Development and Process Evaluation of Sickle Stroke Screen: A Patient Educational Initiative to Improve Transcranial Doppler Screening in Sickle Cell Anemia

Abstract

Background: Effective education is an important component of optimal care for sickle cell anemia. The purpose of this article is to describe the development and process evaluation of an educational initiative for stroke risk screening, including perspectives from providers, coordinators, and caregivers as well as lessons learned for future initiatives. Method: A new term, “Sickle Stroke Screen,” and an infographic for stroke risk screening were developed using patient/family input and branding expertise. A pamphlet and poster were developed via iterative feedback with hematological providers. Thirteen sites implemented the educational initiative as part of a multicomponent intervention study over 2 years. Evaluation included surveys and interviews with 13 site providers and six coordinators and surveys with 80 caregivers. Descriptive statistics were used for survey results, and content analysis was used for interviews. Results: Providers and coordinators commented on processes, successes, and barriers to the intervention. Key process themes included methods of delivering information and refining processes. Key successes included intervention impact, helpfulness, and ease of use. Inconsistency was a core barrier reported across the study with some improved success over time. Caregivers felt positively about the educational materials, including liking, understanding, and feeling motivated to act based on the new education. Discussion: Patient/family feedback and branding expertise were critical to developing an educational initiative that was well received by providers, coordinators, and other families. Inconsistency was a barrier worsened by healthcare complexity and the pandemic, though flexible delivery methods and commitment to education helped sites to be successful over time.

Introduction

Sickle cell anemia (SCA), the most severe form of sickle cell disease (SCD), is an inherited blood disorder caused by abnormal red blood cells that deform under hypoxic conditions (Piccin et al., 2019). Stroke is a devastating complication of SCA; however, screening for stroke risk using transcranial Doppler (TCD) can reduce risk by over 90% if children are promptly started on chronic transfusion therapy (Adams et al., 1998). Annual TCD screening between the ages of 2 and 16 has been formally adopted into clinical guidelines for SCA, including most recently in the 2020 American Society of Hematology Cerebrovascular Guidelines (DeBaun et al., 2020; Section on Hematology/Oncology Committee on Genetics; American Academy of Pediatrics, 2002; Yawn et al., 2014).

Despite longstanding guidelines, implementation of TCD screening in SCA has been poor (Kwiatkowski et al., 2019; Reeves, Fullerton, et al., 2016; Reeves, Madden, et al., 2016; Weisman et al., 2020). Dissemination and Implementation of Stroke Prevention Looking at the Care Environment (DISPLACE) and related studies were designed to identify barriers and facilitators to stroke prevention practices and to develop novel interventions to improve guideline-informed care. DISPLACE Part 1, a baseline assessment, confirmed concerns about implementation and found an overall TCD screening rate of only 49.9% (range: 30.9%–74.7%) among a 28-site consortium (Kanter et al., 2021). DISPLACE Part 2, a barriers and facilitators assessment, identified prominent and remediable barriers and facilitators to screening that could be targeted through intervention, one of which was improved education (Phillips et al., 2021). Specifically, qualitative interviews with patients/caregivers and providers suggested effective education was essential for screening. In addition, caregivers found the medical term “TCD” confusing and inadequate for depicting the test purpose. These findings were consistent with a prior study in which caregivers described a lack of knowledge as the key barrier to TCD screening for SCA (Bollinger et al., 2011). Collectively, this work suggested an educational intervention had potential for remediating a clear issue of stroke risk screening identified by families and providers.

Previous educational initiatives in SCD have varied in focus and delivery method. Calhoun et al. (2019) evaluated whether skills-focused handouts could be beneficial for improving transition readiness in adolescents with SCD. They found handouts were easily implemented, well accepted by patients, and improved healthcare skills postintervention when compared to baseline. Frei-Jones et al. (2009) evaluated a multimodal intervention (including an educational initiative for providers and patients/caregivers) to improve evidence-based care during hospital admissions for SCD pain. They found reduced 30-day readmission rates that were attributed to improved care during admission because of the study's educational component, suggesting improved education among providers and patients/caregivers could lead to enhanced adoption of evidence-based care. Finally, Cronin et al. (2023) conducted a feasibility randomized control trial of a patient-centered mHealth app versus booklets for adults with SCD focused on guideline-informed care. They found high enrollment rates, with early results suggesting both the app and booklet improved disease knowledge.

The purpose of this article is to describe the development and process evaluation of a TCD educational and rebranding initiative that was part of a multicomponent implementation trial delivered in DISPLACE Part 3. The lessons learned can inform future educational interventions for SCA and other chronic conditions with disease-specific screenings or interventions.

