Patient Perspectives on Barriers and Facilitators to 1-year Surveillance Colonoscopy Completion in Survivors of Colorectal Cancer: A Multimethod Analysis

Abstract

BACKGROUND:

Patients treated for stage I to III colorectal cancer are at high risk for developing new and recurrent colon cancers. Therefore, professional organizations recommend a surveillance colonoscopy approximately 1-year postsurgical resection to ensure early detection. Despite these guidelines, surveillance colonoscopy completion rates remain suboptimal.

OBJECTIVE:

This multimethods study aimed to explore patient-identified barriers and facilitators affecting the completion of 1-year surveillance colonoscopies among stage I to III colorectal cancer survivors.

DESIGN:

Multimethods study.

SETTINGS:

The study was conducted within the Hutchinson Institute for Cancer Outcomes Research Value in Cancer Care Network, which comprises 46 clinics across 13 counties in Washington State.

PATIENTS:

We enrolled stage I to III colorectal cancer survivors who had not completed surveillance colonoscopy within 18 months of surgery. Participants completed questionnaires and semistructured interviews between December 2023 and June 2024.

MAIN OUTCOME MEASURES:

Questionnaire data and interview transcripts were independently coded and analyzed by 2 coders to identify key themes and subthemes related to barriers and facilitators of surveillance colonoscopy completion.

RESULTS:

The study included 19 patients. The median (interquartile range) participant age was 73 (17.8) years, 9 (47.4%) were men, and 8 (42.1%) had stage I cancer. All participants reported cognitive and environmental factors as both barriers and facilitators to surveillance colonoscopy completion. The most reported barriers were fear of the colonoscopy results and cancer recurrence (cognitive) and challenges with the bowel preparation (environmental). The most frequently reported facilitators were patient’s motivation to receive reassurance (cognitive) and clinic assistance in scheduling appointments (environmental).

LIMITATIONS:

Results may not be generalizable due to population and selection bias of participants.

CONCLUSIONS:

This study identified barriers and facilitators to completing a 1-year surveillance colonoscopy, which will guide future interventions. Addressing both psychological concerns and improving communication between patients and clinics could be key strategies to enhance adherence rates and improve long-term outcomes for colorectal cancer survivors. See Video Abstract.

PERSPECTIVAS DE LOS PACIENTES SOBRE LAS BARRERAS Y LOS FACILITADORES PARA COMPLETAR LA COLONOSCOPIA DE SEGUIMIENTO AL AÑO EN SUPERVIVIENTES DE CÁNCER COLORRECTAL: UN ANÁLISIS MULTIMÉTODO

ANTECEDENTES:

Los pacientes tratados por cáncer colorrectal en estadio I-III corren un alto riesgo de desarrollar nuevos cánceres de colon y de que estos reaparezcan. Por lo tanto, las organizaciones profesionales recomiendan una colonoscopia de vigilancia aproximadamente un año después de la resección quirúrgica para garantizar la detección precoz. A pesar de estas directrices, las tasas de realización de colonoscopias de vigilancia siguen siendo insuficientes.

OBJETIVO:

Este estudio multimétodo tenía como objetivo explorar las barreras y los facilitadores identificados por los pacientes que afectan a la realización de colonoscopias de vigilancia al año entre los supervivientes de cáncer colorrectal en estadio I-III.

DISEÑO:

Estudio multimétodo.

ENTORNO:

El estudio se llevó a cabo en el Hutchinson Institute for Cancer Outcomes Research Value in Cancer Care Network, que comprende 46 clínicas en 13 condados del estado de Washington.

PACIENTES:

Se inscribieron supervivientes de cáncer colorrectal en estadio I-III que no habían completado la colonoscopia de vigilancia en los 18 meses posteriores a la cirugía. Los participantes completaron cuestionarios y entrevistas semiestructuradas entre diciembre de 2023 y junio de 2024.

PRINCIPALES MEDIDAS DE RESULTADOS:

Los datos de los cuestionarios y las transcripciones de las entrevistas fueron codificados y analizados de forma independiente por dos codificadores para identificar los temas y subtemas clave relacionados con las barreras y los facilitadores de la realización de la colonoscopia de vigilancia.

