Acceptability of Patient Navigation to Promote Follow-up Colonoscopy

Abstract

Objectives:

Patient navigation can improve participation in colorectal cancer (CRC) screening, but little is known about patients’ experiences with navigation. Here we report patients’ experience with navigation for colonoscopy following an abnormal stool-test result.

Methods:

We conducted qualitative interviews among patients due for follow-up colonoscopy after an abnormal stool-test result, and who received patient navigation. Patients were enrolled in PRECISE, a randomized clinical trial comparing patient navigation vs. usual care in a large federally qualified health center. Telephone interviews were in English or Spanish among a sub-sample of patients. Recordings were transcribed, coded, and analyzed using a constant comparative approach.

Results:

We completed 25 interviews (12 in Spanish and 13 in English). All patients perceived navigation as helpful. Spanish-preferring respondents had more barriers and needed support through the colonoscopy process. Navigated patients valued assistance with scheduling and having a single point of contact for bowel preparation questions. Patients suggested making sure navigators are well-versed in the colonoscopy experience, timely with calls, have access to local resources to help resolve barriers, and expand outreach to weekends and evenings.

Conclusions:

Patients who received navigation for follow-up colonoscopy perceived it as acceptable, helpful, and reassuring. Patients recommended the service continue and suggested improvements.

INTRODUCTION

Patient navigation (PN) is recommended by the Community Guide for Preventive Services and can improve participation in colorectal cancer (CRC) screening and follow-up. ¹ A recent meta-analysis of 28 studies showed a 64% increase in CRC screening among groups receiving PN compared to usual care. ² Despite the demonstrated effectiveness of PN, ^2–4 little is known about patients’ experience of receiving navigation. Further understanding of patients’ experience of navigation may help guide future PN programs.

PN works by helping people overcome the medical, financial, and emotional barriers they experience during cancer care. Patient navigators can help patients complete next steps by assessing and addressing barriers. For CRC screening and follow-up, these barriers include lack of knowledge about why screening is needed, health insurance-related challenges, fear or anxiety about the bowel preparation and procedure, scheduling and logistical challenges, and a belief that cancer leads to death. ^5–10

Prior literature on patients’ experience with navigation is scarce. A meta-analysis of five randomized controlled studies on the effect of PN on satisfaction with cancer care reported a statistically significant higher satisfaction among patients receiving PN versus usual care. ¹¹ A Boston-based study that analyzed navigator notes and patient surveys from a CRC- screening-focused PN program reported that patients valued the navigators, especially for providing emotional and peer support and for clearly explaining screening procedures and bowel preparation. ¹² Yet, data are scarce on overall patient experience, and almost nothing is known about experiences among patients whose preferred language is Spanish.

Here, we report on the experiences of a sub-set patients with an abnormal stool-based test (fecal immunochemical test, FIT) who received PN as part of the main trial, Predicting and Addressing Non-Adherence to Follow-up Colonoscopy in Community Settings (PRECISE ^13,14. We compare experiences receiving navigation among patients whose preferred language is English (EL) and patients whose preferred language is Spanish (SL). Our findings can inform efforts to improve patients’ experiences and successfully implement future PN programs.

METHODS

Background and setting

The main PRECISE study was conducted at a Washington State Federally Qualified Health Center (FQHC) serving more than 300,000 patients, 37% of whom identified as Hispanic. PRECISE tested the implementation and effectiveness of a telephone-based program of PN to improve follow-up colonoscopy completion following an abnormal FIT result. All study protocols were approved by Kaiser Permanente Northwest’s Institutional Review Board (Protocol number: STUDY00000779), with ceding agreements from relevant institutions. The study is registered on ClinicalTrials.gov (NCT03925883).