Method

Overview of DISPLACE Study

DISPLACE was a multicomponent intervention study that included an educational and rebranding initiative (described in this article) as well as a web-based application for providers and clinic teams to track stroke risk screenings for all sites and a single coordinator randomized to half of sites. The implementation period was June 2020 to June 2022 and included 16 sites from DISPLACE Part 1 with the lowest TCD screening rates; however, three sites were unable to initiate study procedures following the site readiness phase, resulting in 13 final sites. The development and site readiness stages of the educational and rebranding initiative are described below along with methods for process evaluation using feedback from providers and coordinators at mid- and endpoint (1 and 2 years into the implementation period, respectively) and via surveys with caregivers at endpoint. The overall development and process evaluation are also detailed in Figure 1.

Figure 1.

Overview of educational intervention development and process evaluation

Note. MUSC = Medical University of South Carolina; UAB = University of Alabama at Birmingham.

Development of the Educational Intervention

The educational initiative involved developing a rebranded term, logo, and infographic for TCD and creating an educational pamphlet about stroke risk screening. To develop a patient-centered term for TCD, interviews conducted in DISPLACE Part 2 were used to extract keywords families used to describe TCD (Phillips et al., 2021). Of 27 interviews, 11 caregivers/patients (41%) either did not know what was meant by “transcranial Doppler” and/or “TCD” (n = 7) or requested clarification (n = 4). Nineteen caregivers described TCD in their own words (Table 1). These descriptions highlighted the importance of linking TCD screening to brain, stroke, and SCA, resulting in two new rebranded terms: Sickle Stroke Screen and Stroke Risk Screen (for SCA). The descriptions also suggested imagery of a brain and blood vessels could have utility in a supplemental infographic.

Table 1.

DISPLACE Part 2 Caregiver Descriptions of Transcranial Doppler Screening (N = 19)

Words or ideas	Frequency, n (%)	Illustrative quote
Brain	10 (52.6)	“They check on his brain. They catch something before it gets worse.”
Stroke	7 (36.8)	“Look for advancing signs of stroke.”
Blood flow	6 (31.6)	“You can see whether the blood is flowing up there or if it's not flowing like it's supposed to.”
Ultrasound or jelly/wand	3 (15.8)	“It's the jelly and wand type thing. It's cool because you can see the blood and oxygen inside.”
Blood or blood disorder	2 (10.5)	“Understanding the connection between blood disorder and the brain.”
Blood vessels	2 (10.5)	“Ultrasound of the veins and the blood vessels in your head.”
Oxygen	2 (10.5)	“Their oxygen levels in their brain is working.”
Brain cells	2 (10.5)	“Make sure her brain cells were moving at the right pace and not almost at stroke level.”

Note. DISPLACE = Dissemination and Implementation of Stroke Prevention Looking at the Care Environment.

Using this information, the study principal investigator (PI; J.K.) worked with a branding specialist at the University of Alabama at Birmingham (UAB) to develop prototypes for a new logo and infographic. Four logos and two infographics were chosen by the central study team to present to caregivers and patients for additional review (Tables 2 and 3). Twenty families from the Lifespan Comprehensive Sickle Cell Centers from the Medical University of South Carolina (MUSC; n = 10) and UAB (n = 10) selected their preferred logo and rationale for what they selected. The subset of 10 families from MUSC participated in additional questions about the logo and infographic. Research processes were exempt after review from MUSC's Institutional Review Board (IRB) and were not considered human subjects research for UAB. Eligible families included caregivers of patients with SCA ages 2–16 years and adolescents ages 13–16 years who were familiar with TCD. Following prescreen for eligibility by providers, coinvestigators (S.M.P. or A.M.S.) or a research coordinator (J.D.) met with interested families in private clinic rooms. For MUSC, an introductory statement describing the purpose and voluntary nature of the questions was provided. Families provided feedback on their preferred term for TCD (without specific logo detail) and logo (color, font, layout, picture) and answered questions about the infographic (overall impressions, pictures of family, teen, and brain, whether anything was missing). A final open-ended question was asked for additional feedback.

Table 2.

Prototype Logos and Family Preferences (N = 20)

Option No.	Logo	Preferred by participants (n)
		Total	MUSC	UAB
1		3	2	1
2		9	4	5
3		7	4	3
4		1	0	1

Note. Nineteen of 20 families consisted only of caregivers, and one consisted of a caregiver and adolescent who generated one response for their family. MUSC = Medical University of South Carolina; UAB = University of Alabama at Birmingham.

Table 3.

Prototype Infographics and Family Preferences (N = 11)

Option No.	Infographic	Preferred by participants (n)
1		9
2		2

Note. One family consisting of a caregiver and adolescent had different preferences, resulting in an overall N of 11.

