Abstract
Background:
Colorectal cancer (CRC) among adults aged <50 years (early-onset CRC [EOCRC]) is projected to be the leading cause of cancer-related death by 2030. Although evidence-based guidelines for CRC screening now recommend beginning screening at age 45, the needs of many at-risk young adults are potentially being overlooked. Unanswered questions also remain regarding the effects of EOCRC on quality-of-life and psychosocial outcomes. This qualitative study explored the lived experiences and perceptions of a sample of adult EOCRC survivors in the United States through one-on-one interviews.
Methods:
An EOCRC advocate survivor team (AST) member led 27 structured virtual interviews using a 10-question interview guide. Data were analyzed using a 9-step inductive approach.
Results:
Participants were geographically diverse. Most were women (66.6%) who self-identified as non-Hispanic White (85.2%). The mean age at interview was 40.19 ± 5.99; at diagnosis, 33.93 ± 5.90. Six overarching themes emerged: signs and symptoms, risk factors, system-level factors, quality of life, social support, and reflection.
Conclusions:
The specific needs of individuals in this younger population of CRC patients should be considered during treatment and future interventions and throughout survivorship.
Impact:
While the reasons for the increasing incidence of EOCRC are currently unknown, the lived experiences and perceptions of EOCRC survivors noted in this study highlight specific needs of this population that can inform educational materials, comprehensive care, future research, and policy change.
Keywords: adolescents and young adults, cancer, colorectal neoplasia, gastrointestinal cancer, health-related quality of life, oncology, risk factors, survivorship
Introduction
Colorectal cancer (CRC) diagnoses among adults aged under 50 years (early-onset CRC [EOCRC]) have steadily increased since the mid-1990s.(1–3) In the United States, EOCRC incidence rates increased by 2.2% annually between 2007 and 2016.(4) Compared with CRC patients diagnosed at age 50 years or older, patients with EOCRC are more likely to have advanced-stage disease at diagnosis.(5) These findings have prompted efforts to better understand how to prevent EOCRC and promote early-detection screening in this younger at-risk population. In this paper, we use the term “EOCRC patient” to represent a person who has or had EOCRC regardless of current treatment status.(6)
The lived experiences of patients with EOCRC have been understudied. A recent literature review concluded that, compared with patients who are diagnosed with CRC at age 50 or older, patients with EOCRC have significantly different psychosocial experiences (e.g., increased risk for financial distress and employment concerns, long-lasting physical symptoms, worse emotional distress, greater strain on personal relationships.(7–13) Poorer self-image and sexual dysfunction are concerns experienced by EOCRC patients that negatively affect their quality of life.(7) Altogether, EOCRC patients’ experiences create psychological burdens that warrant further study to identify effective means of support.
The published literature includes few qualitative studies focused on patients’ lived experiences after an EOCRC diagnosis.(8,10,14,15) These initial contributions to the knowledge base show the need for a more complete picture of the experiences of the EOCRC community. Much of this prior work relies on samples from distinct populations (e.g., advocacy groups) or specifically addresses female-centric issues or online community groups.(10,16,17) Therefore, additional research investigating the psychosocial and lifestyle domains affected by EOCRC is warranted to expand the current understanding of the needs of this survivor community.(7,18) The current study explored through qualitative interviews the lived experiences and perceptions of a sample of adult long-term survivors of EOCRC living in the United States.
Materials and Methods
Eligible participants resided in the United States, were diagnosed with CRC when aged between 18 and 49 years, had a device with internet access and Zoom videoconference capabilities, and could read and speak English. Exclusion criteria included inability to provide informed consent. Our initial recruitment goal was 20 participants, as prior literature documents that 6 to 12 single interviews per homogeneous group are sufficient to reach qualitative data saturation.(19) Our intent was to select a sample that reflected racial/ethnic, gender, and geographic diversity.
