Developing Patient-Refined Messaging for Follow-Up Colonoscopy After Abnormal Fecal Testing in Hispanic Communities: Key Learnings from Virtual Boot Camp Translation

Abstract

Introduction:

Colorectal cancer (CRC) is a leading cause of cancer death in the US. Screening by fecal immunochemical test (FIT) is a strategy to lower CRC rates. Unfortunately, only half of patients with an abnormal FIT result complete the follow-up colonoscopy, an essential component of screening. We used virtual Boot Camp Translation (BCT), to elicit input from partners to develop messaging/materials to motivate patients to complete a follow-up colonoscopy.

Methods:

Participants were Hispanic, ages 50 to 75 years, and Spanish-speaking. All materials were developed in English and Spanish. The first meeting included expert presentations that addressed colorectal health. The two follow-up sessions obtained feedback on messaging/materials developed based on themes from the first meeting.

Results:

Ten participants attended the first meeting and 8 attended the follow-up sessions. The two key barriers to follow-up colonoscopy after abnormal FIT noted by participants were 1) lack of colonoscopy awareness and 2) fear of the colonoscopy procedure. We learned that participants valued simple messaging to increase knowledge and alleviate concerns, patient-friendly outreach materials, and increased access to health information.

Conclusion:

Using virtual BCT, we included participant feedback to design culturally relevant health messages to promote follow-up colonoscopy after abnormal fecal testing among Hispanic patients served by community clinics.

Introduction

Colorectal cancer (CRC) is a leading cause of cancer-related death in the United States.¹ It is estimated that approximately 153,000 people will be diagnosed with CRC and almost 53,000 will die from the disease in 2023, including 19,550 cases and 3,750 deaths of people under the age of 50.¹ Routine screening is effective in reducing the incidence and mortality of CRC by detecting precancerous polyps or cancer at early treatable stages.² Studies have shown that screening by annual fecal immunochemical test (FIT) is an accessible and cost-effective strategy to lower CRC incidence and mortality.^3-8 However, this mode of screening requires that individuals with an abnormal fecal test result obtain a follow-up colonoscopy.^9,10 Unfortunately, patients with an abnormal FIT result often fail to complete this essential component of the two-part screening pathway, negating any benefit of FIT screening.^11,12 Rates of follow-up colonoscopy completion are particularly low among safety net practices, such as community health centers, with rates ranging from 18 to 52%.^13,14

Hispanic adults and uninsured populations have particularly low participation in follow-up colonoscopy.^15-19 Factors contributing to lower rates among Hispanics include low awareness of the need for follow-up colonoscopy after fecal testing, a general lack of understanding about the colonoscopy procedure, and limited availability of culturally appropriate patient health information.^20,21 When patients are unable to understand a health condition and related screening options, they experience difficulties engaging in meaningful conversation with a health care provider, choosing appropriate health action, or participating in recommended screenings.

To address the need for culturally tailored communications to increase colonoscopy completion after abnormal fecal testing, and to understand patient preferences for messages and materials, we implemented Boot Camp Translation (BCT) in a Spanish-speaking Hispanic population as part of a larger study to improve rates of colorectal cancer screening in patients seeking care at a federally qualified health center (FQHC). BCT is a validated method of engaging patients and clinical staff to translate evidence-based recommendations in ways that are understood and important to communities.²² Complicated medical terminology can be a barrier to understanding health recommendations and treatment options, making BCT an effective participatory approach to informing communication between patients and their care delivery team and improving health outcomes.^22-26

We adapted and designed BCT to answer two key questions: 1) What should we emphasize in our messaging to encourage follow-up colonoscopy completion after an abnormal fecal test result? 2) When and how should we communicate these messages to patients? Due to the current COVID-19 pandemic landscape, we conducted this community-based participatory process on a digital platform. This paper describes the key learnings from this virtual BCT process.