Most families preferred the term “Sickle Stroke Screen” (60%) with a stacked layout (Table 2). There were mixed reactions to the word “stroke.” Participants noted Sickle Stroke Screen felt less scary than the Stroke Risk Screen and was more specific to SCA. Some participants also felt the word “risk” was confusing and negative. Regarding the infographic, families felt positively about the brain imagery and noted “knowledge is power” was affirming and offset fear around the word “stroke.” Families preferred “stroke” to be integrated more into the infographic (Option 1; Table 3).

Once the new rebranded term (Sickle Stroke Screen), logo, and infographic were finalized, we worked with site PIs to develop an educational pamphlet (Figure 2). Site PIs provided copies of their educational materials which were collated through iterative feedback into one unified pamphlet. The reading level was evaluated using the Fry Graph Readability Formula and was at a seventh-grade level. Following site feedback in Year 1, we translated materials into Spanish, French, Swahili, and Haitian Creole, which were distributed for Year 2 implementation. A professional company translated the original pamphlet and native speakers affiliated with the study team reviewed translated versions (please see the Supplemental material for printable English and translated versions of the pamphlet). Poster templates with an enlarged infographic were also disseminated to sites to use in clinic spaces.

Figure 2.

Pamphlet containing the Sickle Stroke Screen logo and infographic used in the educational initiative.

Note. TCD = transcranial Doppler; MRI = magnetic resonance imaging.

Site Preparation and Readiness

Sites were educated about the rebranded term Sickle Stroke Screen. The pamphlet and poster templates with the logo and infographic were disseminated for use in clinic spaces. To assess site readiness, we administered Research Electronic Data Capture (REDCap) surveys to site PIs and conducted follow-up calls to provide support and assistance with dissemination. Site readiness focused on sites’ commitment to implement the intervention, such as having a specific implementation plan (see the Supplemental material). The survey and follow-up questions were developed based on elements from the Consolidated Framework for Implementation Research (Damschroder et al., 2009) and contained up to 40 items, 10 specific to the educational intervention. Response options varied and included 5-point Likert scale (strongly disagree to strongly agree), yes/no, and open-ended. Sixteen site PIs responded to surveys, and 15 participated in follow-up calls.

Almost all PIs agreed/strongly agreed the educational initiative had potential to improve rates of screening, and they endorsed feeling motivated to distribute the materials and confident they could carry out their plans. Most sites planned to distribute materials during clinic visits, with some also noting website, newsletter, registration desk, and in radiology. The majority (64%) disagreed/strongly disagreed it would be difficult to implement the educational initiative, and almost all sites agreed/strongly agreed the educational materials could be adapted to meet site needs. Sites reported few perceived challenges but noted the potential for providers and staff forgetting. One site reported a Spanish pamphlet would be helpful. Of note, the COVID-19 pandemic started during the site readiness phase of the study.

Educational Initiative Evaluation

Provider and Coordinator Evaluation: Surveys and Interviews

MUSC IRB approval was obtained for provider and coordinator process evaluation procedures, which included a waiver of signed consent. Providers (or designated site personnel implementing the DISPLACE interventions) and single coordinators were eligible for the process evaluation. A written or verbal introductory statement of research was provided to participants prior to data collection. Surveys mirrored those from site readiness and were administered to site SCD providers and single coordinators at mid- and endpoint. Midpoint surveys to providers included 42 items (7 on the educational intervention) and to coordinators (32 items; 12 on the educational intervention). At the endpoint, surveys to providers included up to 40 items (9 on the educational intervention) and to coordinators included up to 42 items (14 on the educational intervention). Demographic information was also collected. Following survey completion, site coinvestigators (S.M.P. or A.M.S.) conducted brief follow-up interviews via phone or videoconference to elaborate on survey responses. Examples of questions included: “What made it easy/difficult to implement the educational initiative?” and “What has made it easy/difficult to integrate the new information with previous materials used at your site?” Interviews were digitally audiorecorded and transcribed for analysis using Microsoft Word transcription. Coinvestigators conducted a quality assessment and redaction of transcriptions. Interview length ranged from 13 to 26 min (midpoint) and 6 to 23 min (endpoint).

Caregiver Evaluation: Surveys

Sites were asked to recruit caregivers to complete an endpoint survey regarding the educational materials during routine hematological visits. Caregivers were eligible if their child had SCA and was within the recommended age of 2–16 for stroke risk screening. The survey was developed using the National Cancer Institute publication, “Making Health Communication Programs Work” (National Cancer Institute, 2001) and included 16 closed-ended items and one open-ended item. Surveys were distributed via 10 DISPLACE sites using REDCap. Consent varied according to local site IRB procedures and included either a written introduction for waiver of signed consent or signed consent. Compensation was provided to participants in the form of a $20 gift card.

Data Analysis

For provider, coordinator, and caregiver results, quantitative (survey) data were downloaded from REDCap. Descriptive statistics were conducted, with proportions and frequencies for categorical data and means, medians, and ranges for continuous data. For providers and coordinators, content analysis was conducted with qualitative (interview) data and focused on implementation processes, successes, and barriers, and quantitative and qualitative results were integrated according to qualitative themes for a comprehensive evaluation of the intervention.

