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Original Article

Shared experiences of diagnosis and treatment of young-onset colorectal cancer: a patient-oriented qualitative study

Araujo, Louisea,b; Breau, Genevievea,b; George, Manjuc; Dau, Halliea,b; Gastonguay, Louisea,b; Brown, Erika Hansonc; De Vera, Mary A.a,b,∗

Author Information
Journal of Psychosocial Oncology Research and Practice: March 2020 - Volume 2 - Issue 1 - p e17
doi: 10.1097/OR9.0000000000000017
  • Open

Abstract

Introduction

Colorectal cancer (CRC) is the third most common cancer and the fourth leading cause of mortality of all cancers worldwide.1,2 Recently data from, the International Agency for Research on Cancer from 12 countries suggests the incidence of young-onset CRC (yCRC), that is among adults <50 years of age, is increasing with an annual percent change in incidence (APCi) ranging from a low of 0.32 (95% confidence interval [CI], 0.01–0.64) in Italy to a high of 9.20 (95% CI, 6.85–11.59) in Brazil.3 A recent systematic review conducted by our research team examined the incidence and prevalence of yCRC across 12 countries. Meta-analyses of trend estimates yielded a pooled APCi of + 1.33 (95% CI, 0.97–1.68; P < 0.0001). The reasons for this increased risk have not been studied conclusively, although a recent meta-analysis by our team has identified modifiable risk factors such as cigarette smoking, excessive alcohol consumption, and obesity as likely contributors.4

With increasing incidence of yCRC5 comes the need to better understand individuals’ experiences with yCRC. Relevant to yCRC patients, digital technology and the Internet has opened a new avenue for cancer awareness and patient and caregiver support.6 In a 2016 survey of 122 young adults with cancer, 41.6% of respondents indicated that digital communication was very important.6 Our survey of health seeking behaviors among individuals with CRC indicated a higher proportion of respondents with yCRC (91.5%) use the Internet for seeking cancer information and support as compared with those diagnosed with CRC over the age of 50 years (87.3%, P < 0.05).7 Social media, particularly Facebook, is used to share cancer-related experiences, promote awareness, and provide support.8,9 One such group, COLONTOWN®, an online CRC community of >4500 members, including patients and caregivers, which was launched in March 2013 as a “secret” Facebook group with the purpose of offering peer support and raising awareness of CRC. In March 2019, during CRC Awareness Month, a thread was initiated in COLONTOWN® to capture the experiences of individuals with yCRC, which reflected a high degree of engagement among members as well as an eagerness of individuals to share their experiences. This thread also led to the question on untapped opportunities for educating individuals about yCRC beyond this online group and the potential role of research to facilitate this. We conducted patient-oriented research—defined as the meaningful and active collaboration in priority setting, conducting, and translating research10—that draws from inspiration and collaboration with COLONTOWN® to better understand the lived experiences of individuals with yCRC from their perspectives or from their caregivers.

Methods

Study design and context

We designed a qualitative study that reflects the original thread in COLONTOWN®. Specifically, we used an online survey comprised of 2 sections: 5 close-ended questions on demographic characteristics and 1 open-ended question asking participants to share their yCRC experiences in a text box, using the wording from the original thread in COLONTOWN® (“please use the box below to write a story of your [or your patient's] diagnosis, treatment, and colorectal cancer journey without any identifying information”).

Recruitment

Recruitment for the study occurred from May 11th, 2019 to June 11th, 2019. Individuals were invited to participate if they: were diagnosed with yCRC; or were a caregiver to a patient diagnosed with yCRC; and able to respond in English. Inclusion of caregivers was a recommendation by patient research partners and reflects our intent to reflecting the original thread in COLONTOWN®, which also involved contributions from caregivers. To recruit members of COLONTOWN®, including those who shared their experiences in the original thread, the principal investigator (who is a member of COLONTOWN®) shared a post about the study which included eligibility and a link to the online study and consent form. After indicating their consent, participants were directed to the online survey, given the option to write a “new” story or provide their Facebook username so that the principal investigator could locate the story shared in the original thread. To recruit individuals beyond COLONTOWN®, we advertised the study using other social media platforms including Twitter and Instagram. We also sent an email to individuals with CRC who have previously participated in studies by our research group and indicated that they were willing to be contacted regarding future studies (N = 439). The email included a link to the study information and consent form and online survey.