Methods

This project is a partnership between XXXXSS (Portland, OR) and a large independent FQHC in Southern California with 27 medical clinics serving over 300,000 patients. The majority of the FQHC’s patients are Hispanic (82%), and forty percent of these patients prefer speaking Spanish. The parent study was approved by the XXXXSS Institutional Review Board (Protocol number: 00000405), with ceding agreements from relevant institutions. Due to the minimal risk of the BCT process, it is not considered research and any requirements of informed consent are waived. The parent study is registered on ClinicalTrials.gov (NCT03167125), and the full study protocol has been published elsewhere.²⁷

Boot Camp Translation Approach.

We used BCT to identify important themes and preferred messages for varying modes of communications about follow-up colonoscopy after abnormal fecal testing. BCT is a method for engaging community members to translate health information into ideas, messages and materials that resonate with priority community members.²² The approach unites the community, researchers, and medical experts to address local health concerns.²² BCT uses a participatory process that generally incorporates an iterative and flexible schedule of in-person meetings combined with short follow-up phone calls over the course of several months (up to a year) depending on the complexity of the health topic.^22,28 Our team shortened the overall duration of the process to fit the cultural context of the community and maximize participant involvement. Additionally, given the COVID-19 pandemic context, we adapted the BCT approach for a virtual experience. The sessions were hosted on Zoom (Zoom Video Communications, San Jose, CA), the FQHC’s preferred virtual platform due to HIPAA compliancy and patient usability.

Study Procedures.

Eligible patient participants were Hispanic, ages 50 to 75 years, Spanish-speaking, and willing to participate in three virtual sessions. Several clinic staff were included in the process as well. Recruitment and BCT materials were developed in both English and Spanish, but all three sessions were held in Spanish consistent with patient preferences. Participants were given up to $150 in gift cards for participating in the overall BCT process ($100 for the initial three-hour session, $25 each for two follow-up sessions). BCT activities occurred between May 8 – June 5, 2021 (all three sessions took place on a Saturday morning) and the first meeting lasted 3 hours while each of the latter two meetings lasted one hour. The first meeting included expert presentations that addressed colon health, colorectal cancer, screening methods, and specific steps to getting a colonoscopy. Additionally, participants learned about patient barriers and effective messaging to improve Hispanic screening participation and engaged in small group discussions on effective messaging for common patient scenarios about follow-up colonoscopy. The two follow-up sessions (one hour each) were designed to review learnings from the first session, provide an opportunity for participants to reflect on their newfound knowledge, and obtain feedback on messaging and materials developed based on the emerging themes from the first meeting. Please refer to Figure 1.

Figure 1.

Virtual BCT process. BCT=Boot Camp Translation.

The BCT study team was comprised of the study principal investigator, a co-investigator, one Spanish-speaking BCT facilitator, and four project personnel. The BCT facilitator in this study was bilingual in English and Spanish, had experience facilitating patient engagement activities with diverse populations, had received BCT facilitator training (see www.bootcamptranslation.org), and had led prior BCT sessions. Using a convenience sampling method, one FQHC staff member mailed bilingual recruitment flyers to eligible patients and conducted follow-up phone calls to finalize recruitment. This individual functioned as the main point of contact (POC) for all patient correspondence, which included 1) mailing a welcome box to enrolled participants with presentation materials, information about study logistics, snacks and stress toys, 2) conducting follow-up calls to assist with Zoom connectivity as needed, 3) sending text reminders about the session, and 4) providing technology support during BCT. Additional information regarding the application of this virtual BCT community engagement approach is reported elsewhere.²⁹

Results

Study Population.

The POC mailed bilingual (English/Spanish) recruitment flyers to 120 eligible participants and reached 90 individuals by either speaking directly with individuals or leaving messages on active phone numbers. Fifteen adults, including twelve community members and three clinic staff from the FQHC, were successfully enrolled in BCT. However, only ten attended session #1 (seven community members and three clinic staff), seven attended session #2 (four community members and three clinic staff), and eight attended session #3 (five community members and three clinic staff). Reasons for missing sessions varied, including misunderstanding the instructions and going in-person to the clinic or starting a new job during the session timeline. All enrolled participants identified as women between the ages of 57-67 and stated Spanish as their preferred language. An evaluation of the participant experience is reported elsewhere.²⁹

Key Learnings.