The PRECISE trial protocol is described in detail elsewhere. ^13,14 Briefly, eligible patients were aged 50–75, had an abnormal FIT result in the previous month, and were due for a follow-up colonoscopy. Patients were randomized to the intervention (patient navigation) or control (usual care) arms. Primary outcomes were measured by colonoscopy completion within one year of an abnormal FIT result. For the intervention, navigators were trained on a 6-topic telephone outreach protocol (Fig 1), including: (1) initial patient engagement to assess interest and barriers to colonoscopy scheduling and completion, (2) continued barrier assessment and resolution, (3) bowel preparation review, (4) bowel preparation check-in and assessment, (5) colonoscopy appointment check-in, and (6) confirmation of colonoscopy completion as well as results receipt and understanding of rescreening interval. ¹⁵ The original program was delivered by phone by a registered nurse and the program offered free colonoscopy services (through a Centers for Disease Control funded program). We adapted the PRECISE program by eliminating the clinical credential requirement, allowing text messaging for pre-call notifications or in place of phone calls for topic areas 4 and 5 (for patients who preferred text communication), and by relying on available community resources (e.g., ride services) to support patients with their colonoscopy completion.

Figure 1.

Patient Navigation Protocol

As part of a sub-aim for the main PRECISE study, we conducted telephone interviews with sub-set of patients to explore their experiences of navigation, including: overall acceptability of the program; barriers assessed and resources offered; experience completing their colonoscopy; perceived helpfulness of the navigation program; and areas for improvement. Two masters-level qualitatively trained and experienced study staff (JLS, JSR) led the data collection and analysis process for the qualitative assessment. Another study staff member (KAV), trained by JLS and JSR in qualitative interviewing and coding, provided additional support.

Recruitment

We aimed to conduct in-depth telephone interviews with at least 25 patients, a number we have found in our prior qualitative studies and from the qualitative literature as analytically sufficient for identifying common experiences and themes. ^16–17 We engaged in a purposeful, rolling recruitment process for the interviews. The PRECISE navigator would identify a list of eligible patients to interview after they completed both their navigation and follow-up colonoscopy. During the patient’s final navigation outreach call, the PRECISE navigator informed the patient that study staff would be contacting them with a request for an interview, which would be voluntary. This rolling recruitment process led to the identification of 72 possible patients to recruit for an interview. As patients were identified by the PRECISE navigator, qualitative staff (JLS, JSR, KAV) would then mail recruitment letters and consent information in Spanish or English, depending on preferred language noted, and called patients a week later to further describe the interview. For those interested, the interviewers verbally reviewed the study information sheet (waiver of signed consent was approved), answered any patient questions about the interviews, and captured verbal consent on the excel recruitment tracking sheet. Following the interview, all patients were mailed a $20 gift card for their time. To better understand patient perspectives on the navigation experience, we chose to oversample patients identified by the navigator as having barriers or needs to address for colonoscopy completion (versus patients who required minimal support).

Data collection

The semi structured, open-ended interview guide (see supporting information) was developed by JLS and JSR and was informed by previous qualitative interviews⁸ and the overall expertise of the PRECISE study team. Interviews were conducted by telephone in the patient’s preferred language (Spanish or English) from January 2020 to May 2022, with the goal of conducting interviews shortly after patients completed a colonoscopy. Due to the COVID-19 pandemic, the PRECISE trial was paused from March to August 2020, and during this time no navigation services or interviews took place. Interviews were 45–60 minutes, audio recorded, and transcribed verbatim. Patient interviews conducted in Spanish (by JSR, a trained bilingual and bicultural interviewer) were transcribed into the source language of Spanish, to ensure we conveyed the experience of the patient as accurately as possible.