Participant recruitment occurred primarily through social media (e.g., Facebook, Instagram, LinkedIn, Twitter) between April and May 2022, using tailored flyers co-created with members of our EOCRC advocate survivor team (AST). In brief, these flyers included pictures of influential, diverse EOCRC survivor-advocates and their ages at diagnosis. The influential survivor-advocates also shared the flyers with their networks via their personal social media pages. Two versions of the flyer specifically targeted potential participants in Utah (the original aim of the study), while two other versions targeted the entire United States.(20; see https://tinyurl.com/iBeatCRC-Phase-2 for the flyers employed). Interested individuals completed a brief survey that collected information such as current age, race/ethnicity, age at diagnosis, and state of residence.
Eligible individuals who expressed interest in participating in the study were invited to participate in a one-hour Zoom interview. Based upon the availability of our interviewer (WJ, a member of our EOCRC AST), those selected were invited by email to choose an interview timeslot. After one week, email non-responders received a reminder phone call; if they still did not respond, another eligible and interested individual was selected and invited to participate. Of note, research team members had access to identifiable data only for the purpose of contacting potential participants for interviews.
Once interviews were scheduled in April and May of 2022, both interviewer and participant received a calendar invitation with a Zoom link for the scheduled interview time. One day before the interview, each participant received an email reminder that included links to a brief demographic survey and to the #iBeatCRC study website for more information about the study. Upon verification of completion of both the demographic survey and interview, each participant received a $30 gift card via the Giftogram platform.
The University of Utah’s Institutional Review Board [IRB_00138357] approved the study protocol prior to data collection. Before interviews, study participants provided written informed consent. Interviews followed a 10-question structured interview guide developed with input from two AST members (WJ, PG), two research-team members (EB, MDV), and the PI (CRR) (Table S1). Each interview was recorded on Zoom, professionally transcribed verbatim, and checked for accuracy by research staff prior to data analysis. A research team member (KMK or EB) served as a notetaker. The AST member asked the interview questions, while the notetaker started the recording, took notes, and pasted the questions into the chat throughout the conversation.
Data analysis was conducted between June and August 2022. The qualitative interview data were recorded, transcribed, and analyzed using an inductive approach to thematic analysis akin to Hatch’s nine-step approach.(21) Two study team members (KMK and EB), working with the first author (CRR), analyzed the transcripts to code for themes using multiple-cycle coding and constant comparative data analysis methods.(22,23) The latter method permitted data disaggregation into discrete incidents or units that were then coded into categories.(24) Initially the two team members each completed the coding procedure independently. They held weekly meetings with coauthor TNR to resolve disagreements, discuss emerging themes and subthemes, and make any necessary changes in coding logistics. For all interviews, new codes were developed until thematic saturation was reached. Overarching themes were identified based on codes and were confirmed to be supported by transcript data. RStudio version 2022.07.1 (R version 4.2.1) was used to analyze descriptive interview–specific demographic data.
Data Availability
The data generated in this study may be available upon request from the corresponding author and with the permission of the Medical College of Wisconsin IRB.
Results
Participant Characteristics
Over 80 interested individuals completed the recruitment survey within three days after its launch, of whom 35 were invited to schedule an interview. Of those, 29 were scheduled, gave informed consent, and completed the Zoom interview. Two participant interviews were excluded from analysis because they diverged from the research protocol. In total, 27 participant interviews were included in the analysis. Interviews lasted no longer than 60 minutes.
Study participants resided across the United States, with more than half living in the southern (44.4%) or midwestern (22.2%) regions. Most were women (66.6%) who self-identified as non-Hispanic White (85.2%). Participants’ mean age at interview was 40.19 ± 5.99 (range 28–53); at diagnosis, 33.93 ± 5.90 (range 26–44). Additional participant characteristics are presented in Table 1.
Table 1.