During the first BCT 3-hour session, participants identified key barriers to follow-up colonoscopy after abnormal fecal testing and brainstormed elements they desired in messaging and materials. Patient barriers, behavior change strategies, tailored messages, and final materials are outlined in Table 1 and summarized below. The two key barriers noted by participants were 1) lack of colonoscopy awareness and 2) fear of the colonoscopy procedure.

Table 1.

BCT Learnings: Patient Barriers, Behavior Change Strategies, Tailored Messages, and Materials Development

Patient-Level Barriers “Patient Quotes”	Behavior Change Strategies	Tailored Messages Developed by Patients	Final Materials
Lack of colonoscopy awareness “I have told [my husband] that we have to be more careful, so it is caught in time, my husband is 72 years old, and he has never done a [colonoscopy].” “We need to add something [to the instructions] about the sedation and that the colonoscopy doesn’t hurt…” “Let them know that they don’t feel it, there is no pain and that [the colonoscopy] does not last long. It's better to prevent.” "I did not know how polyps were removed until now. People think that the only way to remove polyps is by surgery and imagine that it is a big procedure. People think that taking a couple of days off work is required, and that is not true." “Let them know that even if they feel fine, they may see cancer…”	Build health literacy about the importance of a follow-up colonoscopy after an abnormal FIT result Use statistics to emphasize the importance and urgency of getting screened Keep descriptions simple and clear	9 out of 10 people survive when colorectal cancer screening happens early. A colonoscopy is an exam that checks for problems in your colon (large intestine). It’s a way for the doctor to look at your colon. Polyps do not contain nerves, so you won’t feel pain when they’re removed. A colonoscopy usually takes 30-60 minutes, and you will be offered medication to help you relax or sleep. The doctor looks for polyps (small growths) which can be removed to prevent colon cancer. A colonoscopy can find and remove polyps in your colon before they become cancer. Men and Women need to get tested for colon cancer starting age 45 even if they feel healthy.	Fact Sheet Colonoscopy After Abnormal FIT Short Animated Video What is a Colonoscopy? (English) What is a Colonoscopy? (Spanish)
Fear of colonoscopy procedure "Everything is about fear. I was fearful, I gave myself therapy. I closed my eyes and quickly woke up. It didn't hurt at all, and I even thought that they hadn't done [the colonoscopy]. I even cried when they told me I had nothing. They don't give you the opportunity to learn more about the process, express your fears, and ease your concerns.” “A video or paper that talks about the preparation … so it’s not as scary and you see why you need to do it. For example, avoid red foods and eat gelatin. Explains what you can and can’t eat.”	Provide education about the colonoscopy procedure and bowel preparation to boost confidence and set expectations Information should be easy-to-understand Information should explain why certain steps that may appear challenging are required and necessary	COLONOSCOPY A colonoscopy usually takes 30-60 minutes, and you will be offered medication to help you relax or sleep. During the procedure, the doctor looks for polyps (small growths) which can be removed to prevent colon cancer. Polyps are usually not cancerous, but they can change into cancer, so they need to be removed. Polyps do not contain nerves, so you won’t feel pain when they’re removed. BOWEL PREPARATION A successful colonoscopy depends on a successful prep! A poor prep may result in a missed polyp, a longer procedure, or even a repeat colonoscopy. To make sure your doctor can see possible problems, your colon must be completely clean. Follow your bowel prep instructions. During your bowel prep, do not eat nuts or seeds because they take a long time to digest and there shouldn’t be any pieces of food in the colon during the colonoscopy. During your bowel prep, do not eat/drink red and purple foods and drinks because they stain the colon and make it difficult for the doctor to complete the colonoscopy.	Fact Sheets Preparing for a Colonoscopy Bowel Prep: GoLYTELY® Bowel Prep: MiraLAX® Bowel Prep: SUPREP® Short Animated Video What is a Colonoscopy? (English) What is a Colonoscopy? (Spanish)

Lack of colonoscopy awareness.