Analysis

A constant comparative analysis approach was employed using open-coding techniques^18–23 to summarize interview data. First, a code book was developed by having each member of the analysis team (JLS, JSR, KAV) review a subset of transcripts and mark passages of text with codes indicating its content. The team compared coding notes, discussed areas of disagreement within and between the EL and SL transcripts, and together developed a coding scheme for all transcripts. Transcripts were entered into NVivo 12.0, a qualitative analysis software program used to electronically code and manage data and generate reports of coded text for ongoing thematic analysis. ²⁴ Patient transcripts were then coded by the analysis team working together through an iterative process, including meeting regularly to discuss application of the codes and to make refinements as needed. English language transcripts were coded by JLS and KAV, and Spanish language transcripts were coded and reviewed by JRS and KAV (bilingual coders) to facilitate understanding (e.g., regional and cultural variations and idiomatic phrases). Using query functions of NVivo, we produced reports of coded text representing topical areas explored in the interviews (e.g., navigation helpfulness by preferred language, SL or EL). Next, two study team members (JLS, JSR) repeatedly reviewed these code reports and created initial analytic summaries, which were used to identify preliminary themes. We continued to review and summarize reports to explore and compare variation within each thematic category and by language preference, also identifying quotes to illustrate findings. SL thematic reports were translated by JSR and KAV. If the direct translation did not capture the interviewees’ intended meaning, contextual meaning was included in parenthesis. The full analytic process took approximately 12 months, resulting in a final set of thematic summaries used as the basis for this paper. Additionally, we employed the Consolidated Criteria for Reporting Qualitative Research (COREQ) to guide rigor in presentation of our findings. ²⁵

Additional data:

Study recruitment and intervention data were collected and maintained using the Research Electronic Data Capture (REDCap) tool. REDCap is a secure, web-based software platform designed to support data capture. ²⁶ For the PRECISE study, it provided an interface for navigators to document recruitment, outreach, and engagement with patients. Navigators could indicate in open text field options in REDCap types of barriers patients mentioned (e.g., lack of transportation to colonoscopy appointment) and if/how these challenges were addressed. Thus, to supplement our interview data, the qualitative team extracted navigator notes from REDCap for each interviewed patient to further understand their navigation experience. Review of the navigator notes enriched patient interview data and provided a source of triangulation^19,21,27 of patient experiences reported during the interviews.

We organize our findings by the following main areas: 1) description of patient characteristics; 2) general reaction to program and navigator support; 3) overall helpfulness of program and assistance with overcoming barriers; and 4) experience completing the colonoscopy and future actions, including suggestions for improving the program. Within these results we provide representative quotes with descriptive tags (ID, language, sex) and note when a topic area came up more or less often for SL or EL patients.

RESULTS

Patient characteristics

We completed 25 interviews (12 SL and 13 EL). Of the 72 recruitment letters; 5 patients were unreachable because of a disconnected number, 9 actively declined the interview, and 33 did not respond after multiple attempts. Of the interviewed patients, 52% were female (7EL and 6SL). Most patients, 68%, identified as White (12 EL and 5 SL) and had an average age of 59 (range 50–73). Nine patients (4 EL and 5 SL) indicated this was the first time they had ever completed a FIT for CRC screening. Seventeen (68%) of patients (9EL and 8SL) self-reported this was their first colonoscopy experience with two of these patients (1EL and 1SL) describing how they did not know what a colonoscopy was prior to this study and navigation outreach. As one participant described, “First of all, what is that, because I didn’t know what a colonoscopy was or any of that” (110, SL, female). Approximately half (52%) had 6 or more outreaches from the navigator to aid in their colonoscopy completion, and 40% completed their colonoscopy within 60 days of their abnormal FIT results (Table 1).

Table 1:

Patient Description

Descriptors*	Spanish-language patients (n = 12) n (%)	English-language patients (n = 13) n (%)	Totals (N = 25) N (%)
Sex
Female	6 (50%)	7 (54%)	13 (52%)
Male	6 (50%)	6 (46%)	12 (48%)
Age
Average Age (range)	59 (50–73)	59 (51–66)	59 (50–73)
Race
African American/Black	0 (0%)	1 (8%)	1 (4%)
Hispanic/Latino	1 (8%)	0 (0%)	1 (4%)
Multi-racial	3 (25%)	0 (0%)	3 (12%)
Other race	3 (25%)	0 (0%)	3 (12%)
White	5 (42%)	12 (92%)	17 (68%)
Time of abnormal FIT to completed colonoscopy (range 33 – 157 days)**
30 to 60 days	6 (50%)	4 (31%)	10 (40%)
61 to 90 days	1 (8%)	5 (38%)	6 (24%)
91 to 120 days	3 (25%)	2 (15%)	5 (20%)
121 days or more	2 (17%)	2 (15%)	4 (16%)
Number of navigation outreaches to patients (range 3 to 17)**
3 to 5 outreaches	7 (58%)	5 (38%)	12 (48%)
6 or more outreaches	5 (42%)	8 (54%)	13 (52%)