RESULTADOS:

El estudio incluyó a diecinueve pacientes. La mediana (rango intercuartílico) de la edad de los participantes fue de 73 (17,8) años, 9 (47,4 %) eran hombres y 8 (42,1 %) tenían cáncer en estadio I. Todos los participantes informaron de factores cognitivos y ambientales como barreras o facilitadores para completar la colonoscopia de vigilancia. Las barreras más mencionadas fueron el miedo a los resultados de la colonoscopia y a la recurrencia del cáncer (cognitivo) y las dificultades con la preparación intestinal (ambiental). Los facilitadores más frecuentes fueron la motivación del paciente para recibir tranquilidad (cognitivo) y la ayuda de la clínica para programar las citas (ambiental).

LIMITACIONES:

Los resultados pueden no ser generalizables debido al sesgo de selección de la población y de los participantes.

CONCLUSIONES:

Este estudio identificó barreras y facilitadores para completar una colonoscopia de vigilancia anual con el fin de orientar futuras intervenciones. Abordar las preocupaciones psicológicas y mejorar la comunicación entre los pacientes y las clínicas podrían ser estrategias clave para mejorar las tasas de adherencia y los resultados a largo plazo de los supervivientes de cáncer colorrectal. (AI-generated translation)

Video Abstract

Video Abstract.

Download video file ^{(1.9MB, mp4)}

Colorectal cancer (CRC) is the third most common cancer in the United States and the second leading cause of cancer-related mortality in men and women combined.¹ In 2023 alone, more than 50,000 deaths were attributed to CRC, highlighting a significant public health issue. An estimated 68% to 80% of these deaths could be potentially prevented through effective screening, surveillance, and treatment.^1–3 Patients diagnosed with stages I to III CRC generally receive surgical resection with the intent of cure. However, up to 30% to 40% of patients experience disease recurrence.^4,5 Therefore, vigilant and early postoperative surveillance is crucial to detecting recurrence early and ensuring timely intervention.

Posttreatment surveillance care includes a combination of blood tests, such as CEA, cross-sectional imaging, and endoscopy.⁶ Professional organizations, including the National Comprehensive Cancer Network and the American Society of Clinical Oncology, consistently recommend that patients treated with curative intent complete a surveillance colonoscopy approximately 1 year after surgical resection.^7,8 One study found that completing a follow-up colonoscopy can reduce 5-year mortality by approximately 43%.⁹ Notably, patients who had surveillance colonoscopy 36 to 60 months after resection showed higher rates of advanced neoplasms than those who completed it within 18 months.¹⁰ Despite these recommendations and mortality benefits, 1-year surveillance colonoscopy completion rates remain suboptimal, with previous studies showing completion as low as 42%.¹¹ We previously reported that among CRC survivors in Washington State, only 56% completed a 1-year surveillance colonoscopy even when this look-out period was extended to 18 months.⁸ This rate is concerning given the high risk of recurrent and metachronous cancer in this population.

Although research has examined completion rates, there is still a gap in understanding the modifiable barriers and facilitators for completing a 1-year surveillance colonoscopy among cancer survivors. To date, the majority of studies have identified nonmodifiable sociodemographic factors (such as older age, race, and sex) and clinical characteristics (such as higher CRC stage) when assessing adherence to 1-year colonoscopy surveillance.^12,13 Therefore, qualitative studies could address a critical gap by exploring modifiable risk factors.^14,15 Our previous qualitative work in this domain explored provider-identified barriers and facilitators. It found that fragmented care was a major obstacle, whereas stronger communication with the health care team and patient reminders were identified as key facilitators.¹⁶ To build on this research, our current study aimed to understand patient-identified barriers and facilitators to completing 1-year surveillance colonoscopy among patients with stage I to III CRC. We anticipate that this work will complement our findings from providers and inform interventions to improve surveillance colonoscopy completion in CRC survivors.