Results

Providers and Coordinators

Thirteen providers participated in mid- and endpoint assessments (Table 4). Providers were a mean 53 years of age, slightly over half were female, most were White (69%) and non-Hispanic (85%), and all were MDs. Eight coordinators participated in mid- and endpoint assessments (Table 4). Coordinators were a mean of 51 years of age, all were female, half were White, and most (88%) were non-Hispanic. Most were advanced practice registered nurses or registered nurses (63%), and coordinators had a mean of 9 years’ experience working with individuals with SCD.

Table 4.

Provider and Coordinator Demographics

Characteristic	M, Mdn (range), or n (%)
Providers (N = 13)
Age (years)	53, 56 (39–63)
Gender
Female	7 (54)
Male	5 (38)
Prefer not to respond	1 (8)
Racea
White	9 (69)
Asian	2 (15)
Black or African American	1 (8)
Prefer not to respond	1 (8)
Ethnicity
Hispanic, Latinx, or Spanish origin	1 (8)
Non-Hispanic, Latinx, or Spanish origin	11 (85)
Prefer not to respond	1 (8)
Provider type
MD	13 (100)
Years in clinical practice	23, 25 (6–39)
Years providing care to individuals with sickle cell disease	23, 22 (8–39)
Practice areaa
Pediatrics	10 (77)
Hematologist (sickle cell disease-specific)	10 (77)
Hematologist/oncologist	4 (31)
Practice age rangea
Infancy through adolescence	13 (100)
Young adult	10 (77)
Practice settinga
Urban	11 (85)
Rural	3 (23)
Suburban	2 (15)
Coordinators (N = 8)
Age (years)+	51, 48 (36–71)
Gender
Female	8 (100)
Racea
White	3 (50)
Black or African American	2 (25)
Asian	1 (13)
Prefer not to respond	1 (13)
Ethnicity
Hispanic, Latinx, or Spanish origin	1 (13)
Non-Hispanic, Latinx, or Spanish origin	7 (88)
Background/training
Advanced practice registered nurse	3 (38)
Registered nurse	2 (25)
Counseling psychology	1 (13)
Psychology/data management	1 (13)
Bachelor's degree/research coordinator experience	1 (13)
Years experience with sickle cell disease (clinical care or research)	9, 7 (2–26)

Note. MD = doctor of medicine.

^a Respondents could select more than one option + prefer not to respond (n = 1).

Provider and Coordinator Evaluation at Midpoint

Processes

Sites commented on methods of delivering information. Personnel included clinic providers or coordinators, with a couple of sites integrating radiology. Sites used varying methods of education, including a combination of the new terminology, pamphlets (most commonly by providing it to families in a clinic or less frequently by mail/email), and/or posters in the clinic. For example, Provider 5 described the clinic's varied methods of delivering information:

We have a weekly sickle cell meeting with all the … providers. (We) really tried to get everyone on board with starting to use the Sickle Stroke Screen nomenclature in addition to TCD. And then, with the actual materials, our clinic manager was able to get the posters displayed in most of the exam rooms in our clinic. And then we also have the pamphlets (in a) cubby within the clinic.

Among sites that adapted materials to meet their needs, most (70%) found the materials easy to adapt (Table 5). A few sites noted they continued to use preexisting educational material (e.g., video) alongside the new educational intervention.

Table 5.

Provider Survey Results (N = 13)

Item/response options	Midpoint n (%)a	Endpoint n (%)a
Has your site adapted the Sickle Stroke Screen educational materials?
Yes	7 (54)	8 (62)
No	4 (31)	3 (23)
I don’t know	1 (8)	1 (8)
Prefer not to respond	1 (8)	1 (8)
Has your site used the new translated materials?
No		13 (100)
The Sickle Stroke Screen educational materials were easily adapted to meet the specific needs of our site.
Strongly agree	4 (31)	4 (31)
Agree	3 (23)	7 (54)
Neutral	3 (23)	1 (8)
N/A	3 (23)	1 (8)
It has been difficult to implement the Sickle Stroke Screen educational initiative
Strongly agree	1 (8)	1 (8)
Agree	3 (23)	1 (8)
Neutral	3 (23)	4 (31)
Disagree	5 (38)	5 (39)
Strongly disagree	0 (0)	1 (8)
N/A	1 (8)	1 (8)
Distributing the educational materials has fit within our workflow
Strongly agree	3 (23)	3 (23)
Agree	4 (31)	4 (31)
Neutral	5 (38)	4 (31)
Disagree	0 (0)	2 (15)
N/A	1 (8)	0 (0)
Our site has incurred costs (financial, supplies, opportunity) beyond the resources provided by the grant to adopting the Sickle Stroke Screen educational materials.
Strongly agree	0 (0)	1 (8)
Agree	2 (15)	3 (23)
Neutral	1 (8)	3 (23)
Disagree	6 (46)	5 (39)
Strongly disagree	3 (23)	1 (8)
N/A	1 (8)	0 (0)

Note. N/A = not applicable.

