“Too young to have this kind of diagnosis”: A qualitative exploration of younger adults' experiences of colorectal cancer diagnosis

Colorectal cancer (CRC) incidence is rising among adults under the age of 50 (early‐ or young‐onset CRC). This population is more likely to have advanced‐stage disease at diagnosis, suggesting their diagnostic pathway may be prolonged. To better understand factors influencing this pathway, this study explored patients' experiences of decision‐making during a diagnosis of young‐onset CRC.

Although the incidence of colorectal cancer (CRC) is declining in those aged 50 and over, incidence of young-onset CRC (CRC diagnosed in those aged under 50) is rising at an annual rate of 1.33% worldwide, with the largest increases found in Australia and North America. 1 Younger adults are more likely than older patients to have advanced disease at diagnosis [2][3][4] suggesting a longer time to detecting their cancer.
In most countries, younger adults are excluded from populationbased screening programs and only a small proportion are detected after screening for high-risk hereditary syndromes. 4,5Consequently, most younger adults are diagnosed following symptom investigation.
As young-onset CRC patients are more likely than older adults to experience symptom dismissal and misdiagnosis, 6 exploring their decisions and experiences during this period can help to identify reasons for prolonged time to diagnosis.
Previous research with young-onset CRC patients has largely focused on the time to initial presentation. 5,7,8Lack of knowledge of CRC in younger adults and stage-of-life considerations, including work and family commitments, have been identified as influencing this interval.These factors are also likely to influence the entire diagnostic period.Clinician and health system factors also add to the challenges younger adults experience in the time after presentation. 9,10For example, an online survey by the US-based CRC Alliance found over half of the 885 respondents with young-onset CRC were initially misdiagnosed and three-quarters saw multiple physicians pre-diagnosis 9 -findings echoed in the 2020 Never Too Young report by Bowel Cancer UK. 11 Research examining the online narratives of younger adults with CRC found a perceived age bias in clinicians as a barrier to timely diagnosis. 6,12,13Supporting this, analysis of general practitioner (GP) referrals to hospital specialists in the United Kingdom showed a tendency to use a "watch and wait" approach with younger patients, 14 and in a qualitative study GPs reported several issues complicating diagnosis of CRC in younger patients, including the common nature of presenting symptoms and age constraints imposed by referral guidelines. 15ile these findings provide some insight into areas younger adults and clinicians find challenging during diagnosis, there is no qualitative research exploring patients' decisions in the diagnostic period.
The COVID-19 pandemic has had significant impacts on healthcare delivery, as well as patient and provider behaviour, with implications for the diagnosis of CRC. 16A recent systematic review attributed a significant reduction in colonoscopies worldwide to limited hospital capacity, imposed restrictions, and patients' fear of COVID-19 infection. 17In Australia, the number of CRC investigative services decreased by 55% between March and April 2020 18 and hospitals noted significant increases in emergency surgeries and patients presenting with advanced-stage disease with the onset of the pandemic. 16Further work is needed to understand how the COVID-19 pandemic has impacted the decisions of younger adults with CRC.
This study aims to explore experiences of decision-making in Australians with young-onset CRC from the time of initial healthcare consultation to diagnosis and up to the start of treatment.

| Design
A qualitative, semi-structured interview study was undertaken from a critical realist perspective. 19Reporting follows the Consolidated Criteria for Reporting Qualitative Research. 20

| Context
The state of Victoria is the second largest by population in Australia.
Victoria experienced the longest COVID-19 restrictions in Australia with six lockdowns (total 262 days in the capital city, Melbourne) across 2020-2021 impacting delivery of primary care, hospital procedures and capacity constraints, including reduced endoscopy and visitor limits. 16,18,21,22Australian citizens and permanent residents have access to universal public healthcare, Medicare, with the option to purchase additional insurance for private hospital and specialist care. 23GP appointment costs are fully or partially covered by Medicare, with patients paying out-of-pocket costs in the latter instance.Access to diagnostic tests and specialists is generally by GP referral, with appointment times determined by public hospitals, while private provider appointments are booked by patients or their GPs.Tests or treatment at public hospitals are free, while costs are associated with private services. 23

| Sample and recruitment
Participants were recruited from an ongoing survey study assessing diagnostic timeframes for CRC patients above and below age 50.
Participants for this larger study were recruited from 10 treatment hospitals located across Victoria.Hospital staff assessed eligibility and mailed the survey to those aged 18 and over diagnosed with a primary CRC (ICD-10 code C18-20.0) in the previous 9 months, with a reminder six weeks later.Consenting participants returned the survey by mail or online.In the survey, participants could indicate their interest in learning of other studies.Of the 41 participants under age 50 returning a survey between February and mid-November 2022, 23 expressed interest in learning of other studies.
Interested individuals were invited to take part in the interview study by email with a reminder sent 2 weeks later (Participant information sheet, Supplementary file 1).Those consenting booked an interview time and were sent a link for joining the digital platform, with an option to dial in by telephone.Participants entered the study consecutively as they consented to an interview.
Recruitment stopped after 17 interviews as findings were consistent, and no new high-order themes identified.This sample size falls within the range (9-17) considered sufficient to establish data saturation for studies with defined objectives and a homogenous population. 24