^*Reported from the electronic health record of the patients’ Federally Qualified Health Center;

^**reported from REDCap navigation tracking tool; FIT=Fecal immunochemical test

General reaction to working with the navigator

Initial reactions:

Most patients (92%; 23) reported that the initial outreach from the navigator, including an introductory letter followed by a first call to explain the program, was friendly, informative, and clear regarding the purpose of the program. One patient did report some initial hesitancy, stating “In the beginning I wasn’t sure about this outreach and whether I wanted to be involved that way - it felt a little bit intimidating. But after one or two calls later [from PN] I became more comfortable with it” (103, EL, male). Another patient found the introductory letter anxiety provoking as it made them fearful something must be wrong with their health. This patient would have preferred an explanatory phone call prior to the introductory letter to alleviate fear. Overall, SL participants appreciated receiving materials and outreach in Spanish, as it aided in their receptivity to the program and understanding of the colonoscopy process. As one SL participant described, “I really appreciate when I can understand what it says there in Spanish – I appreciate it a lot, much more than when it is in English” (101, male).

Frequency and rapport:

Most patients (88%; 22) described their ongoing interactions with the navigator as professional, attentive, kind, and reassuring. As one patient described, “It just meant so much to me…I thought that [PN] was very compassionate, very sincere” (104, EL, female). Most patients (80%; 20) reported the navigator was knowledgeable and capable of answering questions, resolving barriers, and explaining elements of the colonoscopy process. One patient described, “I found [PN] to be very helpful - answered my questions very well, was very personable and able to assist me” (108, EL, female). The majority of patients (96%; 24) stated that the frequency of outreach from the navigator in the form of calls and/or texts, checking in on steps in the colonoscopy process or addressing possible barriers, was appropriate and “just right.” Furthermore, patients appreciated having the phone number of the navigator to text or reach out to as needed, particularly during the bowel preparation process. As one patient described, “We spoke the same day that I was supposed to start my prep, making sure that I was on track. [PN] was available for my phone calls and text messages and had a quick response” (102, EL, female).

Helpfulness of navigation

Overall:

All participants reported the navigation as helpful, describing appreciation for the outreach and guidance offered to help the multi-step nature of completing a colonoscopy “run smooth.” A patient described, “[PN] was very generous; the information was ample… Sometimes someone can forget details… [PN]took care of a lot of that” (101, SL, male). Patients also stated feeling “cared for” even if they had few to no concerns regarding the colonoscopy process. A SL patient noted, “I like that they worry about me. I thanked [PN] because there are few people who care about patients” (111, female).

Specific barriers addressed:

Navigation aided all participants in overcoming at least one, and often multiple, challenges to colonoscopy completion. Table 2 highlights the types and frequency of barriers addressed by navigation, identified from the integration of both interview data and navigator notes in the REDCap tool. A total of 108 barriers were assessed and addressed (average 4.3 per patient) across the 25 patients. SL patients had more total barriers (59) than their EL counterparts (49), and a greater average per participant barrier as well (4.9 versus 3.8). We describe these barriers and related navigation support below, listing them in order of frequency noted.