^a Percentages across the rows do not always equal 100 due to rounding.

Successes

Several sites commented on the impact, helpfulness, and ease of use of the educational materials. Sites noted the terminology “resonates,” “is more powerful language,” and helps families understand the procedure and signs of stroke and made general comments about providers and families “liking” and appreciating the materials. For example, Provider 13 noted: “I think the biggest thing was just the whole branding of Sickle Stroke Screen instead of TCD. That has resonated quite a bit. It makes much more sense to families.” The educational materials were described as particularly helpful for families of younger children new to the procedure. Several sites commented on the helpfulness of having written material and visuals. One site mentioned the pamphlet may have had downstream effects on provider behavior, for example, the provider taking additional time to explain the procedure. A few sites commented on the ease of implementing the educational initiative; accordingly, most (54%) agreed/strongly agreed that distributing the materials fit within their workflow.

Barriers

Inconsistency was a primary barrier to implementation across several sites and applied to both the new terminology and pamphlet, though not all respondents reported difficulty. For example, 38% disagreed that it was difficult to implement the educational initiative; 31% agreed/strongly agreed they had difficulty with implementation. Inconsistency was the result of several factors, including difficulty remembering, accessing, and distributing materials; staff turnover; difficulty changing established practices; competing demands and busy clinics; families of older children being more accustomed to the term “TCD”; inconsistent terms used in hematology and radiology; and reduced in-person visits and use of physical materials due to COVID-19. Provider 4 detailed several challenges with consistency:

We are a large practice with multiple providers and it has been difficult to keep other providers engaged with the new kind of rebranding of TCD. It's kind of basically engrained in the vernacular of the group and so Sickle Stroke Screen hasn’t really … replaced TCD. The pamphlets are being used on some of the visits (not probably as much as I would like) with patients as far as kind of educational information. I think the pamphlet is helpful, but just not always there within reach of the provider.

Similarly, half of the coordinators were not providing the pamphlet to patients and families, and of those, two-thirds agreed/strongly agreed that it had been difficult to adopt the new terminology (Table 6).

Table 6.

Coordinator Survey Results (N = 6)

Item/response	Midpoint n (%)a	Endpoint n (%)a
Do you provide the Sickle Stroke Screen pamphlet to patients and families?
Yes	3 (50)	3 (30)
No	2 (50)	2 (33)
Prefer not to respond	0 (0)	1 (17)
Overall, we are satisfied with the educational materials (i.e., pamphlet) for Sickle Stroke Screen (TCD), (n = 3)
Strongly agree	0 (0)	1 (33)
Agree	2 (67)	2 (67)
Neutral	1 (33)	0 (0)
It has been difficult for us to adopt the name Sickle Stroke Screen (n = 3)
Strongly agree	1 (33)	0 (0)
Agree	1 (33)	2 (67)
Neutral	1 (33)	1 (33)
It has been difficult for us to distribute educational materials on Sickle Stroke Screen. (n = 3)
Agree	1 (33)	0 (0)
Disagree	2 (67)	3 (100)
What is your general reaction to the pamphlet? (n = 3)
I really like it	2 (67)	3 (100)
I think it is just okay	1 (33)	0 (0)
Has anything made it more difficult to use the educational materials? (n = 3)
Yes	1 (33)	0 (0)
No	2 (67)	3 (100)
Has anything made it easier to use the educational materials? (n = 3)
Yes	0 (0)	1 (33)
No	3 (100)	2 (67)
Did you use educational materials or other methods of teaching patients about TCD prior to receiving the Sickle Stroke Screen pamphlet? (n = 3)
Yes	3 (100)	3 (100)
How difficult has it been to integrate the new information with your previous materials? (n = 3)
Not at all difficult	1 (33)	2 (67)
Somewhat difficult	2 (67)	1 (33)
Has your site used the new translated materials?
No		5 (83)
I’m not sure		1 (17)

Note. TCD = transcranial Doppler.

^a Percentages across the rows do not always equal 100 due to rounding.

Additional barriers less commonly reported included language (described by sites with large subpopulations of families who spoke languages other than English); organizational barriers to putting up posters; cost of printing pamphlets in color (though most sites did not incur costs per surveys); incorrect printing; and difficulty reaching families who did not come to the clinic.