| Data collection
Three researchers (Authors RJB, AA, JH) conducted the one-on-one interviews with no repeat interviews conducted.No author had a prior relationship with any participant.The interview schedule (Supplementary file 2) was based on one developed previously 25 with additional input from three young adults with CRC.The interview aimed to assess experiences during the diagnosis process.Interviews lasted between 30 and 75 min.Data was stored securely on a password-protected digital platform only accessible to the research team.Following each interview, the interviewer shared a memo with the other researchers communicating key points and context.Interviews were recorded and transcribed verbatim.Transcripts were not provided to participants for review.

| Data analysis
Patterns of meaning across the dataset were explored through reflexive thematic analysis, 26 led by Author AA.Analysis involved dataset familiarisation using descriptive line-by-line coding to identify latent meaning within the dataset.Candidate themes were identified and developed in discussion with the broader team, leading to refining, defining, and naming of themes.This process was iterative, moving back and forth through phases as understanding of complexity within the dataset progressed.QSR International NVivo 12 (2020) qualitative analysis software was used to store and manage information during the coding process.
To increase trustworthiness, a second researcher (Author JH) independently coded nine interviews.Authors AA and JH met regularly to address bias by discussing ways subjectivity may contribute to differences in coding and understanding of the data.The broader research team regularly discussed the data, allowing insight from differing perspectives to be gained.Authors AA and JH maintained reflexive journals to reflect how their values and assumptions influenced understandings of the data.

| RESULTS
Of 21 people approached, 17 agreed to take part in the interview.
Characteristics of participants are shown in Table 1.Slightly more females (n = 10) than males (n = 7) participated.Ten participants were diagnosed with stage III (n = 6) and IV (n = 4) disease.

Demographic and clinical characteristics n (%)
Age at diagnosis Participants discussed a range of topics relating to the diagnostic process.Five themes were identified.Three themes relate to decision-making experiences: Shifting Perception of Urgency, Multidimensional Perception of Role, and Making the Most of Resources.
The remaining two themes relate to the context surrounding participants' decision-making: Stage of Life and COVID Adds Complexity. Figure 1 illustrates the relationships between themes.
Illustrative quotes supporting themes are shown in Tables 2 and 3 with additional quotes provided in Supplementary Tables S1 and S2.

| Shifting perception of urgency
Nearly all participants described dramatic shifts in perceived urgency throughout the diagnostic process.Participants consistently described a diagnostic process that started slowly before an increase in urgency following diagnostic investigations (Table 2).This shifting sense of urgency was often discussed in association with repositioning priorities.Nearly all participants described shock at this stage.Participants cited efficiency as their top priority when deciding when and where to access further testing, concerned with receiving results quickly to ease uncertainty.

| Multidimensional perception of role
Participants consistently described a multidimensional perception of their role in decision-making (Table 2).When asked directly about their involvement in decisions, most reported a passive role.However, at various points in the interview, nearly all described a more nuanced role, including partnerships with others and self-advocacy in the decision-making process.
T A B L E 2 Participant quotes supporting key themes-experiences of decision-making.While most initially reported a passive role in decision-making, attitudes towards this varied.Many were positive about this, noting a lack of knowledge about the healthcare system.Others perceived this passive role less positively, describing a lack of choices available to them due to the health system they were in, usually the public system.

Theme
However, participants tended to become more active in decisions in the time between probable and formal diagnosis, the period when perceived urgency increased.Several discussed a need for selfadvocacy to access tests and results more quickly, and making decisions in partnership with friends and family members.

| Making the most of resources
Nearly all participants utilised personal resources when making decisions in navigating the healthcare system (Table 2).Common resources included insider knowledge and connection within the healthcare system, personal finances, and family and friends.Several participants described use of resources, including recommendations, as straightforward while others talked about their 'insider knowledge' and 'connections' as resources necessary to enhance speed of care and ease of navigating the system.Some participants referenced personal finances as a resource they used to avoid perceived lengthy waiting times in the public healthcare system.These participants discussed how they opted to pay out-of-pocket costs to access testing in a private healthcare setting more quickly, even if this was financially difficult for them.
Many drew on friends and family as resources that provided emotional support, recommendations, and advice.The advice of family and friends was often associated with problem-solving, particularly when healthcare support was seen as inadequate.