Table 2:

Barriers to Follow-up Colonoscopy Completion Addressed by Navigation

Barriers assessed & addressed as noted in interviews and REDCap tracking system (listed most frequent to least)	Types of Needs/Constructs* Addressed	Spanish-language (SL) patients (n = 12) n (%)	English-language (EL) patients (n = 13) n (%)	Totals (N = 25) N (%)
Bowel preparation process and completion (accessing it, understanding diet and process, answering questions or concerns, etc.)	Logistical, Informational, Emotional	12 (100%)	12 (92%)	24 (96%)
Communication and coordination with gastroenterologist (GI) office (scheduling visits, problem solving referral delays, rescheduling due to work or location, etc.)	Informational, Logistical	10 (83%)	13 (100%)	23 (92%)
Fear about and education of colonoscopy procedure (explaining why needed, how procedure works, addressing concerns and hesitancy, etc.)	Emotional, Informational	10 (83%)	9 (69%)	19 (76%)
Transportation and/or companion needs (explaining requirements, aid in accessing resources/serving as driver and companion, etc.)	Logistical and Informational	8 (67%)	6 (46%)	14 (56%)
Education/execution of COVID-19 related protocols (clarified and reminded Covid testing and vaccine requirements, rescheduled original colonoscopy for later date if needed, etc.)	Informational, Logistical	5 (42%)	6 (46%)	11 (44%)
Cost or insurance challenges (answered questions, aided in financial or insurance resources, etc.)	Financial	6 (50%)	3 (23%)	9 (28%)
Language needs (coordinated interpreters at GI office, served as interpreter, provided resources in Spanish, etc.)	Linguistical, Informational	8 (67%)	0	8 (32%)
Total number of barriers assessed & addressed per participants (ppts)		59 (average of 4.9 barriers per SL ppts)	49 (average of 3.8 barriers per EL ppts)	108 (average of 4.3 barriers per all ppts)

^*constructs (e.g. “informational” “logistical”, etc.) adapted from: Jetelina KK, Yudkin JS, et al. Patient-Reported Barriers to Completing a Diagnostic Colonoscopy Following Abnormal Fecal Immunochemical Test Among Uninsured Patients. Journal of general internal medicine. 2019. doi: 10.1007/s11606-019-05117-0. PubMed PMID: 31228053

Bowel preparation:

Almost all (96%; 24) patients required help with understanding and completing the bowel preparation process. Patients needed assistance with how to access their bowel preparation formula, and how to manage the overall process including the timeline for consumption of the formula. Patients often had questions or concerns over what foods could or could not be eaten during the bowel preparation process. Patients noted how important it was to their bowel preparation success to be able to ask questions directly of the navigator on the day they were to begin consuming their bowel preparation formula, including re-assurance they were doing it “correctly” or verification they had not consumed food or liquid that would nullify the process. As one patient described, “[PN] thoroughly went over the directions for the bowel preparation that I needed to do and made sure that I got the right prep. I didn’t want to do the whole prep and then eat something I wasn’t allowed to eat. [PN] made it very clear” (102, EL, female). Several SL patients noted the bowel preparation instructions they were given by their gastroenterologist (GI)’s office or during a pre-consultation visit were confusing or not in Spanish, hence the ability to speak with the navigator directly to ask questions and clarify the process was essential for success. A SL patient stated, “They [GI office] gave me a paper where it said what I could eat, what I couldn’t eat and then the preparation that had to be taken. The truth is I didn’t understand much and [PN] explained all that to me” (110, female).

Communication and coordination with GI office:

Most patients (92%; 23) experienced assistance from the navigator in scheduling aspects of the colonoscopy process and addressing scheduling issues. This might have included the navigator problem-solving referral delays and aiding in resubmitting referrals to GI practices, assisting with explaining the difference between a pre-procedure visit and the actual colonoscopy and assisting with booking both visits, and finding different GI locations to improve accessibility and travel burden. As one patient described, “[PN] would ask all the questions to make sure that I was in the right place and time.

[PN] facilitated the whole thing - when I was going in and all of that, and was great about contacting [GI office] and making sure they contacted me.” (110, EL, female). Patients reported the navigator also helped to re-schedule colonoscopies for patients due to logistical issues such as employment, not completing the bowel preparation correctly, and during COVID-19 delays in care. A patient described, “[The GI office] told me they didn’t have availability… [PN] asked me how the scheduling had gone, and I told him. [PN] told me, ‘I’m going to talk to the [GI office], let’s see what we can do. If they really don’t have room, we’re going to send you to another place’” (111, SL, female).