Participant Characteristics (N=27)
| Characteristic | M (SD) or n (%)a |
|---|---|
| U.S. Region | |
| Midwest | 6 (22.22) |
| Northeast | 5 (18.52) |
| South | 12 (44.44) |
| West | 4 (14.81) |
| Female | 18 (66.67) |
| Race/Ethnicity | |
| Non-Hispanic Asian American | 1 (3.70) |
| Non-Hispanic Black | 2 (7.41) |
| Hispanic | 1 (3.70) |
| Non-Hispanic White | 23 (85.19) |
| Age at Interview | 40.19 (5.99) |
| Age at Diagnosis | 33.93 (5.90) |
| Educationb | |
| Some College | 2 (7.41) |
| Associates Degree | 4 (14.81) |
| Bachelor’s Degree | 9 (33.33) |
| Master’s Degree or Higher | 11 (40.74) |
| Income (USD)b | |
| Less than $35,000 | 2 (7.41) |
| $35,000 – $49,999 | 2 (7.41) |
| $50,000 – $74,999 | 4 (14.81) |
| More than $75,000 | 18 (66.67) |
| Marital Statusb | |
| Married/In a Relationship | 19 (73.37) |
| Single/Divorced | 7 (25.93) |
| Employment Statusb | |
| Full-Time/Part-Time | 22 (81.48) |
| Not Currently Working | 4 (14.81) |
| Has Health Insuranceb | 26 (96.29) |
| Received CRC Screeningb | 7 (25.93) |
| Has a Primary Care Physicianb | 21 (77.78) |
| Visited a Doctor in Past 12 Monthsb | 24 (88.89) |
| Received CRC Screening Advice in Past 12 Monthsb | 7 (25.93) |
| Family History of Cancerb | 17 (62.96) |
| Family History of CRCb | 8 (29.63) |
| Prior Tobacco Useb | 0 (0.0) |
M=mean; SD=standard deviation; n=subgroup sample size; CRC=colorectal cancer.
M (SD) is displayed for age at interview and age at diagnosis; n (%) is displayed for all other characteristics.
Data were missing for one participant (3.70%).
Themes
Six overarching themes emerged: signs and symptoms, risk factors, system-level factors, quality of life, social support, and reflection (Table 2). Within each overarching theme we identified two to three subthemes.
Table 2.
Overarching Themes and Subthemes (N=27)
| Theme | n | Subtheme | n |
|---|---|---|---|
| Signs & Symptoms | 23 | Self-Misdiagnosis | 15 |
| Provider Misdiagnosis | 14 | ||
| Risk Factors | 27 | Family History | 23 |
| Lifestyle | 21 | ||
| Blame/Defensiveness | 11 | ||
| System-Level Factors | 27 | Provider Recommendations | 14 |
| Navigating Care/Pace of Treatment | 17 | ||
| Perceptions of Medical Workers | 26 | ||
| Quality of Life | 26 | Fertility or Sexual Health | 19 |
| Mental Health/Therapy | 20 | ||
| Self-Advocacy | 9 | ||
| Social Support | 27 | Support Groups | 20 |
| Family, Friends, and Others | 19 | ||
| Reflection | 27 | Prevention | 23 |
| Personal | 27 | ||
| Advocacy | 9 |
Signs and Symptoms
Participants reported signs and symptoms that initially led them to visit a health care provider and ultimately to their EOCRC diagnosis. These often-included blood in the stool, abdominal pain or cramping, changes in bowel movements, and fatigue. Participants largely discussed these signs and symptoms in terms of diagnoses other than CRC. Two subthemes emerged: self-misdiagnosis and provider misdiagnosis.
Self-misdiagnosis.
The signs and symptoms they experienced led many participants to try to self-diagnose before seeing a provider. Participants reported thinking their signs and symptoms indicated hemorrhoids, ulcers, gallbladder stones, stomach infections, irritable bowel syndrome, ulcerative colitis, or celiac disease, or were related to diet. Some participants delayed seeing a provider because of their self-misdiagnosis.
“…what I thought were hemorrhoids turned out to be stage 3 colorectal cancer.”
“…I thought it was…diet related, so I didn’t urgently…seek a doctor.”
Provider misdiagnosis.
Participants said providers often offered a diagnosis other than CRC, such as hemorrhoids, gallbladder stones, or celiac disease, and that this misdiagnosis delayed their CRC screening.
“…the doctor…was, like, oh, it’s probably just hemorrhoids.”
“…and [the provider] said up your fiber. You probably have IBS. Do I need a colonoscopy? Yeah, maybe in 10 years.”
Some participants said their misdiagnosis was attributed to their age or other characteristics.