| Stage of life
Participants' stage of life was a contextual factor shaping the decision-making process (

| COVID adds complexity
Participants consistently discussed the COVID-19 pandemic as a factor shaping their decision-making (Table 3).However, the impact of COVID-19 on diagnostic experiences varied depending on the stage of the pandemic and restrictions in place at the time.
Hospital restrictions, including visitor restrictions and the use of telehealth, were commonly discussed, with several participants describing a need to advocate for their partners to attend hospital appointments.Participants discussed extended waiting times for tests and specialist appointments due to the COVID-19 pandemic.Awareness of longer waiting times enhanced the sense of urgency, the need for self-advocacy, and use of personal resources to access care efficiently.This was particularly evident for participants in the public healthcare system, with each describing a long waitlist for colonoscopy.

| DISCUSSION
This study is the first to qualitatively explore the diagnostic decisionmaking experiences of younger adults with CRC in Australia.Themes identified illustrated younger adults' changing sense of urgency, a nuanced involvement in decisions, and use of personal resources to assist decision making.Considerations relating to their stage of life and the COVID-19 pandemic set the context for these experiences.
Whereas previous work identified challenges associated with younger adults' diagnostic process, 6,27  importance of perceptions of urgency both at the individual and GP level during this period.
Previous work has linked GPs' lack of urgency to prolonged diagnostic intervals, with younger adults reporting that symptoms were commonly dismissed by GPs, 6,9,12 and GPs themselves reporting challenges diagnosing CRC in younger people. 15Consistent with others, 14 we found that perceptions of GPs' lack of urgency reinforces an individual's belief that symptoms are not serious.This can lead to individuals delaying making appointments for tests, an important issue for countries where patients may be given responsibility for arranging tests.Raising GPs' awareness of the importance of prompt symptom investigation for younger adults and ensuring strong communication about the importance of tests may address multiple issues, including speed of referrals and speed of patients' attending for testing.
Our study suggests that an individual's involvement in decisionmaking changes substantially throughout the diagnostic process.
Although participants described a passive role overall, they also tended to become more involved in decisions as urgency increased.
Involvement was often associated with specific issues, most commonly the desire to access tests and results quickly.Although there is little research to compare to, our findings share similarities with an Australian qualitative study examining colorectal and breast cancer patients' choice of treatment provider. 25That study reported participants played a passive role in decisions regarding healthcare providers due to a lack of knowledge about providers and limited choices.
However, while in that study urgency was a barrier to involvement in decision-making, our study found urgency increased involvement in decisions.As prolonged time to diagnosis is common in younger adults' with CRC, an increased sense of urgency may facilitate their involvement in decisions about where and when to access healthcare.
We found that participants adapted to challenges during their diagnosis by utilising personal resources including personal finances, insider knowledge, and support of family and friends to access tests more quickly.Studies have noted the use of personal resources in the pathways to cancer diagnosis and treatment, including the role of personal finances. 28Other work has shown young adults with colorectal and lung cancer commonly involve family members in treatment decisions. 29Our findings expand this work by suggesting that the support of family and friends extends to diagnostic decisions.
While previous work from North America has identified stage-oflife considerations associated with young-onset CRC treatment, 28,30 to our knowledge this is the first time they have been explored in the Australian context in the diagnostic period.Our findings are particularly relevant to health care systems similar to Australia's where primary care plays a central role in facilitating access to secondary care services.The life-stage considerations identified in our study were consistent with existing literature, including reproductive plans, 30 career development, 28 and care of young families. 29While previous studies have identified these factors as important in treatment decisions, our study suggests they are also important in diagnostic decisions, with care of young children and busy employment schedules as reasons for prolonging time to testing.
The COVID-19 pandemic's impact on the healthcare system added further complexity to young Australians' diagnostic decisions.
COVID-19 was seen as a reason for prolonged time to diagnosis due in part to its impact on waiting times for tests and specialist appointments.Little is known about the impact of the COVID-19 pandemic on younger adults' experiences of cancer diagnosis.
Although a recent Australian study found no significant change in time between GP referral and colonoscopy during COVID-19, there was a significant increase in patients diagnosed with advanced-stage disease, suggesting delays prior to GP referral. 16Further, as these results reflect CRC diagnosis across all age groups, the impact of COVID-19 on younger adults' diagnosis stage remains unclear.

