false hope in research?

What are the two approaches to research?

Know what happens when unethical research is allowed to take place?

What laws are there to prevent unethical research?

Week 4: Analysis and Evaluation of Clinical Research

What are the major parts of a scientific research paper?

What are the minimum and maximum?

What is the mean or average?

What is the mode?

What is a p-value?

What does significance mean?

Week 5: Aging and Clinical Research

What is aging and what changes go along with aging?

What are the different types of studies that interest you?

How can you find clinical trials?

What are the pros and cons of participating in clinical studies?

How can I make a difference?

Week 6: Understanding Informed Consent and Health Literacy

What are the definitions of health literacy?

How does health literacy affect you?

What is informed consent?

How can you ensure that you are informed?

How can you communicate health literacy to others?

Week 7: Effective Advocacy in the Clinical Research Process

What are some of the benefits advocates bring to the clinical research process?

What are the roles and responsibilities of a research advocate?

What are the roles and responsibilities of a researcher?

How can you be an effective advocate?

Week 8: Engaging Diverse Communities in Research and Getting Started as a Research Advocate

What is a clinical trial? What is an observational study?

Do clinical trial populations equally represent the targeted population?

How does the lack of diversity within a clinical trial effect the safety of treatment options for the general population?

How can you help to improve racial and ethnic diversity in clinical trial populations?