“I was mildly anemic, but it was dismissed as being a woman and a vegetarian.”
Risk Factors
The interviewer read a list of CRC risk factors from the American Cancer Society and asked participants about their experience with these factors. Their responses were largely captured by three subthemes: family history, lifestyle, and blame/defensiveness.
Family history.
Participants with a known family history of CRC were aware that this increased their risk.
“I was the fourth generation [in our family] to be diagnosed.”
However, not all participants knew they had a family history of CRC prior to their diagnosis. Some attributed this to CRC not being discussed in their families. Others were unaware that CRC could affect younger populations.
“I didn’t realize that I had such a heavy family history in CRC; it just wasn’t talked about in my family.”
“[I thought CRC was] for older men…no way younger people could get it.”
Lifestyle.
Some participants said they fit some lifestyle-related CRC risk factors (e.g., moderate to heavy alcohol use, diet high in red and processed meats, overweight).
“Obviously red meats, processed meat…. It’s just part of our diets.”
“…I enjoyed my college life, and then afterwards, a lot with partying and drinking too much and did not eat healthy.”
Blame/defensiveness.
Participants expressed feelings of blame or defensiveness regarding whether their lifestyle led to their EOCRC diagnosis. Some said they felt this way because they had no lifestyle-related risk factors. Others noted that people without EOCRC often have the same risk factors.
“It was like okay, I don’t have that, don’t have that…. I still got cancer.”
“…do I think alcohol contributed? Absolutely…. was I drinking the same exact amount with all the people I was drinking with? Absolutely. Do they have CRC? Nope.”
System-Level Factors
Comments relevant to this theme often related to whether participants’ providers recommended CRC screening or seeing a specialist, their experiences navigating care, or their thoughts about their interaction with medical workers before and after their diagnosis. Three subthemes emerged: provider recommendations, navigating care/pace of treatment, and perceptions of medical workers.
Provider recommendations.
Participants frequently said their providers did not recommend a CRC screening test other than colonoscopy; participants were seldom given stool-based CRC tests.
“…colonoscopy was…the only option. I wasn’t even aware there were any others….”
Participants expressed appreciation when their initial provider referred them to a specialist.
“…[the provider] said–I’m going to refer you to a great doctor–and he did….”
Navigating care/pace of treatment.
Participants identified barriers related to navigating their medical care and the pace at which their treatment progressed.
“…it took a while …from like navigating the medical system to actually see a doctor.…”
“I had to go through my primary care doctor ‘cause I had signed up for a colonoscopy…you have to get a referral.”
One participant reporting feeling their care was delayed due to racial/ethnic bias.
“…because I was a minority…I…felt like they were dragging their feet…”
Other participants said that from diagnosis to treatment “everything…happened in a very short span of time.”
Perceptions of medical workers.
Many participants described positive perceptions of their nurses or medical teams.
“I have such…respect for the nurses that cared for me.”
“…all of these people that…were like, ‘We’re going to help you live,’ that just made them my heroes.”
Others reported negative perceptions based on their initial treatment.
“I had to do some…soul searching about how I felt about medical professionals…I was treated badly.”
“I felt like [the doctor]…brushed me off.”
Some participants described experiencing discrimination based on age, gender, or race/ethnicity.
“…medical workers…maybe being dismissive towards me because I’m a woman, and I’m younger.”
“…one doctor said, you people are usually pretty tough, why do you feel like you need your pain medication?”
Quality of Life
Participants were asked whether medical workers recommended ways to address CRC treatment–related quality-of-life issues, including fertility, sexual health, and mental health. Their responses were largely captured by the following three subthemes: fertility or sexual health, mental health/therapy, and self-advocacy.
Fertility or sexual health.
Both female and male participants said providers seldom recommended ways to address post-treatment fertility or sexual health issues.
“I wasn’t offered the opportunity to retrieve my eggs or move my ovaries out of the way for radiation.”
“I didn’t even think about [sperm preservation] until …I was about to begin radiation. They said…because you’ve been through chemo, we can’t freeze your sperm.”
“I didn’t do pelvic floor therapy until eight years after my diagnosis….”