MATERIALS AND METHODS

Study Design, Setting, Population, and Research Team

This is a convergent, parallel, multimethods study in which quantitative and qualitative data were collected concurrently, analyzed separately, and compared to identify similarities and differences. The study was conducted through the Hutchinson Institute for Cancer Outcomes Research Value in Cancer Care Network, a consortium of 46 clinics across 13 counties in Washington State. Patients were eligible if they met the following criteria: 1) identified English as their primary language, 2) were aged 18 years or older, 3) had been diagnosed with stage I to III CRC, 4) had undergone surgical resection between January 2021 and December 2021, and 5) had not completed a colonoscopy within 18 months of the recommended surveillance period (to account for delays in endoscopic scheduling due to COVID-19).

This study used purposive sampling to recruit individuals who had not completed surveillance colonoscopy within 18 months. All eligible patients were sent an invitation letter describing the study. Patients were then contacted by phone up to 3 times by a study coordinator to assess interest in participating. Patients who provided verbal informed consent and completed the study received $100 for their time. The study was approved by the Fred Hutchinson Cancer Center Institutional Review Board.

Our research team included 7 individuals with diverse sex and racial/ethnic identities. Members had a range of professional experiences and training, including attending gastroenterologists, resident and fellow trainees, and individuals with advanced degrees in public health and public administration. None of the team members had a prior relationship with the research participants. Most had experience conducting qualitative research and were familiar with the Social Cognitive Theory (SCT).

Patient Questionnaire and Interview Guide Development

The first, second, and senior authors developed a preinterview questionnaire and interview guide by adapting questions from previously published, validated tools on colonoscopy adherence.^14,17 Although the instruments were not formally piloted before use, they underwent multiple rounds of review with all co-authors before distribution to participants, and no further revisions were made during data collection. The questionnaire was distributed to patients before the interview and collected information regarding demographics, social determinants of health, barriers and facilitators to colonoscopy completion, self-efficacy, perceived susceptibility, and cancer worry.^14,18 Questions about barriers and facilitators, self-efficacy, perceived susceptibility, and cancer worry were rated on a 4-point Likert scale ranging from strongly disagree (1) to strongly agree (4).

A semistructured interview guide was developed, informed by the Health Behavior Model (HBM).^19,20 We selected this framework because it has been widely used in public health research to understand health behaviors and inform interventions across the cancer care continuum.²¹ Our final interview guide included 11 questions from key elements of the HBM and the patient questionnaire, covering areas such as knowledge, perceived susceptibility, cancer worry, self-efficacy, facilitators, and barriers.^19,20 It outlined specific questions and probes to be used as needed during the interviews for each section.

Data Collection

Questionnaires and semistructured interviews were conducted by trained study staff, primarily the first and second authors, between December 2023 and June 2024 using secure platforms such as Zoom and Microsoft Teams. The interviewers had no prior relationship with the participants. Surveys were entered into a secure REDCap (Research Electronic Data Capture) database. Patient questionnaires and interviews took an average of 35 minutes to complete. All interviews were audio-recorded, transcribed verbatim, de-identified, and uploaded to a secure database for analysis. Transcription was completed by the institutional collaborative data services team and verified against the recordings by a study team member. Following accepted standards of rigor in qualitative research, data collection was continued until thematic saturation was achieved, defined as the point at which no new themes emerged from subsequent interviews.²²

Data Analysis

Questionnaire and interview data were analyzed separately, compared, and integrated. Patient demographics were summarized as proportions or medians with interquartile ranges. For the quantitative analysis, questions assessing self-efficacy, perceived susceptibility, cancer worry, perceived benefits, and barriers were grouped into their respective constructs. Responses were coded numerically from 1 (strongly disagree) to 4 (strongly agree), and mean scores were calculated for each construct for every participant. Participants were stratified into subgroups, including age, sex, race, ethnicity, household income, and cancer stage. Within each demographic subgroup and theme, the means and SDs were calculated. Independent tests and 1-way ANOVA tests were used to evaluate between-group differences. All statistical tests were 2-tailed, and significance was set at a p value of <0.05.