Fear about colonoscopy:

Most (76%; 19) stated the navigator outreach eased their fears and anxiety about why the colonoscopy was needed, lessening their hesitancy to follow through with the colonoscopy. These patients, represented slightly more by SL participants, described initially not wanting to engage in the colonoscopy due to their fears and unfamiliarity with the process. As one patient stated, “[PN] gave me more confidence to feel better because I was feeling afraid”(106, SL, female). SL patients, in particular, described how the navigator’s ongoing, proactive guidance helped them to feel “more secure” about completing the colonoscopy. As one SL patient described, “I felt calm, because I knew that everything was going to turn out well, I felt secure, so everything was fine. [PN] was very kind and made me feel very confident before going in to have the colonoscopy” (107, female).

Transportation and companion:

A little more than half of patients (56%; 14) had transportation and/or companion challenges. These challenges came up slightly more often for SL patients (8). Overall, for these 14 patients, the navigator offered either local community transportation resources or the opportunity to take Lyft (ride service) as part of the PRECISE program. Other times, the navigator helped the patient brainstorm their own solutions and helped the patient to remember to secure reliable transportation and a companion. A patient described, “The transportation part was the hardest part for me. I didn’t have anyone to take me, I didn’t have anyone to go with me and [PN] went ahead and scheduled transportation. It was a big help, because otherwise I would’ve never got it done” (111, EL, female). In some cases, the navigator served as the transport, and sometimes as a companion, to a few patients either for their pre-procedure visit or their colonoscopy appointment. A SL patient described how the navigator served as both companion and transport for the colonoscopy, “The day of the colonoscopy [PN] accompanied me, was my transportation…waited for me and took me to my home. PN did everything, helped me with all that” (104, male).

Execution of COVID-19 protocols:

As noted above, the navigator aided patients in rescheduling their colonoscopy several months later due to delays in care caused by COVID-19 pandemic policies. Some patients (44%; 11) received support from the navigator in understanding and executing COVID-19 protocols required by GI offices. Given that GI practices had variations in their COVID-19 requirements, the navigator assisted these patients in both understanding the requirements and executing them, from how and when to obtain a negative COVID-19 test prior to the colonoscopy to whether vaccination was required or how protocols impacted companion and transportation needs. A patient described, “[PN] set-up the COVID test for me and when my ride didn’t show up [PN] set up that second COVID test too [re-booked colonoscopy]” (109, EL, female).

Cost and insurance issues:

About a third of patients (36%; 9) required help from the navigator with financial or insurance issues, and this barrier was reported more often with SL patients (6). The navigator aided patients with billing issues from the GI office including confusing or incorrect billing, as noted by one SL patient, “I wasn’t happy about the bill they sent me [for the colonoscopy]… [PN] helped me with it” (106, female). For several patients, the navigator assisted with providing resources or applications for aid in reducing the financial burden of the colonoscopy. One patient described, “I don’t have insurance… [the colonoscopy] worried me a lot because it’s expensive. I asked for help when I got my positive result. [PN] helped me do it for free” (102, SL, female).

Language needs:

For about one-third of all patients (32%; 8), all representing SL patients, the navigator aided in language and interpretation needs. The navigator either coordinated and ensured interpreter services were present at pre-procedure and colonoscopy appointments, or at times served as the patients’ interpreter with the GI office. A SL patient described, “[PN] was also my interpreter” (103, female), and another SL patient stated, “[PN] was my translator when we got there to the [GI] clinic…I’m very grateful to [PN]” (104, male). The navigator also made sure these patients had written instructions for the bowel preparation in their preferred language or access to a family member to aid in interpretation of instructions.