Mental health/therapy.
Participants expressed mental health concerns and pursued therapy. Some described experiencing heightened anxiety.
“…it did take a toll – on my mental health…I didn’t think I was gonna survive….”
“…I did have a counselor…that I spoke with during each one of my treatments.…”
“I started to have panic attacks…so my doctor recommended…counseling….”
Some participants said their medical team did not recommend ways to address their mental health issues.
“…mental health…that’s the one area that I felt the need wasn’t being met for the first several years of my diagnosis.”
Self-advocacy.
Participants often emphasized self-advocacy or the need to put their quality of life before their medical team’s decisions.
“…he [the provider]…said, do you want a long life or do you want babies, and…I said, I want both.”
“…I think it’s really important…to balance…the need to…get treatment and be alive, right? With the quality-of-life issues.”
Social Support
Support groups and family, friends, and others emerged as subthemes of this theme. Participants often found support groups through social media platforms such as Facebook, and sometimes through their treatment center or community (e.g., church).
Support groups.
Participants said they found the most social support in interactions with other CRC survivors.
“They had the same treatments, the same issues with treatment…I just happened to be younger…. having that support group really…helped me out.”
“[Having someone] knowing and validating that we are going through the same emotions…was very powerful and very uplifting.”
Family, friends, and others.
Participants described receiving support from family, friends, and other important people (including the medical team). Several participants credited their spouses.
“I just have an amazing support system in my family, …and my wife is just unbelievable….”
“…my husband, at the time, was a big support, too.”
Family, friends, and other important people often provide instrumental support, such as help related to treatment or day-to-day activities.
“…my husband was the one who…did all the research….”
Some participants described social support in terms of connections with people who could help them obtain the best care.
“…through connections…with my best friend…and then my surgeon knowing people, …I got pretty much the top oncologist….”
Reflection
The final overarching theme emerged from participants’ reflections on the advice they would have given themselves five years before their diagnosis. Three subthemes emerged: prevention, personal, and advocacy.
Prevention.
Many participants reflected on lifestyle behaviors that increased their CRC risk. Several participants expressed concern about having overlooked symptoms. Some discussed prevention strategies.
“…definitely eat healthier…don’t eat the processed stuff.”
“Looking back, there’s things that I think were symptoms. But at the time, they weren’t.”
“I probably would’ve dig [sic] deeper into my family history.”
Personal.
Experiencing CRC led many participants to reconsider what was important in life.
“I would have told myself to do what I love to do.”
“…Travel more…do more outlandish things…just don’t be afraid, I guess.”
Participants also expressed future-oriented reflections.
“…looking forward to my family.”
“…the biggest thing for me right now is truly survivorship.”
Some participants said they would not change anything.
“…it is part of who I am and part of…my story.”
One participant stated that their life improved.
“…my life just started to…exponentially get better….”
Advocacy.
Participants frequently expressed wanting to increase awareness of EOCRC and help others avoid similar experiences.
“I hope to use my experiences…to…be an advocate.…”
“…raise awareness for young-onset CRC and hopefully convince the medical community to push the screening age even lower than 45.”
Discussion
We examined the lived experiences and perceptions of adult EOCRC survivors living in the United States. Two unique aspects of our study design were recruiting participants via tailored marketing materials that included pictures of influential EOCRC survivor advocates and their age at diagnosis and having a member of our EOCRC AST lead the interviews. Our study is also novel in that it targeted a national sample, in contrast to most previous qualitative studies that either relied on samples from distinct populations such as advocacy groups or specifically addressed female-centric issues or online community groups. Our approach of involving survivor advocates from recruitment to data collection and dissemination enriches our study of the lived experiences of EOCRC survivors and permitted our recruitment efforts to be far-reaching across the United States.
We identified six overarching themes, each with two to three subthemes. Our findings within these themes and subthemes can inform comprehensive care for patients with EOCRC.(25,26)
Signs and symptoms.