For the qualitative analysis, 3 study team members developed an initial set of codes informed by the SCT.^19,23 SCT is a widely used framework in health care for understanding how individuals’ behaviors are shaped by a dynamic interaction among personal beliefs, environmental factors, and social influences.²⁴ This theory has been widely used to form health care interventions, making it a useful tool for our analysis.^25,26 Two coders (P.A. and N.C.) reviewed the same subset of interview transcripts using these initial codes and developed additional subcodes as needed to accurately capture patient responses. The coders compared their findings to ensure consistency and finalized the codebook. The 2 coders used the finalized codebook to review all the interviews and identify data and participant quotes to support the emerging themes. We used Dedoose (SocioCultural Research Consultants) qualitative coding software, version 9.0.107, to manage and analyze the data. Results are presented as the number and percentage of patients endorsing each theme.

Data from the questionnaires and interviews were evaluated by comparing the proportions of responses for each group. Differences between proportions were assessed using a 2-sample z test. The resulting z scores were converted to p values, and differences were considered statistically significant if p values were <0.05.

RESULTS

Demographics

A total of 77 eligible patients were identified. Of these, 19 (24.6%) consented and completed the study, whereas 2 consented but did not complete the interview. Fifty-six patients did not consent, primarily because we were unable to reach them (n = 40; 51.9%), or they declined participation (n = 16; 20.8%). Among the 19 interviewed participants, the average (interquartile range) age was 73 (17.8) years, 52.6% (n = 10) were female, 84.2% (n = 16) self-identified as White, 36.8% (n = 7) had an annual household income that was less than $50,000 (Table 1) and 42.1% (n = 8) of participants were initially diagnosed with stage I CRC.

TABLE 1.

Patient demographics (N = 19)

Variable	n (%)
Age, y, median (IQR)	73 (17.8)
Sex
Male	9 (47.4)
Female	10 (52.6)
Race
White	16 (84.2)
Non-White	3 (15.8)
Ethnicity
Hispanic or Latino	1 (5.3)
Not Hispanic, Latino	18 (94.7)
Relationship status
Single	3 (15.8)
Married/domestic partner	14 (73.7)
Separated	2 (10.5)
Educationb
High school or less	4 (21.1)
College	11 (57.9)
Graduate school	3 (15.8)
Insurance typea
Medicaid	2 (10.5)
Medicare	12 (63.2)
Private	7 (36.8)
Self	9 (47.4)
Household incomeb
≤$50,000	7 (36.8)
$51,000–$100,000	3 (15.8)
>$100,000	6 (31.6)
Stage CRC
Stage I	8 (42.1)
Stage II	5 (26.3)
Stage III	6 (31.6)

Data presented as n (%) unless otherwise indicated.

CRC = colorectal cancer; IRQ = interquartile range.

^aCould select multiple.

^bNot all participants responded to this question.

Questionnaire Findings

Patient questionnaire responses revealed the following: 100% believed that the follow-up colonoscopy could help protect their health and that CRC could be cured when found early, and 89.5% (n = 17/19) strongly agreed or agreed that the benefits of a colonoscopy outweighed any difficulties they might face during the procedure (Fig. 1; see Supplemental Table 1 at https://links.lww.com/DCR/C568). In addition, 63.1% (n = 12) agreed or strongly agreed that they were afraid of being diagnosed with CRC again, and 26.3% (n = 5) agreed or strongly agreed that they were bothered by the chance that a follow-up colonoscopy could be physically uncomfortable (Fig. 1; see Supplemental Table 1 at https://links.lww.com/DCR/C568). A greater proportion of female participants reported fear about colon cancer recurrence, and more participants with an annual income of less than $50,000 expressed concern about transportation. However, these differences did not reach statistical significance given the small sample size. No other differences were observed on the basis of sociodemographic characteristics.

FIGURE 1.

Preinterview questionnaire.

Interview Findings

Patient-identified barriers and facilitators to surveillance colonoscopy completion fell into 2 main themes: 1) cognitive, referring to internal or psychological factors such as knowledge, attitudes, or perceptions, and 2) environmental, referring to external, situational, or systemic factors such as health care system or logistical challenges. The major themes and participant quotations are summarized in Table 2. We did not find differences in interview responses based on sociodemographic factors.