Colonoscopy completion and future actions

Completion:

All interviewed patients completed a successful colonoscopy, describing the procedure as “smooth” or “quick,” and generally without surprises. Over half of the patients (52%; 13) stated they either would not have completed the colonoscopy or had as much success in completing it without the support and problem-solving help from the navigator. More SL patients (8) noted this, with one stating, “In fact, I feel good because I think [PN] can help not only me, but many more people who don’t understand this process” (108, SL, male). Additionally, all patients reported receiving and understanding their colonoscopy results from their GI office, and appreciated the follow-up outreach by the navigator to make sure they were aware of and understood their results.

Future actions:

All patients stated the navigation outreach was a useful and important service That should continue and would be a service they would accept again in future if they needed it. As one patient described, “The way the program was set-up worked for me. I would highly Recommend it [continue] because I was guided with good, clear information, and numbers to call if I had a question. I had all of those tools put into place. And I needed that because I didn’t know what I was dealing with. So, it was really great” (110, EL, female). The majority of patients (96%; 24) stated they plan to follow through with the recommendation for their next colonoscopy and now feel more confident in the process. One EL patient was more hesitant about this, mostly due to disliking the bowel preparation process.

Improvements:

While all interviewed patients described benefits from the navigation program, some also identified areas where the program could improve. The most common feedback from patients (44%; 11), was to improve the timeliness and follow through of outreach calls from the navigator. These patients indicated the navigator did not always call at the time they said they would, such as checking in prior to the colonoscopy, or did not get back to the patient soon enough. One patient stated, “[PN] hasn’t answered me lately. I don’t know why the day he called me the call didn’t go through” (111, SL, female). Other patients noted the first outreach attempt needed to occur earlier, potentially closer in time to the abnormal FIT result. These patients also described sometimes experiencing too much “phone tag” with the navigator or calls coming at inconvenient times such as during work hours. As one patient noted, “Sometimes [PN] called at inopportune times. Every once in a while, [PN] would call and leave me a VM that was just blank” (112, EL, male). Patients recommended the navigation program improve the efficiency and timing of their outreach, with calls also occurring during non-work times such as on weekends and evenings. They also suggested having more than one navigator to aid in timeliness and follow through of the outreach support.

Another improvement suggested by some patients (24%; 6) focused on improving the demeanor, relatability, and knowledge base of the navigator. These patients, all EL participants, described sometimes experiencing the navigator as overly cheerful, sounding “young,” unable to answer questions, or seeming like they lacked confidence in describing the colonoscopy process or addressing a barrier. One patient EL described, “The [PN] sometimes didn’t seem very confident. I could hear it in [PN’s] voice and when I asked a question, [PN] didn’t have a straight answer, didn’t seem sure of it” (107, male). These patients suggested making sure the navigator is fully trained and experienced in understanding the colonoscopy process and why it may be needed, and giving the navigators access to a trained medical provider who can aid in answering questions. They also suggested that the navigator have better awareness of local resources or GI office locations in the patients’ service area, and perhaps be closer in age and life experience to the patients receiving navigation services.

DISCUSSION

Our interviews with a sub-set of patients who received navigation to assist them in completing follow-up colonoscopy after a positive FIT result showed patients perceived navigation as helpful and reassuring. This perception was consistent even among patients with few barriers or needs. Patients particularly valued assistance with appointment scheduling, and having a single point of contact for addressing colonoscopy prep-related questions. They identified areas for improvement: making sure navigators are well versed in local resources such as knowing multiple GI offices that could do the colonoscopy in patients’ area; and having access to experts who could provide information if navigators could not answer patients’ questions.

Patients offered several additional ideas for how to improve the patient experience with navigation. These included shortening the time to initiating navigation (time from abnormal FIT result), improving the timeliness and follow through of outreach calls from the navigator, and calling on weekends and evening to reduce ‘phone tag’ or inconvenient call receipt (at work). Other patients preferred a navigator who matched their age and could more confidently explain the bowel preparation process. While the study intended to initiate navigation within a month of the abnormal FIT result, COVID-19-related disruption led to unanticipated delays for some patients.