Analysis

Responses to the open-ended survey question were primarily analyzed using an eclectic code method which, as described by Saldana,11 is a first-cycle coding method that draws on several analytic methods, although it utilizes an inductive process. Through this process, we found that stories were structured in a way that was a chronological depiction of experiences at diagnosis, treatment, and post-treatment of yCRC. Within each stage, an inductive process was used to identify common themes arising from the data, using a constant comparison method.12 We used QSR International's NVivo 12 software to assist with the qualitative analysis.13 Rigor was maintained through maintaining an audit trail of decisions, and discussion of the findings among team members.12 Finally, where available from responses to the open-ended survey questions, we extracted information on symptoms, yCRC stage, treatment received for yCRC, and family history of CRC, grouping these into relevant categories and calculating frequency counts and percentages, using SPSS Statistics Version 25 (SPSS Inc, Chicago, IL).14

Ethical approval and consent

Ethical approval was sought and obtained from the University of British Columbia Behavioral Research Ethics Board (approval number H19-01153). Data were stored securely using an online survey platform meeting institutional and jurisdictional privacy requirements. Participants provided informed consent before participating in the survey. Confidentiality of the participants was maintained.

Results

During the month-long recruitment for the study, we gathered responses from 157 individuals; 37 were excluded due to incomplete responses or respondents not meeting inclusion criteria. Among 120 respondents, 50 (42%) were members of COLONTOWN® with 9 providing consent for the principal investigator to obtain their post to the aforementioned original thread. The majority of respondents (n = 109, 91%) were individuals with yCRC, whereas 11 were caregivers, who provided demographic information for the individual with yCRC they cared for. As shown in Table 1, which summarizes characteristics individuals with yCRC, the majority were females (86, 71.7%), diagnosed between the ages of 30 and 39 (49, 40.9%) and 40 and 49 years (61, 50.8%), and had completed treatment (74, 61.7%).

Table 1
Table 1:
Characteristics of individuals with yCRC (n = 120) based on self-report by respondents and/or by caregivers.

Responses varied from a single word response up to 2738 words with a mean of 281 words. Extracted yCRC characteristics, where available from experiences, are summarized in Table 2. In the majority of experiences (70, 58.3%), symptoms experienced before yCRC were described with blood in the stool (35, 50.0%) and abdominal discomfort/digestive issues (32, 45.7%). In half of experiences (62, 51.7%) respondents did not mention stage. However, among those that did, most had Stage 3 (26, 21.7%) or Stage 4 (18, 15.0%) yCRC.

Table 2
Table 2:
yCRC characteristics extracted from stories shared by respondents.

Using inductive analysis, we identified 8 themes: symptoms experienced; being misdiagnosed; advocating for oneself; appreciation of the healthcare team; frustration with the healthcare team and healthcare system; lasting effects of yCRC and its treatment; connecting with others; and reflections on experiences with yCRC. We describe these themes, including representative quotes below. Further exemplar quotes for each theme are found in Table 3.

Table 3
Table 3:
Themes on experiences with yCRC and representative quotes from stories shared by respondents.

Theme 1: symptoms experienced

The first theme captured the symptoms respondents experienced before yCRC diagnosis. The most frequently reported symptom was rectal bleeding with descriptions such as “seeing blood in the toilet bowl after a bowel movement,” “bloody water following a bowel movement,” “red blood on the toilet paper,” and “I happened to notice a streak of dark blood”. Many respondents shared symptoms such as fecal urge incontinence, diarrhea, and constipation that are not specific to yCRC, and thus did not lead to any initial suspicion by physicians of yCRC. Due to more significant impacts on respondents, some symptoms, for example fatigue and pain, led to healthcare seeking.

“One day my fatigue was worse than usual. I couldn’t get out of bed… I had intense abdominal pain. I [went to the] ER. [A] CT scan showed a large colon mass.” (female, diagnosed age 30–39)

Thus, although some participants reported symptoms that were more closely related to gastrointestinal distress, other symptoms were more general, such as fatigue.