TABLE 2.

Key themes and quotations from patient interviews (N = 19)

Themes	n (%)	Quotations
Barriers to completing colonoscopy
Cognitive factors
Worry about colonoscopy results	12 (63.1)	“I think anyone having a colonoscopy experiences anxiety about what will be found. I mean we’re pretty, I mean people are pretty naive to the workings of the insides of our bodies and so of course it’s going to raise concerns.”
Fear of procedural or preprocedural complications	5 (26.3)	“Well, I just know somebody that had one done and they died from it...So that was one of my big issues. They punctured something through her lining. She got sick.”
Unsure how to schedule colonoscopy	2 (10.5)	“I was ready to call and then I kind of hit that roadblock again, and I’m like, I don’t even know who to call other than my main doctor, but you know, he has no idea what’s going on with my situation, really.”
Does not understand why colonoscopy is needed	2 (10.5)	“I feel pretty fine and then I also know like they took my whole colon out, so I don’t really know what’s really there to look at right, so like, they’re really only gonna have like 2 inches. I only have like 2 inches of colon left, but I don’t, because I don’t think colonoscopies go up to small intestine, do they?”
Forgets or confused by procedure	2 (10.5)	“I think, I have got a letter from my new health care provider about coming in just because of a unique situation, it’s a pretty generic letter, and I was going to do something then and then I lost the letter and then I kind of forgot about it.”
Environmental factors
Difficulty with preparatory regimen	8 (42.1)	“It is physically demanding of me to do all the stuff that’s prepped and I’m, I guess, not very tolerant of spending 48 hours or more, drinking liquids, pooping in a place not my home, and feeling nauseated. I mean, it’s not an easy thing to do.”
Lack of effective communication from clinic	6 (31.6)	“You know, there’s a big, big, big lack of communication here because I’m somebody that likes to make a decision and I like all the information, and they just say no, this is the way the rules say.”
Negative past experiences with providers	5 (26.3)	“Because it just, the trust was not there anymore, and I was too frustrated, and I was uncomfortable with having these interactions. I think I had a second appointment with them, and I wound up canceling that as well.”
Clinic doesn’t assist with scheduling	4 (21.0)	“I’m usually told when I should get the next one and then no one ever calls me to help me schedule, so I end up having to reach out...to get something scheduled. Unfortunately, that’s meant that I’ve been a little late on some of them.”
Discomfort of procedure	3 (15.8)	“It just made me feel kind of queasy to think about, you know? A camera and all that. It’s like I just wanted to be out. I didn’t want to know about it.”
COVID-19 pandemic	3 (15.8)	“I had it all set up for mine, but then it was in COVID times, and I wasn’t super excited about all of that kind of stuff.”
Continuity of care	2 (10.5)	“What kind of makes me hesitant, because it’s been 4 or 5 years... is now the people that I was dealing with are no longer there I think.... And then I’ve also switched health care providers because the one I dealt with retired. So now it’s like nobody really knows what’s going on and I’m like, whatever.”
Facilitators to completing colonoscopy
Cognitive factors
Reassurance cancer has not returned	11 (57.9)	“You find out that you’re clean and green, you know, good to go, and that kind of... gives you a little reassurance, a little pep in the step, you know. I don’t have to go through the chemo. I don’t have to go through the radiation, the potential surgery and... it’s just reassuring.”
Not worried about colonoscopy results	10 (52.6)	“I don’t have any real dread that it’s going to be an awful outcome... It’s kind of a neutral response. It just kind of one of the things that you kind of need to do because that’s the next [step].”
Finding disease that otherwise may not have been found	6 (31.6)	“Catching anything new, being able to get something before it gets too far along.”
Positive prior colonoscopy experience	6 (31.6)	“Overall, I’d say the initial colonoscopy, I was kind of wigged out about, but after doing it, I kind of realized oh, these aren’t that big of a deal, it’s pretty easy.”
Motivated by colorectal cancer history	4 (21.1)	“I just like to stay on top of that with my history, I, it’s just something that I just really want to, you know, stay up on top of having those.... We’ll just see where, where this journey leads us, and I will do what I need to do to extend life.”
Colonoscopy seen as important	4 (21.1)	“It’s a diagnostic tool and you want to have as much information as you can, and information is king, so you’re able to make a decision based on correct information, kind of the scientific method, you know?”
Environmental factors
Clinic setting up appointment	12 (63.2)	“And I remember being adamant that I was going to do it and telling them how with any kind of medical or dental thing, as long as it’s on the calendar and I’m getting like an email or a text message, I never miss appointments. I’m as regular as clockwork, you know, like just let’s schedule it, even if it’s twelve months from now and I will be there.”
Provider influence	10 (52.6)	“I just put it off and put it off and put it off, and my primary care physicians said, ‘Hey, look, you need to get this done and you know.’ So rather than risk his wrath the next time I had the physical I went ahead and got it done.”
Being educated about colonoscopy by health care team	7 (36.8)	“They recommended that after I had, you know, colon cancer,..I have surgery and then had 6 months of chemo, and then follow-up with colonoscopies after that.p.”
Social determinants of health—having transportation or chaperone available	6 (31.6)	“I had to have somebody drive me back. Um, my daughter accompanied me. Boy, it’s a blur. My daughter accompanied me back, I’m sure, in an Uber.”
Trialing different preparatory regimen	3 (15.8)	“I sent messages back and forth with the person who was going to do the colonoscopy, and I said, I...would prefer [other ways].... They were very forthcoming once I brought it up. But it wasn’t apparently regularly covered by Medicare insurance, so the cost was going to be on me... $200 would be worth it not to be throwing up...It was a much less stressful experience to use this other prep.”