Provider and Coordinator Evaluation at Endpoint

Processes

At the endpoint, sites commented on refining processes, particularly to improve consistency (e.g., educating new personnel, organizing materials). Compared to the midpoint, more sites (85% vs. 54%) agreed/strongly agreed the educational materials were easily adapted to meet site needs, and all coordinators disagreed that it had been difficult to distribute materials (Tables 5 and 6). Provider 4 commented:

I think our clinic did a good job of really displaying the posters throughout the clinic—one in the frequent exam rooms that we use and one in the hallway, where they get labs … And we did improve a little bit. We had a new nurse coordinator join our group (who took) on the task of organizing this morning area of clinic where all of our patient education materials are … so I think that'll lead to the pamphlet getting distributed better.

Sites also commented on creating a new culture using the terminology and materials and adjusting education based on patient experience with TCD. For example, Coordinator 6 commented: “When I talk with families, I try to use the word Sickle Stroke Screen or I’ll say both because some are familiar with older terminology. Then I’ll just kind of bring up the new name.”

Successes

Sites continued to report on successes related to impact and helpfulness. Some sites also endorsed improved consistency as a success. Fewer sites found it difficult to implement the educational initiative (16%) versus midpoint (31%), and the proportion of sites that agreed/strongly agreed the materials fit within their workflow remained consistent. Sites continued to note the new terminology was meaningful to families and observed families started using the term. For example, Provider 10 reported: “It's interesting ’cause I would not have guessed before we did this that people would pick (Sickle Stroke Screen) as their preferred terminology. But that’s consistently something that they understand and like as the terminology.”

The pamphlet continued to be described as useful, particularly for families of younger children. One site noted that posters had been particularly helpful because patients would point to posters and initiate conversations with the provider.

Barriers

While some sites experienced improved consistency over time, others noted continued challenges with implementation inconsistency for reasons similar to midpoint. In addition, despite requests for translated materials, no sites reported distributing translated materials. As the pandemic evolved, a few sites noted challenges returning to clinic, such as finding new ways of organizing educational materials in person, getting patients to return to in-person appointments, and continuing clinic and study staff turnover that resulted in confusion. Additional challenges reported by one site each included lack of storage space for pamphlets and printing costs.

Caregiver Evaluation at Endpoint

At the endpoint, 80 caregivers from 10 sites provided survey feedback on the pamphlet. Caregiver participants were a mean of 35.9 years of age; most were female, African American or Black, and non-Hispanic. Approximately one-third had completed some college or obtained an associate degree, and most were working (Table 7). Caregivers’ children with SCD were a mean of 7.4 years of age, and approximately half were female. The majority were African American/Black and non-Hispanic. Most children had the HbSS subtype, and approximately two-thirds had Medicaid and/or Medicare insurance (Table 7).

Table 7.

Caregiver and Child With Sickle Cell Anemia Demographics

Variable	M, Mdn (range), or n (%)a
Caregivers (N = 80)
Age	35.9, 36 (23–61)
Gender: female	71 (88.8)
Race: African American/Black	74 (92.5)
Ethnicity: non-Hispanic/Latinx	74 (91.5)
Highest grade completed
High school or less	27 (33.8)
Some college or associate's degree	32 (40.1)
Bachelor's degree or above	19 (23.8)
Employment
Working	61 (76.3)
Looking for work	8 (10)
Disabled or temporarily laid off	4 (5)
Keeping house	5 (6.3)
Census area
Urban	38 (47.6)
Rural	13 (16.3)
Don’t know or prefer not to respond	28 (35.1)
Child with sickle cell anemia (N = 80)
Age	7.4, 7 (2–16)
Gender: female	42 (52.5)
Race: African American/Black	75 (93.8)
Ethnicity: non-Hispanic/Latinx	73 (91.3)
Sickle cell disease genotype
HbSS	72 (90)
Sickle beta thalassemia 0	2 (2.5)
Other/I don’t know/prefer not to respond	6 (7.5)
Insuranceb
Medicaid/Medicare	65 (81.3)
Employer sponsored	16 (20)
Private	1 (1.3)
I don’t know	1 (1.3)

^a Percentages across the rows do not always equal 100 due to rounding.

^b Respondents could select more than one option.

About half of the respondents had seen the pamphlet prior to survey completion, with most receiving a copy in their doctor's office (Table 8). The majority (82.5%) reported feeling motivated to act based on the pamphlet, which included a range of behaviors related to stroke risk screening or seeking information about stroke. Most (87.5%) also reported they were likely to schedule a stroke risk screening at least every year if they received the pamphlet in their child's doctor's office. Comments about the pamphlet content were also positive, with the majority endorsing that it was attention-getting (80.0%), interesting (78.8%), direct/to the point (87.5%), and useful information (93.8%). Half thought the most important message was “A Sickle Stroke Screen helps to see if my child is at risk of stroke.” Table 8 lists other messages deemed important by caregivers. Finally, respondents did not feel the pamphlet was difficult to understand (97.5%), and most reported liking the way the pamphlet looked (86.3%).