Theme 2: being misdiagnosed

The second theme described a common experience by many respondents of being misdiagnosed before yCRC diagnosis. Given Theme 1, with the nature of nonspecific symptoms not always indicative of CRC this resulted in many experiences of delayed diagnoses. Some respondents also recalled unsupportive attitudes of physicians towards their concerns, with commonly reported misdiagnoses including constipation, hemorrhoids, irritable bowel syndrome, and iron deficiency anemia.

“Four months prior [to diagnosis] I had a doctor tell me that my rectal bleeding, constipation, and tailbone pain was because of constipation and nothing more because I was ‘so young’.” (female, diagnosed age 20–29)

Respondents described disbelief from their physicians and were often told they were too young to have CRC. One caregiver recalls her spouse taking a photo of his bloody stool so that his physician would take action:

“The doctor asked if he had hemorrhoids [but didn’t do an exam]. [The doctor] recommended he try a gluten/dairy-free diet for three months to see if the symptoms improved. They didn’t … he brought a photograph of the bloody water following a bowel movement [and was] sent to have a colonoscopy.” (caregiver to husband, diagnosed age 40–49)

Respondents experienced both physical (eg, pain) and psychological (eg, worry) impacts before their yCRC diagnosis, with many sharing loss of confidence and feeling unsure about going back to their physicians after their concerns had been initially dismissed. Many respondents questioned the impacts of misdiagnosis and accompanying delays to the progression of their yCRC before diagnosis:

“Had he been a decade or more older, his symptoms likely would have sent up a red flag. But because he was a young adult, a much more serious possibility wasn’t recognized.” (caregiver to husband, diagnosed age 30–39).

Thus, some participants had their symptoms initially misdiagnosed, and some participants felt this was due to their age.

Theme 3: advocating for oneself

The third theme expressed a conviction among respondents on advocating for oneself, stemming from experiences with being misdiagnosed or dismissed by their health professionals. With many respondents being told that they were too young to have CRC, they described great efforts on their part to obtain diagnostic tests: “I had to fight for a colonoscopy” (female, diagnosed age 30–39 years). Many respondents also experienced months of being told nothing was wrong, and they sought out advice from multiple physicians. This lack of action from physicians contributed to respondents’ resignation. In one case, witnessing another individual with yCRC rekindled their fight for themselves:

“I had given up getting help, but after seeing a friend younger than me diagnosed with colorectal cancer, I tried one more time.” (female, diagnosed age 30–39)

This quote illustrates that many participants had the experience that they needed to advocate for themselves, and this was advice they gave to others facing the same symptoms.

Theme 4: appreciation towards the medical team

The fourth theme describes respondents’ appreciation towards their healthcare teams. As one respondent described, “I was lucky to have a great colorectal surgeon. He saved my life” (female, diagnosed age 40–49 years). Although respondents described treatment complications, for example with surgery or chemotherapy, many were still thankful to their physicians.

“…I’ve been asked if I still have confidence in my oncologist and the answer is yes, absolutely. I think that part of the issue of being diagnosed when we are younger is that we often look great, feel good, and perhaps bounce back more quickly.” (female, diagnosed age 40–49)

This theme also reflected that some respondents understood that their physicians might not have considered diagnoses of yCRC as they themselves may not have experiences with this disease. Nonetheless, respondents were still able to appreciate that once the CRC was found, physicians were delivering the best possible care.

Theme 5: frustration towards the medical team and healthcare system

The fifth theme captures negative experiences that respondents had with their medical teams. Related to the second theme of being misdiagnosed, many respondents had multiple physicians tell them that they were fine or others that did not take their complaints seriously:

“I believe the medical system is broken. It rewards doctors on the amount of patients they see as opposed to the amount of correct diagnosis they make.” (male, diagnosed age 40–49)

With many respondents being previously misdiagnosed, many harbored negative feelings toward their physicians by the time they started treatment. During treatment, respondents also indicated wishing they had been involved with decision-making or had physicians listen to their concerns, particularly when experiencing adverse effects or complications:

“I knew something was wrong but no one believed me.” (female, diagnosed age 40–49).