First, there was a lack of knowledge and awareness about the colonoscopy procedure. Participants stressed the need for more education on why a colonoscopy is needed following an abnormal FIT result. Furthermore, individuals wanted to learn more about the colonoscopy procedure itself (i.e., why is it important, what is the procedure, what is a polyp, how to complete the bowel preparation, and why a certain diet must be followed as part of bowel preparation). Participants stressed that messages should be simple and clear, include CRC screening statistics, use family as a motivator for screening, and easily shareable outside a clinic patient portal. Based on learnings during the main BCT session, we crafted messages that were subsequently refined by the patients during the follow-up session.

Examples of patient-inspired phrasing include: 1) 9 out of 10 people survive when colorectal cancer screening happens early. 2) A colonoscopy is an exam that checks for problems in your colon (large intestine). It’s a way for the doctor to look at your colon. 3) The doctor looks for polyps (small growths) which can be removed to prevent colon cancer. 4) A colonoscopy can find and remove polyps in your colon before they become cancer. These messages were included in the Colonoscopy After Abnormal FIT fact sheet created for FQHC patients.

Fear of colonoscopy procedure.

Second, participants described experiencing fear, which can include fear of the procedure, the bowel preparation, and an unfavorable result. Fear can lead to procrastination, which according to participants, can be addressed through education and support. Participants viewed fear as being strongly tied to needing information about the colonoscopy and bowel preparation process. For example, one participant mentioned “I was scared…I did not know that when I turned 50 years old, I had to do this test…it’s good that I’m here learning.” Another participant mentioned being afraid of the procedure because she didn’t have enough information about colorectal cancer screening stating, “I was scared before because I didn’t know what this exam was about. I thought it wasn’t for me because I didn’t have colon cancer.” Providing much needed education helps boost patient confidence, break down myths, and alleviate concerns by setting expectations about the procedure. Information should be easy-to-understand and explain why certain steps need to be taken.

Examples of patient-directed messaging about the colonoscopy procedure include: 1) A colonoscopy usually takes 30-60 minutes, and you will be offered medication to help you relax or sleep. 2) During the procedure, the doctor looks for polyps (small growths) which can be removed to prevent colon cancer. 3) Polyps are usually not cancerous, but they can change into cancer, so they need to be removed. Polyps do not contain nerves, so you won’t feel pain when they’re removed.

BCT participants recommended also developing messages about bowel preparation and being clear as to why it is important to the success of the procedure: 1) A successful colonoscopy depends on a successful prep! A poor prep may result in a missed polyp, a longer procedure, or even a repeat colonoscopy. 2) To make sure your doctor can see possible problems, your colon must be completely clean. Follow your bowel prep instructions. Additionally, patients asked for materials to provide details to explain why certain bowel preparation steps are required. For example, 1) During your bowel prep, do not eat nuts or seeds because they take a long time to digest and there shouldn’t be any pieces of food in the colon during the colonoscopy. 2) During your bowel prep, do not consume red and purple foods and drinks because they stain the colon and make it difficult for the doctor to complete the colonoscopy.

In general, participants also expressed the need for health information that meets the appropriate health literacy level. Participants suggested reducing text, replacing difficult words, describing the colonoscopy in simpler terms, and adding visuals (e.g., photos, pictures) to illustrate the procedure. Easy-to-understand visuals help patients mentally prepare for and process the steps of the colonoscopy procedure and may alleviate fears and concerns. Patients also advocated for easy-to-understand materials outlining the steps of the bowel preparation, including examples of meals that can be eaten as part of the low fiber diet.

Individuals desired education in a variety of formats including 1-on-1 education from providers, informational fact sheets, and short videos shown in clinic or sent by text. Some asked for health education classes sponsored by the clinic to teach patients about a variety of health issues not limited to CRC, but also diabetes, heart health, and other health issues for which Hispanics face a relatively high risk. Participants noted that an invitation to a CRC health education session could be sent to patients when they receive their first FIT kit. Expanding patient outreach modalities also helps broaden reach and accommodates varying learning styles and educational backgrounds.