| Strengths and limitations
Strengths of this study include the recruitment of people with a relatively rare cancer 31 in an under-researched population, and one of the few using a qualitative research design.The response rate was high, with 17 of 21 individuals contacted completing an interview and diversity of our sample in terms of age, sex, cancer types, and stage of disease at diagnosis is a strength.In addition, although the requirement that interviews be conducted in English potentially excluded members of minority groups, English was not the primary language for four of the 17 participants, suggesting the study findings have some relevance to more diverse language and cultural groups.
However, several limitations need to be noted.Participants were on average 7-month post diagnosis and while few had difficulties recalling their experiences, it is possible that events post-diagnosis influenced their recall of events.Additionally, this research was undertaken in one Australian state during a pandemic, and participants were recruited through a survey study for which respondents are typically more educated and healthier than non-respondents. 32ese features may limit the transferability of findings.

| Clinical implications
People with young-onset CRC continue to be an under-researched population in Australia and internationally.Our study highlights several areas where practice change and further training may be recommended.Supporting patients' active role in decision-making through communicating an appropriate level of urgency and acknowledging stage-of-life challenges for younger people may lead to more timely diagnosis.Others have also identified patient selfadvocacy as a key aspect of quality care that could reduce time to diagnosis for younger adults with CRC. 13 Our study points to how this may be achieved.Greater support from and for GPs is needed to ensure that younger adults act on referrals in a timely way.This could include communication skills training, automating reminders through primary care medical record systems, and/or organising test appointments in conjunction with patients.Clinical practice guidelines specific to younger adults with CRC are needed to better support their care.The diagnostic period is critical to optimal outcomes for patients and must feature in these guidelines.While a recent international consensus group have published guidance specific to younger adults with CRC, there is limited detail on investigations for symptoms, particularly non-alarm or combinations of symptoms. 33While Australian guidelines provide age-based referral guidance for colonoscopy in symptomatic patients, it is unclear whether the increasing incidence of disease in younger people has been taken into account. 34Findings from risk stratifying studies will help GPs identify younger adults most at risk of CRC.
However until these are available, our findings indicate the potential for strategies that support active decision-making in younger adults to facilitate a timely diagnosis.

| CONCLUSIONS
Whereas previous literature has identified unique challenges associated with young-onset CRC diagnosis, our study explores the impact of these challenges on younger Australians' decision-making during the diagnostic process.Decision-making evolves depending on the urgency perceived by younger adults and their health care team.People with young-onset CRC make decisions in the context of unique considerations, which were further complicated by the COVID-19 pandemic.As younger people perceive urgency to act, they take on a more active role in decision-making, utilising personal resources to make decisions for more timely access to care.With increasing incidence of CRC in younger adults, further research examining their experiences of the diagnostic process and how the healthcare system can provide greater support is warranted.
Our all-female research team consisted of two fourth-year psychology students (Authors AA and JH) and two project supervisors with PhDs (Authors RJB and VW).Authors RJB and VW have 10 and 25 years of cancer research experience respectively, including qualitative and quantitative research methods.Supervisors provided Authors AA and JH with training and guidance in qualitative methods.As the primary author leading analysis, Author AA reflected on their personal experience of thyroid cancer diagnosed during the COVID-19 pandemic.This provided challenges and benefits, considering ways that assumptions and emotional responses may influence understanding of the data as well as facilitating deep reflection about individual perspectives and experiences.
Many participants discussed prolonging time to test appointments due to a perceived lack of urgency.Participants discussed their age in conjunction with a belief that results of testing would be inconsequential, thus not requiring immediate action.Many felt no sense of urgency from their GP, reinforcing their lack of worry."The first GP kind of, not brushed it off, but […] It was like 'You're too young to have this kind of diagnosis'" (Y11).Several participants expressed regret associated with their initial lack of urgency to follow through on testing.When describing decisions about when and where to access diagnostic tests, many cited convenience and proximity as top priorities.The sharp turn in participants' perceived urgency was most often described in relation to receiving a probable diagnosis of CRC, with further tests needed to confirm this diagnosis.

F I G U R E 1
Relationships between themes.Experiences of decision-making were influenced by increasing urgency, nuanced involvement, and use of resources.Decisions were made in context of stage-of-life considerations, with the COVID-19 pandemic a temporary contextual factor influencing those decisions.

Table 3
, Supplementary TableS2).Many described how their decisions were complicated by stage-of-life Participants reflected that their young age was frequently commented on by healthcare providers.The impact of age on diagnostic experiences was particularly evident in the descriptions of the youngest participants."Hearing that you're young all the time… I know I'm young.Literally every single person has said it.And I think having the reminder doesn't help."(Y11).
Participant quotes supporting key themes-contextual factors influencing decision-making.gotacall about [the colonoscopy] when my daughter was about four or 5 months old.Great time, because I was breastfeeding.So I asked if we could push it back a little bit".Y15"You're young, you're fit, you're healthy.You're not thinking the worst and your doctor isn't thinking that either." our findings suggest the T A B L E 3