Thus, although feeling unheard and initially misdiagnosed, some participants felt this lack of awareness continued into their treatment phase.

Theme 6: lasting effects

The sixth theme describes the lasting effects of yCRC and its treatment, which includes physical, mental, and emotional effects and financial impacts. Most physical effects shared in experiences relate to lasting side effects of yCRC treatment, particularly chemotherapy, such as ongoing neuropathy (numbness or weakness owing to peripheral nerve damage):

“Neuropathy makes physically touching people unpleasant.” (female, diagnosed age 40–49)

Other physical effects are the consequence of surgery to remove the tumor, which includes incontinence, loose and frequent bowel movements, and constipation. Although it is often the physical effects that people worry about, there are also mental and emotional effects of yCRC, with respondents experiencing depression, anxiety, and fear that the cancer might return: “I still have the fear every day that it will come back” (female, diagnosed age 40–49 years). Many respondents, particularly those who have completed treatment and declared “cancer-free,” shared feelings that have been described as “survivor's guilt”:

“Depression, survivors guilt, anxiety issues, which have taken almost another year … to pull myself out” (male, diagnosed age 30–39).

Experiences also highlighted the lasting financial impacts of yCRC. Aside from the costs of treatment and medications as well as the costs of travel to and from medical visits including treatments, there are also costs associated with loss of time from work both by patients and their caregivers. Many respondents emphasized that financial stress from yCRC continues even after completion of treatment.

“I have been back to work for 3 years, my daughter is 10, and we are digging out of the debt that travelling for cancer appointments and medications has left us in.” (female, diagnosed age 30–39)

Therefore, many participants experienced negative consequences of their cancer, and included both physical and financial aspects.

Theme 7: connecting with others

The seventh theme describes the importance of connecting with others, including sharing advice and belonging in a community. Many respondents felt that sharing advice on dealing with yCRC gave meaning to their own suffering. For those who may be facing an yCRC diagnosis, important advice was for individuals to advocate for themselves, especially if experiencing symptoms and being dismissed by physicians. With the majority of respondents (61.7%) having completed treatment for yCRC, many also shared advice and recommendations that might make treatment and recovery easier for others.

“If I had one thing to say, it would be that I exercised all through treatment (even doing modified pilates with my ileo bag), and continue to do so. It wasn’t always vigorous, but it always made me feel better, and has allowed me to recover from surgeries a little more quickly and completely. Oh, and drink water. Helps with the bowels.” (female, diagnosed age 40–49)

Finally, this theme touched on the importance of being able to connect with other individuals with yCRC as only they can relate “in a way that no else can” and value of communities such as COLONTOWN® that provide the means to do this.

“I was fortunate to have friends who had been through cancer for support … Each day is a gift and makes me realize what is really important.” (female, diagnosed age 40–49).

Theme 7 highlights the need for individuals diagnosed with yCRC to connect with a community to not only share advice, but seek it as well.

Theme 8: reflections on the experiences with yCRC

The eighth and final theme encapsulates respondents’ experiences with all aspects of yCRC—reflections on what they had gone through or going through, how they were feeling or doing when they shared their story, and their worries and hopes for their futures. The range of emotions associated with facing a devastating disease was captured by realist sentiments:

“People say they learn tremendous lessons and notice blessings along their cancer journey, but they’re just making that up…. Cancer and chemotherapy are terrible.” (female, diagnosed aged 40–49)

The concept of a living a “new normal” was also touched on in some experiences, along with optimist sentiments:

“I know that I will never be “normal” again after having cancer but I am thankful to be alive with no evidence of disease and I live the best I can with the residuals of my treatments and surgeries.” (female, diagnosed age 40–49)

Theme 8 further illustrates the importance of connecting with others, as previously discussed. Shared experiences revealed how membership in online communities and support groups helped with the process of recovering. On reflections, many respondents found it hard to comprehend what happened to them and being able to share experiences with other people who have been diagnosed with cancer at younger ages—including yCRC—helped them solidify their experience.