Barriers

Cognitive factors

Patients identified fear of colonoscopy results (12 participants; 63.1%) or fear of procedural/periprocedural complications (5 participants; 26.3%) as the most common reasons why they had yet to complete their 1-year surveillance colonoscopy. Related to fear of the colonoscopy, patients shared complications from prior colonoscopies or knowing someone who had complications, which led to stress and made them hesitant to seek another procedure. Other cognitive barriers are outlined in Table 2.

Environmental factors

Patients stated that the bowel preparation was the most common environmental barrier to completing the 1-year surveillance colonoscopy (8 participants; 42.1%). They expressed discomfort from the large volume of liquid required for a colonoscopy and endorsed significant symptoms, including nausea, diarrhea, emesis, and bloating. Other environmental barriers included a lack of proper communication from their clinics (6 participants; 31.5%) and a lack of assistance with scheduling surveillance colonoscopies (4 participants; 21.1%). Specifically, patients reported that they did not receive adequate communication regarding the specific dates for their colonoscopies and the subsequent steps.

Facilitators

Cognitive factors

Patients reported the following would facilitate and encourage them to complete their 1-year surveillance colonoscopy: 1) receiving reassurance that their cancer had not recurred (11 participants; 57.9%) and 2) detecting disease that might not be found without the surveillance colonoscopy (8 participants; 42.1%). In addition, patients shared that the comfort of receiving a normal result made any discomfort they might experience worthwhile (10 participants; 52.6%).

Patients also identified positive experiences from previous colonoscopies (6 participants; 31.6%), their history of colorectal cancer (4 participants; 21.1%), and understanding the importance of colonoscopy (4 participants; 21.1%) as facilitators of completing another colonoscopy. They recognized that their previous diagnosis necessitated regular check-ups and understood that colonoscopy was used to monitor for recurrence.

Environmental factors

Patients reported that clinics that assisted with scheduling colonoscopy appointments (12 participants; 63.2%) facilitated completing the procedure, as they provided clear timelines and reduced patient burden. Furthermore, patients noted that supportive and encouraging health care providers played a crucial role and positively influenced their decision to follow through with the 1-year colonoscopy (10 participants; 52.6%). Some patients (7 participants; 36.8%) pointed out that being educated about colonoscopies by the health care team was a critical motivator for them to follow through with completing the procedure.