Table 8.

Caregiver Responses to Educational Pamphlet Survey (N = 80)

Item and response options	n (%)a
Have you seen this pamphlet before?
Yes	41 (51.3)
No	37 (46.3)
I don’t know	2 (2.5)
Where have you seen this pamphlet?b (n = 41)
My child's doctor or nurse gave or showed it to me	30 (73.2)
I got it in the SCD clinic	11 (26.8)
The person doing the Sickle Stroke Screen (TCD) gave it to me	10 (24.4)
Other	1 (2.4)
Do you remember receiving information about TCD/Sickle Stroke Screen before seeing this pamphlet?
Yes	37 (46.3)
No	31 (38.8)
I don’t know	12 (15)
What is your general reaction to the pamphlet?
I really like it	61 (76.3)
I think it is just okay	11 (13.8)
I don’t know or prefer not to respond	8 (10.1)
What do you think is the most important message of the pamphlet?
A Sickle Stroke Screen measures the speed of blood flow through the brain vessels	14 (17.5)
A Sickle Stroke Screen helps to see if my child is at risk of stroke	40 (50)
A child between the ages of 2 and 16 with SCA should get a Sickle Stroke	13 (16.3)
Screen every year
People with certain types of SCD are at greater risk for stroke	2 (2.5)
I should know or ask about the signs of stroke	5 (6.3)
The Sickle Stroke Screen lasts around 45–60 min	1 (1.3)
Results can be normal, abnormal, or conditional	2 (2.5)
I don’t know, prefer not to respond, or other	3 (3.6)
What do you think are the other important messages of the pamphlet?b
A Sickle Stroke Screen measures the speed of blood flow through the brain vessels	46 (57.5)
A Sickle Stroke Screen helps to see if my child is at risk of stroke	36 (45)
A child between the ages of 2 and 16 with SCA should get a Sickle Stroke Screen every year	38 (47.5)
People with certain types of SCD are at greater risk for stroke	28 (35)
I should know or ask about the signs of stroke	27 (33.8)
The Sickle Stroke Screen lasts around 45–60 min	15 (18.8)
Results can be normal, abnormal, or conditional	27 (33.8)
Does the pamphlet motivate you to do anything?
Yes	66 (82.5)
No	9 (11.3)
I don’t know or prefer not to respond	5 (6.2)
What does the pamphlet motivate you to do?b (n = 66)
Schedule a Sickle Stroke Screen	40 (75.7)
Ask my child's doctor or nurse about a Sickle Stroke Screen	23 (34.8)
Ask my child's doctor or nurse about risk of stroke	23 (34.8)
Ask my child's doctor or nurse about the signs and symptoms of stroke	34 (51.5)
Other	3 (4.5)
Why doesn’t the pamphlet motivate you to do anything? (n = 9)
The pamphlet has good information, but I don’t feel motivated to do anything	4 (44.4)
Prefer not to respond or other	5 (55.5)
If you received this pamphlet at your child’s doctor’s office, how likely would you be to schedule a Sickle Stroke Screen at least every year?
Very likely	70 (87.5)
Somewhat likely	5 (6.3)
Not too likely	3 (3.8)
I don’t know	2 (2.5)
About the pamphlet…
It is attention getting
Very much	64 (80)
A little	13 (16.3)
Prefer not to respond or missing	3 (3.8)
It is interesting
Very much	63 (78.8)
A little	15 (18.8)
Prefer not to respond or missing	2 (2.5)
It is direct/to the point
Very much	70 (87.5)
A little	8 (10)
Prefer not to respond or missing	2 (2.5)
It has useful information
Very much	75 (93.8)
A little	2 (2.5)
Not at all	1 (1.3)
Prefer not to respond or missing	2 (2.5)
Was there anything about the pamphlet that you found confusing or hard to understand?
No, nothing	78 (97.5)
Prefer not to respond or missing	2 (2.5)
Was there anything about the way the pamphlet looks that you didn’t like?b
No, nothing	69 (86.3)
Colors of the font	1 (1.3)
Picture of the child	3 (3.8)
Picture of the brain	1 (1.3)
Multicolored graphic of the brain	1 (1.3)
Sickle stroke screen logo	1 (1.3)
Layout of the information	1 (1.3)
Prefer not to respond or missing	5 (6.3)

Note. SCD = sickle cell disease; TCD = transcranial Doppler; SCA = sickle cell anemia.

^a Percentages across the rows do not always equal 100 due to rounding.

^b Respondents could select more than one option.

Discussion

This study described the development and process evaluation of an educational and rebranding initiative for improving stroke risk screening using TCD for pediatric SCA. Lessons learned from this process and recommendations for future educational efforts are described below.