Final Materials.

After the first BCT 3-hour meeting, our study team conducted an internal debrief session to begin drafting materials and messaging. We met with our department’s senior graphic designer to create a first draft of materials, applying key learnings from the 3-hour session. Participants were then asked to provide suggestions for refining bilingual (English and Spanish) messaging and materials during the two follow-up sessions. Final materials and videos are described below and available at www.mailedfit.org.

Print Materials.

We developed four educational fact sheets: 1) Colonoscopy After Abnormal FIT, 2) Preparing for a Colonoscopy, 3) Bowel Preparation: GoLYTELY^®, and 4) Bowel Preparation: Miralax^®. (Links to materials are available in Table 1.) The first document, a two-sided bilingual fact sheet, presented informative statistics about colon cancer diagnoses and survival rates, and answered the following questions: “What is a colonoscopy? Why do I need a colonoscopy? How do I prepare for a colonoscopy?” The second document provides a road map outlining the steps for obtaining a colonoscopy. Additionally, it lists food and drinks that are appropriate for the low fiber and clear liquid diets and summarizes general instructions for bowel preparation. Finally, each of the remaining two fact sheets detail the specific bowel preparation steps for two different solutions. We focused on GoLYTELY^® and Miralax^® which were the two most popular preparation medications prescribed by gastroenterologists for patients in the clinic system.

Videos.

To expand patient outreach modalities beyond print media, we developed a library of animated Spanish-language videos. BCT participants suggested animation works well for CRC education especially when it comes to how colon cancer develops, what is a colonoscopy, and how to complete bowel prep. Our study team collaborated with the XXXXSS to translate their animated patient-facing videos into Spanish. Additionally, we developed two new videos: 1) FIT kit instructions for the InSure^® ONE^™ test that included information regarding the two-step screening process for FIT, and 2) what to expect before, during and after a colonoscopy. (Links to videos are available in Table 1.) The library of English and Spanish videos includes 11 videos ranging from 30 seconds to three minutes long. They cover a variety of topics such as how CRC develops, knowing the signs and risk factors of CRC, and when to begin screening.

Discussion

In response to low colonoscopy screening rates after abnormal fecal testing among Hispanic patients at a large California FQHC, we conducted BCT to engage Spanish-speaking patients in developing culturally relevant messaging and materials to promote colonoscopy completion. We learned that participants valued clear and simple messaging to increase colonoscopy awareness, supportive messaging to address patient concerns over fear of the procedure, patient-friendly outreach materials that meet appropriate literacy levels, and increased access to and visibility of health information. To our knowledge, there is limited research on Spanish-language BCT sessions for the CRC topic area. Each population has a unique cultural, linguistic, social, and economic context that impacts how individuals receive and act on health information.^30-32 Our learnings informed the development of patient-facing materials which can be used, or further adapted, to address the health education needs of Spanish-speaking patients.

Our finding that low awareness and fear deterred participants from obtaining a follow-up colonoscopy was consistent with prior qualitative research conducted by our team. XXXXSS and colleagues demonstrated that the greatest challenges to completing a colonoscopy were low awareness of why a colonoscopy was needed, fear, cost, and lack of reliable transportation.³³ Using BCT, we were able to translate these barriers into messages to help participants overcome them. We adapted BCT for a virtual platform to sustain and enhance community engagement during the COVID pandemic.

Our team conducted a previous BCT session to engage Hispanic community members in refining messages and formats of colorectal cancer screening reminders for the clinic’s mailed FIT outreach program. Key themes distilled from this previous work included increasing awareness that screening can prevent CRC, stressing the urgency of screening, emphasizing the motivating influence of family, and using personalized messages from the practice such as ‘I’ or ‘we’ statements in letters or automated phone call reminders delivered by humans.³⁴ The main concept that overlapped between the two BCT processes was the issue of awareness and knowledge. In both cases, patients desired more information about the importance of screening, the different modalities, and details about what to expect for different screening options. Additionally, ensuring that the information is not only available through various channels (i.e., print media, digital media), but also accessible from a health literacy standpoint is imperative.