Patients also expressed that having access to transportation or a chaperone for the procedure (6 participants; 31.6%) and the option of trialing a different colonoscopy preparation regimen (3 participants; 15.8%) facilitated completing 1-year surveillance colonoscopies. Notably, 1 patient even mentioned that being contacted about the current research study served as a helpful reminder and encouraged them to consider scheduling a colonoscopy in the future.

Overlap of Quantitative and Qualitative Findings

The overlapping barriers identified in both the quantitative and qualitative analyses were fear of cancer recurrence and concern about discomfort. The overlapping facilitators were reassurance that there was no cancer recurrence and availability of transportation (Fig 2; see Supplemental Table 1 at https://links.lww.com/DCR/C567). There was also some discordance in reported determinants. For example, although patients denied time constraints to completing follow-up in the questionnaire, in interviews they endorsed that logistical coordination and assistance with scheduling surveillance procedures were significant barriers.

FIGURE 2.

Overlap of patient-reported barriers and facilitators across qualitative and quantitative data. Panel A shows the overlap of qualitative and quantitative barriers. Panel B shows the overlap of qualitative and quantitative facilitators.

DISCUSSION

In this multimethods study of stage I to III CRC survivors overdue for a 1-year surveillance colonoscopy, we found several key barriers and facilitators to surveillance colonoscopy completion. The questionnaire and interview responses were largely concordant, showing that most patients recognized the importance of surveillance colonoscopy. However, despite this knowledge, there were multiple barriers to completion, including fear of colonoscopy, challenges with procedural preparation, and lack of communication or assistance with scheduling appointments. In contrast, patients who had low levels of cancer worry and received positive encouragement from their health care providers indicated a greater likelihood of completing follow-up colonoscopies. These findings not only confirm existing challenges but also highlight specific areas that can be addressed through targeted interventions to improve completion rates of 1-year surveillance colonoscopies after CRC treatment.

The role of cancer worry in influencing adherence to screening and surveillance behaviors is a topic of ongoing debate.^27,28 Both our preinterview questionnaire and patient interviews showed that higher levels of cancer worry, or fear of negative results (ie, cancer recurrence), from surveillance colonoscopies posed a cognitive barrier to surveillance adherence. Although the literature about cancer worry in CRC survivors is limited, our findings align with studies published on CRC screening, which show that fear of the procedure and potential diagnoses can lead to avoidance.^29,30 However, our results differ from other studies, such as the study by Murphy et al, where cancer worry was reported as a motivator for adherence in patients with a higher risk for CRC, such as those with adenomatous polyps.¹⁴ These contrasting perspectives underline the complexity of cancer worry in health behaviors; we propose that the impact of cancer worry on adherence behaviors in CRC survivors has been underreported and warrants more attention.

Our study also identified several system-related factors that influenced adherence to surveillance colonoscopies in cancer survivors. Although many patients indicated on the preinterview questionnaire that making time for the colonoscopy was not a problem, the interviews revealed that scheduling the appointment was logistically challenging due to insufficient communication about follow-up and a lack of scheduling support. Many patients highlighted that early appointment scheduling and frequent reminders from the clinic could enhance adherence. In the CRC screening literature, previous studies have highlighted that improving patient-clinic communication and implementing navigational support can address logistical barriers, streamline the follow-up process, and encourage higher colonoscopy completion rates.^31,32 Tools such as patient navigators, scheduling portals, and consistent follow-up calls or text reminders have been shown to be effective strategies for increasing colonoscopy completion and are now being explored for surveillance colonoscopies among CRC survivors.^33,34 Recent initiatives to expand navigation services for patients with cancer by the American Cancer Society include funding and training navigators in underserved areas and adding Medicare reimbursement codes for these navigation services.³⁵ These advancements strengthen navigation support within survivorship care and are potentially promising strategies to enhance surveillance adherence.