Our finding that the most common barrier addressed by navigation was lack of information or confusion about the bowel preparation process illustrates a key informational need for patients. Mog and colleagues interviewed GI providers at high- and low-performing gastroenterology facilities operated by the Veterans Administration. Among key differences in high- and low-performing sites was that higher performing sites addressed patients’ informational needs by communicating the importance of diagnostic colonoscopy. ⁶ Greater communication and explanation of the colonoscopy process from physicians was noted in a prior studies as an effective strategy for allaying patient fears associated with the procedure. ^7,10 Our interviews also found the second most common support need for patients was assistance from the navigator in managing any referral challenges from their primary care provider to the GI specialist and aiding in scheduling both the pre-procedure and colonoscopy appointments. A recent root-cause mixed-method analysis of barriers to timely colonoscopy completion in an FQHC setting identified poor coordination and communication between the referring primary care provider and GI offices as a key system-level challenge. ⁷ Our findings demonstrate how navigation can play an important role in addressing these system-level coordination and logistical barriers, given that the referral and scheduling process are early first steps in the overall colonoscopy completion process where patients may experience issues or confusion and therefore not follow through. Our findings further identified new informational needs related to COVID-19 policies. While policies such as masking, pre-procedure COVID-19 testing requirements, vaccination, and restrictions on companions entering health facilities are no longer in effect, the fact that patients were confused and/or needed help navigating them suggests the important role that navigators can play when local health conditions change suddenly due to disease outbreaks, for example, or due to other local or national health emergencies.

A larger mailed FIT and PN program conducted in a safety net health system in North Texas found results relevant to our study and to designing future navigation programs for colonoscopy follow-up. Among the 314 (45%) of participants that did not complete a follow-up colonoscopy, 184 (59%) had a documented reason. Reasons included health insurance-related challenges (38%, financial), comorbid conditions (37%, medical), social barriers such as transportation difficulties and lack of social support (29%, social/logistical), concerns about FIT/colonoscopy process (12%, emotional), competing life priorities (12%, social), adverse effects of bowel preparation (3%, medical), and poor health literacy (3%, linguistical). ⁹ These findings suggest that financial, medical, and social/logistical barriers persist even for patients who receive navigation.

Our comparison of barriers identified by Spanish- and English-preferring language adults showed that, overall, Spanish-preferring patients mentioned more barriers than English-preferring patients (Table 2, 4.9 vs. 3.8 barriers). The barriers addressed by navigators that were more commonly identified by Spanish-preferring adults were: bowel preparation process and completion (informational), fear about the colonoscopy procedure (emotional), transportation and/or companion needs (logistical), cost or insurance challenges (financial), and language needs (linguistic). Our study suggests that Spanish-speaking patients had more barriers addressed across all barrier types.

This study had several strengths. We observed saturation in our content analysis from the 25 interviewed patients. ¹⁶ We also interviewed a similar number of English- and Spanish-preferring adults, which meant that we could assess and compare experiences across patients’ language preferences. Weaknesses include the fact that those who agreed to be interviewed may have had more positive experiences with navigation (e.g., social desirability bias). Additionally, we limited our interviews to patients who received navigation; thus, our findings cannot be generalized to patients who declined or were not reached for navigation. Future research may want to assess reasons for declining navigation, as well as different levels of navigation outreach according to different types of barriers to colonoscopy completion and/or socio-economic and cultural factors.

CONCLUSION

Our qualitative study, although small, indicated that navigation services fulfilled important functions in helping patients make appointments for follow-up colonoscopy, correctly complete their bowel preparation, feel at ease with the process, navigate language barriers if they were SL, and get to and from the appointments. PN programs are a rapidly growing area of patient care and are garnering interest because they can be an effective and low-cost way to assist people who might fall through the cracks in accessing services. Avoiding delayed cancer screening and missed care can be cost-saving and save years of life and morbidity. ^28,29 Other larger studies among a variety of language speakers are needed to understand how best to deliver PN and whom to target for more intensive PN services.

Supplementary Material

Appendix

Supporting Information 1: Interview guide (to be published with manuscript)

Supporting Information 2: COREQ checklist (not to be published with manuscript)