This theme captured an important aspect of patients’ cancer trajectory, as signs and symptoms are key to identifying and diagnosing EOCRC. Reported signs and symptoms such as blood in stool, abdominal pain or cramping, and changes to bowel movements are consistent with findings from both prior qualitative studies and more-recent quantitative research.(10) The provider misdiagnosis subtheme (also recently identified by Araujo et al.(27)) has not been previously described. We also identified a self-misdiagnosis subtheme that implied participants who misdiagnosed themselves delayed seeking care, particularly for CRC screening. These findings highlight a need for EOCRC-related education targeted to both providers and the public.
Participants reported the extent to which known CRC risk factors applied to their experience, but said these factors were not key determinants of their diagnosis. Although family history was the most frequently reported risk factor, not all participants were aware of their family history of CRC. Future interventions should include more dialogue about CRC family history, and clinicians should emphasize the importance of informing family members about a CRC diagnosis.
Participants were defensive about lifestyle risk factors such as alcohol consumption or diet. Several did not have such risk factors and still developed CRC or had risk factors, but knew people with the same risk factors who did not develop CRC. Etiologic studies have reported the occurrence of EOCRC in individuals with and without clear risk factors.(1) Heterogeneity in EOCRC etiology limits prevention efforts and potentially decreases public acceptance of CRC risk factors. Future research should investigate EOCRC risk factors, exposure timing, and public perceptions and risk definitions related to EOCRC.(28,29)
System-level factors.
Three subthemes of this overarching theme emerged: provider recommendations, navigating care/pace of treatment, and perceptions of medical workers. The major reason why people do not seek CRC screening is lack of a provider recommendation to do so.(30,31) Study participants noted this barrier and a lack of shared decision-making and explanation of screening options, underscoring the need for provider education and uniform screening programs that reduce provider variability and improve health equity.
Participants perceived navigating the health system as a barrier. The use of patient navigators trained to help patients navigate the screening, diagnosis, and treatment continuum has been found to be the single most effective intervention to ensure timely CRC screening completion.(32,33) Yet while participants were generally appreciative of their care team, many also reported frustration due to a lack of help with navigation.
Quality of life.
This theme highlights the significant impacts of EOCRC on reproductive, sexual, and mental health. EOCRC strikes during the reproductive years and treatments such as surgery, radiation, and chemotherapy impair fertility; however, both female and male participants reported that reproductive and sexual health considerations were frequently not addressed. The unmet need for sexual health information may stem from the lack of resources tailored to the EOCRC population. A 2022 multi-method online survey of reproductive health experiences among female EOCRC patients revealed similar gaps in care, including a lack of discussion between patients and providers about reproductive and sexual health.(34) Also in 2022, an online survey of female and male young adult rectal cancer patients on their experiences with fertility preservation reported a lack of discussion of this issue by doctors and low rates of fertility preservation (e.g., sperm banking among males, egg/embryo banking among females).(35) Our current study builds on these prior studies by including both males and females across the entire spectrum of EOCRC, highlighting fertility preservation as an unmet need for patients with EOCRC. Nevertheless, a more all-encompassing national survey is warranted that further investigates these factors as well as others identified in our study.
Recent population studies in the United States have shown an increased risk of anxiety and depression after a CRC diagnosis.(36,37) Our identified mental health subtheme adds a patient perspective to such quantitative studies and, along with the self-advocacy subtheme, identifies gaps in EOCRC care. Prior studies have reported patients’ perspectives on self-advocacy in relation to earlier EOCRC diagnosis and access to treatment; our findings also highlight the significance of self-advocacy in addressing CRC’s impacts beyond physical health.(10)
Social support.
Participants found high value in both support groups and normative support. Social support has been shown to improve resilience and quality of life, and is associated with reductions in anxiety and depression across age, race, and ethnicity(38,39), as well as improved outcomes and overall survival.(38–40) Medical providers and future researchers should assess the social support available to EOCRC patients, encourage the development of support networks, and guide patients to sources of peer support (e.g., CRC Change, The Colon Club, Man Up to Cancer). Sources of support may be a particularly important consideration for patients with EOCRC given their younger age. A previous survey of patients with CRC showed that those diagnosed before 50 years of age (i.e., with EOCRC) were more likely to use the Internet for cancer information and support than those diagnosed at age 50 years or older.(41)
Reflection.