Patient-Centered Education Is Essential

Patient-centered feedback is essential for improving the acceptability and adoption of guideline-focused education in SCD (Cronin et al., 2018, 2023). The educational initiative described in this study was guided by patient-reported barriers to understanding TCD and feedback from families. Surveys and interviews with providers and coordinators suggest the change in terminology and accompanying educational materials were well-received educational tools. Similarly, endpoint evaluation of the pamphlet suggested most families liked the education, understood the messaging, and were motivated to act. The latter results were particularly notable as they represented responses from caregivers across 10/13 DISPLACE sites.

Communication May Be Aided by Rebranding

Caregivers were essential in helping our team understand the need for a new name for stroke risk screening that was different from TCD and appropriately explained the test. Branding was new to our study team and involved outside expertise to develop a logo and infographic. In SCD, Crosby et al. (2013) similarly describe how partnering with outside consultants in digital and graphic design can enhance patient-centered communication and education efforts. Continued research on the utility of rebranding and other communication strategies would be helpful for understanding efficacy in educational efforts, particularly for specialty care conditions that may involve specific or complex tests that are less familiar to the public.

Flexibility in Modalities and Delivery of Information Is Important

We observed a range of approaches to education across sites (in part as the result of the pandemic and reduced in-person encounters). Flexibility in modalities of education allowed each site to tailor the educational effort to their own needs and to better integrate the materials into workflows, whether through written or verbal methods or via posters. Cronin et al. (2018) note that patients may also have preferences for educational modalities, so providing multiple formats can enhance patient-centered communication. Sites additionally commented on the importance of tailoring information to patient needs and highlighted that patients and families who were new to or unfamiliar with TCD were most likely to benefit from information. Finally, ensuring appropriate translation and cultural adaptation of materials is important, particularly at the outset of an educational campaign. A prior international study by Shahine et al. (2015) similarly describes the importance of both language and cultural adaptation of SCD information for families. A limitation of our study is that we did not provide translated materials until intervention midpoint, and sites struggled with adopting the new materials into existing workflows.

Consistency Can Be a Challenge When New Information and Processes Are Involved

Consistency was a primary barrier reported by providers and coordinators. Some sites observed improved consistency over time through persistence and trialing methods of education while others continued to face a range of challenges. The term TCD had also been engrained among providers for many years, and sites that were most successful expressed either a very strong commitment to using the new terminology and/or found ways of bridging the term TCD with Sickle Stroke Screen. Results from a study by Frei-Jones et al. (2009) similarly suggest that ongoing training efforts with providers may be needed to achieve downstream sustained improvements in guideline-informed care with patients with SCD.

Consistency can also be a challenge when many different individuals are involved in education. As seen in DISPLACE, SCD providers, nurses, and advanced practice providers all had essential roles in education in the context of specialty care, and their input into the educational needs of patients, the development of educational materials, and the process evaluation of this study were important for understanding challenges and successes. We did not collect opinions from radiology providers and technicians, who may have had additional input into the design or dissemination of the materials, though some sites reported coordination with radiology during the trial.

Complex Health Care Systems and Unexpected Events Can Impede Education

Educational campaigns that involve providers may face challenges related to complex healthcare systems and can create an added provider burden. These challenges were compounded by the pandemic in this study, which resulted in reduced in-person encounters and increased stress and complexity for providers and clinic staff. Despite these challenges, about half of caregivers surveyed reported receiving educational materials in clinic during the study period. Future studies may consider adding a tracking element to interventions to better understand the reach and impact of educational efforts.

Study Limitations

Our process evaluation has methodological limitations that are important to note. First, due to the time-limited nature of the mid- and endpoint assessments, we chose to focus on provider and coordinator surveys and interviews, with caregivers completing only surveys at endpoint. Families were an essential part of the development of the educational initiative; however, interviews with additional caregivers during the implementation trial may have yielded additional information. In addition, to reduce the burden on sites during the trial, we chose not to have sites recruit patients for surveys and instead focused on caregivers, which may have limited feedback received at the endpoint. Only site providers (or designated personnel) and coordinators implementing the intervention were eligible for the process evaluation and sites who were part of the trial may have had greater resources than those of sites outside of the trial. Radiology providers and technicians were also not included in the study. Finally, as noted above, the pandemic was a significant event that altered how sites disseminated education to patients.

Conclusion

The results of this study suggested integrating a carefully designed educational component into multicomponent interventions may be beneficial in improving the uptake of disease-specific tests, such as stroke risk screening. Findings illustrated important processes, barriers, and facilitators to consider and address during iterative approaches to implementing an educational intervention. Feedback from patients/caregivers, providers, and coordinators supported positive receipt of materials and an indication of their utility toward improving rates of guideline-based screening. Future research might focus on translating processes presented here to other aspects of SCD care or to other conditions and could include approaches to track the distribution and uptake of education in addition to obtaining feedback from multiple perspectives.