Our study also identified several facilitators that patients noted would, if present, motivate completion of surveillance colonoscopy. One key facilitator identified was the role of health care providers in offering positive reinforcement and clear education about the importance of surveillance. More than half of the participants emphasized that supportive communication from their providers would significantly motivate them to complete the 1-year colonoscopy. This aligns with existing literature, including studies by Stephens et al,³⁶ which highlight that discussions between physicians and patients increase compliance with CRC screening and surveillance.^37,38 Some studies also showed that seeing a primary care physician in the first year after diagnosis is associated with higher adherence.³⁹ In addition, Mollica et al⁴⁰ showed that higher patient ratings of primary care physicians are associated with better adherence to surveillance guidelines. A strong patient–provider relationship could allow providers to reinforce the importance of surveillance colonoscopies while also addressing cancer-related worry and fear of the procedure, both barriers in this population.

There are limitations to this study worth noting. First, our study population comprised primarily non-Hispanic White patients, which might influence the generalizability of the findings to diverse groups. Second, as all interviews were conducted among English-speaking individuals, our results might not reflect the barriers or facilitators to completing a 1-year surveillance colonoscopy experienced by patients with cancer whose primary language is not English. Notably, our study population was primarily insured through public insurance plans (Medicare and Medicaid), and the majority earned less than the annual median income in Washington State, where this study was conducted. Nonetheless, future studies with more racially, ethnically, and linguistically diverse populations are needed to determine concordance or discordance with the determinants our study identified. Third, the study was conducted during the COVID-19 pandemic. Although the 18-month timeline accounted for procedural delays, the pandemic may have influenced other factors related to colonoscopy noncompletion, such as trust in the health care system or perceived risk of infection. Finally, the facilitators identified were solely from participants who had not undergone surveillance colonoscopy; therefore, future studies could include individuals who completed colonoscopy within the recommended timeframe. Although thematic saturation was achieved after 19 interviews, we acknowledge that the relatively small sample size may limit the generalizability of our findings.

Our study also had notable strengths. First, our study used a multimethods approach, combining qualitative data with quantitative preinterview surveys, which offered nuanced insights into patient factors, and the combined approach provided internal validity and reinforced our findings. Second, our study was guided by well-established models such as the HBM and SCT, which strengthened the study’s conceptual foundation and helped our team systematically explore barriers and facilitators to colonoscopy adherence.

To our knowledge, this study is among the first to identify patient-reported barriers and facilitators to 1-year surveillance colonoscopy completion among CRC survivors. The insights from this study, when combined with our previous work on provider-identified factors, create a comprehensive foundation for developing interventions aimed at improving surveillance colonoscopy in CRC survivors.¹⁶ For example, clinics could consider implementing nurse navigation appointments to proactively address patient concerns and assist with scheduling the 1-year surveillance colonoscopy. In addition, to mitigate cancer-related anxiety, routine psychosocial assessments by behavioral health providers (ie, psychologists and mental health counselors) during clinic visits could be useful for evaluating patients’ anxiety and fear and potentially could help reduce these barriers to follow-up.²⁸ Finally, some patients mentioned the bowel preparation as a barrier to surveillance colonoscopy completion. Although the effectiveness of low-volume colonoscopy preparations is not well understood for screening and surveillance, we suggest exploring their potential benefits for the CRC survivor population.⁴¹ These strategies could empower patients to complete timely surveillance care and could improve care quality in this population.

CONCLUSIONS

Our study identified several patient-reported cognitive and environmental barriers and facilitators to completing 1-year surveillance colonoscopies. These findings suggest that decreasing cancer-related anxiety and increasing patient engagement with the health care system might increase 1-year surveillance colonoscopy completion rates. Specifically, clinics can adopt a model that includes nurse navigation and standardized psychosocial screening by behavioral health specialists. Implementing and evaluating interventions to improve the quality of care for CRC survivors warrants further exploration.

ACKNOWLEDGMENTS

Data Availability Statement: The data supporting this study are available from the corresponding author on reasonable request.

Ethics approval statement: This study was performed with approval from the Fred Hutchinson Cancer Center/University of Washington Cancer Consortium’s Institutional Review Board.