EOCRC diagnosis and treatment increased participants’ awareness of CRC risk factors and symptoms, leading them to reflect on risk factors they might have reduced, signs and symptoms they might have missed, and family history they wished they had known more about. This finding is worthy of further exploration as it may have significant implications for educating the public and raising awareness through educational resources tailored to younger populations and focused on EOCRC risk factors, screening benefits, and postoperative care.(42,43) Also, given our participants’ passion for advocacy, EOCRC survivors may be instrumental in informing patient navigation, survivorship care, research studies, and interventions.
Finally, participants described experiencing positive changes following their EOCRC diagnosis, such as developing new perspectives on life priorities and new connections with community members and organizations. The psychosocial needs of EOCRC patients should be emphasized during treatment and throughout survivorship.(25) Moreover, given the importance of sexual and reproductive health concerns to study participants, care provided immediately post-diagnosis - along with discussion of fertility-preservation options - is just as important as meeting EOCRC patients’ psychosocial needs .
Our study has several strengths; however, some limitations are worth noting. First, because our recruitment (e.g., social media) and data collection (e.g., interviews via Zoom) methods were primarily internet-based, study participants represented a population with both internet access and literacy. For this reason and because our sample consisted predominantly of women self-identifying as Non-Hispanic White and of long-term survivors who had internet access, our findings may not be generalizable to other subgroups of EOCRC survivors. However, Non-Hispanic White adults have seen the largest percentage increase in EOCRC, while incidence rates of EOCRC in people younger than 45 years are comparable for men and women.(3,44) Although our efforts to recruit a sample that reflected racial/ethnic and gender diversity fell short, we did meet our goal of capturing a geographically diverse sample. As no studies to date have been successful in systematically and qualitatively addressing EOCRC-related experiences specific to racial/ethnic subgroups, future research in this area is urgently needed.
Second, the EOCRC survivor who moderated the interviews occasionally diverged from the research protocol by sharing opinions that may have influenced participants’ responses. Since moderator bias is a known challenge associated with focus groups, our analysis team (KMK, EB, TNR) thoroughly reviewed all transcripts during coding and, to ensure unbiased data extraction, collectively decided to exclude two conflicting interviews from analysis.(45)
Lastly, our study was not designed to allow inferences about a directional relationship between identified themes (e.g., whether system-level experiences caused reflections) or whether these themes were unique to EOCRC survivors as compared with CRC patients diagnosed at age 50 years or older. However, our study’s rigor and innovation resulted in instrumental insights for future research focused on increasing EOCRC awareness and patient advocacy efforts.
The alarming rise of CRC diagnoses among people aged under 50 years is a persistent public health emergency that has been documented since the mid-1990s. Our study highlights the importance of considering the lived experiences and perceptions of EOCRC survivors both in future interventions targeting this population and throughout survivorship, while also educating healthcare providers and the public about the increasing risk of EOCRC and destigmatizing conversations about bowel and gut health. Given the unique association of EOCRC diagnosis with lifestyle changes and psychosocial challenges, as shown in our study, patients must be agents in their care throughout the continuum from diagnosis to treatment to survivorship.
Supplementary Material
Acknowledgements
The authors extend their gratitude to the participants who made the study possible, to Phuong Gallagher, Walter Hickman, Curt Pesmen, and Allison Rosen for marketing support, and to Eleanor Mayfield, ELS, for editorial support. This research—led by C.R. Rogers who received all funding—was supported by the V Foundation for Cancer Research, 5 For the Fight, the Medical College of Wisconsin, Huntsman Cancer Institute, and the National Cancer Institute (Grant K01CA234319), an entity of the National Institutes of Health (NIH). The content is solely the responsibility of the authors and does not necessarily represent the official views of any of the funders.
Footnotes
Conflict of Interest: Although unrelated to this study, Dr. Charles R. Rogers offers scientific input to research studies through an investigator service agreement with the Exact Sciences. The authors declare no conflicts of interest.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data generated in this study may be available upon request from the corresponding author and with the permission of the Medical College of Wisconsin IRB.