Patients desired clear and concise messages that use statistics and visuals to illustrate a point. Using the concept of family as a motivator also adds value to the message. Empowering patients with accurate, precise, and easy-to-understand information helps them take control of their health and make informed decisions. When patients understand a health condition and the need for screening, they become advocates for their own health, participate in conversations with their provider, and adhere to recommended screening measures.² Explaining the steps of a colonoscopy alleviates fear among patients by setting expectations and addressing questions related to bowel preparation, pain expectations, timing of procedure, and recovery. This helps break down myths and misconceptions about the colonoscopy.

Also, expanding patient outreach modalities increases access to and visibility of health information. It can help broaden reach and accommodate different learning styles and educational backgrounds. For example, some patients may prefer print materials for describing a colonoscopy procedure while others may opt for short videos to review. Some BCT participants preferred the idea of receiving videos via text links so they could easily view the information and share with family and friends. The clinic system plans to incorporate this feedback by sharing the print materials and videos through a variety of dissemination channels: 1) clinic lobby, waiting room, exam room, 2) informational booths, 3) patient advocates, and 4) via text message.

Finally, it is important to note that accurate health information disseminated by clinics helps support healthy lifestyle behaviors, improve decision-making about health care, and build resilience to misinformation.³⁵ Health misinformation undermines public health efforts and deters adherence to evidence-based guidelines. Efforts are needed to ensure that health messages are evidence-based, accurate, inclusive, culturally tailored, and delivered by trusted sources.³⁵

Strengths.

First, BCT provided a rich and ideal platform to engage patients in the development of messaging and patient education materials for follow-up colonoscopy after abnormal fecal testing. The expert presentations delivered during the main 3-hour BCT session gave participants an opportunity to learn about CRC health and screening, and consequently empowered them to take an active and informed role in discussions about messaging. This educational component allowed the group to have an effective conversation about screening, specifically colonoscopy completion and share feedback to inform the development of culturally tailored materials.

Another strength of our study was the ability to deliver a Spanish-led BCT for our priority sample of Spanish-speaking Hispanic patients. Evaluation results indicated that participants were engaged and satisfied throughout the sessions, provided feedback on messaging and materials, and overall enjoyed the virtual BCT method.²⁹

Limitations.

It should be noted that the adaptation of BCT for a virtual setting due to the pandemic posed some challenges in engaging older Hispanic adults with limited access to digital communication platforms. Some potential participants were unable to participate due to lack of access to a computer, smartphone or Zoom. Consequently, patients who were able to participate in the Zoom sessions were either experienced in using video conferencing platforms from their smartphone or tablet, or had household members who could assist them.²⁹ Despite the challenges with adapting this methodology for a virtual setting and the possibility of selection bias, our study demonstrated that BCT can be successfully delivered on a digital platform and underscored the importance of having an assigned POC address participant comfort with technology and ensure accessibility.²⁹

Finally, although we met our target recruitment numbers, the study included only urban women. As we continue to use these approaches, we should consider including more participants in these sessions and taking advantage of in-person meetings, when possible, to lessen any technological barriers. Future research could further test our messages and materials across Hispanic subgroups, defined by sex or country of origin.

Conclusion

BCT is an effective community engagement tool in promoting public health efforts by translating scientific information into messages and materials that are understandable and meaningful to community members. The approach honors the local and cultural aspects of community within the context of evidence-based health care. BCT findings are not intended to be generalizable to the larger population but rather tailored to the specific needs of local communities. Our study contributes to a growing body of research on how to conduct patient engagement activities using virtual platforms and create messaging and materials that reflect FQHC patient experiences. We recommend ongoing public health focus on the use of virtual platforms for community engaged work and continued research on the dissemination of credible and easily accessible information for populations that need it most.