Relationships between themes

Identified themes fit into the chronology of experiences with yCRC at diagnosis, during treatment, and after treatment as depicted in the thematic map in Figure 1. The period during diagnosis shows how the sequence from Themes 1 to 3 with symptoms experienced, leading to healthcare seeking that often led to dismissal or misdiagnosis, and respondents having to advocate for themselves before receiving their yCRC diagnosis. Respondents’ views of their healthcare team and their healthcare systems were captured by Themes 4 and 5, particularly within the period during treatment. Finally, with many respondents having completed treatment, aspects touched by Themes 6 to 8 include the lasting effects of yCRC, the importance of connecting with others with the same experience, and reflections on their experiences.

Figure 1
Figure 1:
Schematic of sequential themes constructed in the qualitative analysis of yCRC experience. Black boxes at the bottom of the figure highlight the timeline of the yCRC experience. Themes are shown in boxes above the timeline. Solid black arrows depict the relationship between themes. yCRC = young-onset colorectal cancer.

Discussion

We conducted a patient-oriented, qualitative study in partnership with COLONTOWN®, a private online community for individuals with CRC, with the aim to better understand their experiences. Applying an inductive analytic approach resulted in identifying eight themes: symptoms related to diagnosis, treatment, and living post CRC-treatment. We determined the key implication of these findings is that they highlight the need for yCRC-related information and support that is unique to this patient population. Also important, that with our partnership with COLONTOWN®, this study demonstrates the intersection between research and awareness—which are both needed as incidence rates of yCRC continue to rise.

Qualitative studies characterizing the experiences or perspectives of patients with yCRC are very limited. Of particular interest is a recent study by Blum-Barnet et al15 in 2019 exploring the financial and quality of life burden of yCRC in focus groups with 14 patients and 1 caregiver. Authors identified 2 themes of financial impacts and quality of life impacts, each with subthemes including employment, emotional side effects, and physical side effects. These findings are consistent with the theme identified in our study on the lasting effects of yCRC and its treatment, which included physical, mental, and financial impacts. In addition, a similarity is the patient-oriented approach employed in both, with Blum-Barnet et al conducting their study among members of a CRC advocacy group and our collaboration with an online CRC community in our study, which highlights the importance of working with such groups to magnify the patient voice in research. Indeed, through both approaches, a shared implication of both studies is identifying the need for yCRC-specific support. Nonetheless, with richer themes found in our study, we contrast to Blum-Barnet et al's approach of focusing on 2 aspects of yCRC, we asked respondents in our study to respond in an unstructured way that allowed what they found important in their experiences with yCRC to be portrayed naturally. Our study found that misdiagnoses and delays in diagnoses (Theme 2) are common. These findings support the finding from the Colorectal Cancer Alliance's annual survey, which reported that 67% of yCRC patients saw at least 2 physicians before being diagnosed correctly. They also found that 71% of patients were diagnosed with late stage cancer, which was consistent with our results.16

Relatedly, advocating for oneself (Theme 3), primarily touched on respondents’ perceptions of needing to advocate for improved identification of yCRC. Indeed, experiences of misdiagnosis and delays in diagnoses are alarming and highlight the need for awareness and education for healthcare providers. A review by Bleyer found that physicians had a more dismissive attitude toward younger patient concerns since they did not suspect that younger patients would have cancer; instead, attributing symptoms to other causes.17 In a retrospective study by Myers et al,18 physicians often diagnosed bowel changes as irritable bowel syndrome or dietary intolerances, and bloody stool is attributed to hemorrhoids. Increased awareness and education for healthcare providers are needed given that younger patients often have a delay in seeking medical attention.18–20

The importance of connecting with others with shared experiences with yCRC (Theme 7) was also key in our study. Given we conducted recruitment online, particularly with working with COLONTOWN® and using social media for recruitment, we took advantage of a unique aspect of yCRC patients in that many are digital native, indicating that yCRC patients seek information online and they are willing to use social media platforms to communicate with peers. As mentioned previously, our team conducted a survey of individuals with CRC and found that those with yCRC were more likely than those diagnosed over the age of 50 to use the Internet for cancer information and support.7 As reflected in Theme 7, online communities provide a means for patients with yCRC to interact with others and share experiences. As with any illness, patients with cancer can feel isolated and alone, although by engaging with other patients through social media, they are able to feel supported.21

Despite being common, CRC often receives less attention compared to other cancers, such as breast and prostate cancer, due to the stigma associated with this disease. Goldman et al conducted a study on CRC stigma among Hispanics and found that CRC screening was stigmatized among the population due to the intimate nature of the exam.22 This stigma leads to lower screening rates compared to other cancers. CRC has also received less attention and research funding. Kamath et al23 conducted a study among 119 nonprofit organizations on the disparities in funding across cancer types in the United States, and found large inequities between cancer types. Specifically, they found that breast cancer had the largest revenue at $460 million dollars and 13 organizations supporting the cause, whereas CRC only raised $18 million dollars across 2 organizations.23 Despite being one of the most common cancers, CRC remained one of the lowest funded, with the authors discussing may be to due stigma as well as associations with high-risk behaviors such as smoking or alcohol abuse.23

Indeed, stigma associated with CRC and its unique set of associated symptoms and impacts, highlights the importance of communities such as COLONTOWN®, which was founded to allow individuals with CRC and caregivers to connect, share, and receive information without embarassment.24 For example, many individuals diagnosed with CRC receive a stoma, which requires training and constant care. Communities like COLONTWON® facilitate the sharing of advice between members who have gone through similar experiences. Furthermore, they also allow individuals to connect on commonalities like geographic area, age, and treatment stage.25 Although such communities, particularly those based on social media platforms, are relatively new, we can expect that they will become increasingly more popular. In 2018, COLONTOWN® grew by 25% to >4000 members.25 Although, this rise in popularity signifies a positive shift in the way that individuals diagnosed with CRC and caregivers connect and share information there are concerns on potential limitations of these forums particularly with spread of misinformation or falsehoods. Nonetheless, a recent systematic review highlights the sensibility of users of these forums, with many seeking information and shared/similar experiences rather than advice.26

Strengths and limitations

A novelty of our study is the partnership with COLONTOWN® and taking inspiration from the original thread that captured experiences of individuals with yCRC. The community was involved in the conduct of this study, supporting recruitment efforts. Aside from maintaining fidelity to the thread in COLONTOWN® that inspired the study, this approach allowed respondents to authentically share what they found important in their experiences with yCRC. Nonetheless, we acknowledge that this approach led to a limitation in that we did not systematically gather pertinent information such as cancer stage and symptoms experienced before diagnosis. Although the Internet-based design of this study is appropriate to the young adult population, this also limited the scope of recruitment in terms of reaching individuals who may not routinely access the Internet or use social media. However, there are associated limitations with use of the Internet, including reliance on convenience sampling with our recruitment, which may lead to noncoverage bias in that the decision to participate is at the discretion of participants and we do not have a means of knowing about those who do not participate.27 We also did not have the ability to track how participants found out about the study as we did not gather this information. Although we used a wide range of Internet-based recruiting methods, the majority of our sample was female (71.7%), which may not necessarily reflect the epidemiology of yCRC, with similar incidence in women and men.28–31 These findings may suggest sex differences in various factors, including motivation for participation in research or experiences with yCRC, that warrant future investigation.

Clinical Implications

Our research demonstrates that yCRC patients are a unique group whose care needs may differ from average-onset CRC patients. Although some yCRC patients felt their health care providers were helpful and supportive, others felt their health care providers did not address their needs. In addition, yCRC patients may experience long-term consequences of treatment, and may need more information from their clinicians on how to best cope with these changes.

Conclusions

Altogether, in gathering experiences from yCRC patients and caregivers and applying an inductive approach to analysis, our study highlights challenges experienced by patients across diagnosis, during treatment, and after treatment. With our unique collaboration with COLONTOWN®, our work also has implications for demonstrating how collaborations between patient and research communities can facilitate education and awareness of yCRC for patients and healthcare providers.

Conflicts of interest statement

None of the authors declare any conflict of interest for this study.

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Keywords:

Cancer diagnosis; Cancer treatment; Colorectal cancer; Survivorship; Young adult; Young adult psychology

Copyright © 2020 The Authors. Published by Wolters Kluwer Health Inc., on behalf of the International Psycho-Oncology Society.