Patient-reported experiences of early-onset colorectal cancer in Aotearoa New Zealand

The incidence of early-onset colorectal cancer (EOCRC), diagnosed before the age of 50 years, has increased steadily in many high-income countries over the past two decades, even as incidence stabilises or declines in older age groups; nearly one in 10 cases of colorectal cancer (CRC) worldwide now occur in people under 50 years.¹ These trends underscore the need for timely recognition of red-flag bowel symptoms and prompt diagnostic referral for people of all ages, while ensuring that younger adults are not overlooked because of their age.

In Aotearoa New Zealand, national and regional analyses show rising rates in younger adults.^2–4 While New Zealand’s National Bowel Screening Programme has historically included people aged 60–74 years, the government has announced a staged lowering of eligibility to 58 years from late 2025;⁵ however, most EOCRC cases remain outside screening age. These trends underscore the need for early symptom recognition and expedited diagnostic referral in younger adults.

Patient-reported evidence consistently highlights diagnostic delay and misattribution of symptoms in EOCRC.⁶ Large advocacy-led surveys describe frequent initial misdiagnoses (e.g., haemorrhoids, irritable bowel syndrome [IBS]), multiple healthcare visits before referral and substantial psychosocial impact on younger adults and their families.^7,8 Younger adults also report age-specific needs and difficulties that extend beyond tumour treatment, including fertility preservation and counselling,^9–12 sexual function,¹³ body image, return-to-work/education,¹⁴ childcare and financial strain.¹⁵ Emerging EOCRC literature underscores gaps in survivorship resources tailored to this life stage.¹⁶

Despite growing international attention, New Zealand patient perspectives remain under-described outside small regional cohorts, and system-level context (public vs private access, cultural support and information tailored to younger patients) is rarely captured systematically.¹⁷ This study reports nationwide, patient-reported experiences of EOCRC in New Zealand, focussing on diagnostic intervals and referral, stage at presentation, treatment-related information and access (including private healthcare) and supportive-care domains such as fertility, sexual health, age-specific information and cultural support, recognising that these findings are descriptive and based on self-reporting.

Methods

Study design and setting

We conducted a cross-sectional, anonymous online survey of people diagnosed with CRC under 50 years of age, co-ordinated by Bowel Cancer New Zealand (BCNZ) in collaboration with the Department of Surgery and Critical Care, University of Otago, Christchurch. The Participant Information Sheet outlined the study purpose, eligibility, risks and contact details, and confirmed anonymity and data security. Ethical approval was granted (H24/00177) by the University of Otago Human Ethics Committee (Health). All participants gave informed consent.

Participants and recruitment

Eligible participants were patients or survivors diagnosed with CRC at <50 years. Recruitment occurred nationally via BCNZ channels (website, newsletters, social media, Facebook support group) and patient networks. Promotional materials invited younger adults with CRC to complete a 10- to 20-minute anonymous survey; the invitation noted ethical approval and included a draw for a grocery voucher, with contact details captured separately from survey responses to preserve anonymity. Recruitment ran from August 2024 through to 31 January 2025; eligible respondents could have been diagnosed in any year prior to survey completion, so experiences may span periods with differing levels of access to cancer nurse specialists and other support services.

Survey measures

The survey was co-developed by BCNZ and academic collaborators and covered nine domains: demographics; symptoms and awareness; diagnostic intervals and referral pathway (including number of healthcare visits and declined referrals); colonoscopy timing; private healthcare access and payment; cultural support; diagnosis and stage; treatment information (e.g., biomarkers, unfunded medicines); sexual health; stoma/body image; fertility; family history and genetic services; and financial and psychosocial impact. Response formats included single-choice, multiple-choice, Likert-type items and free-text. Survey items and response options are detailed in the survey (Appendix).

The survey asked whether participants were given information tailored to younger people (diagnostic/treatment/recovery), whether they were offered referral to cultural support services (e.g., Māori or Pacific support services) and whether they had private health insurance or used private specialists/tests and how these were funded. It also captured family history of CRC and referral to genetic services during treatment or follow-up.

Data analysis

Survey responses were collected without personal identifiers. For analysis, we included all submitted responses meeting eligibility, yielding n=353. We conducted descriptive analyses reporting counts (n) and percentages (%). For time-interval variables, categories followed the survey options (e.g., <1 month, 1–2 months, 3–4 months, 5–6 months, 6–12 months, >12 months); for some summaries we aggregated categories (e.g., ≥6 months).

Multi-select items were parsed so that each selected option contributed one count (“total-response” approach), and we pre-specified denominators for each analysis as follows: For single-choice items, the denominator was given as the number of non-missing responses to that item. Where appropriate, we also gave the percentage out of the full sample (n=353). Multi-select items (e.g., symptoms) were reported as counts and percentages of the full sample; totals may exceed 100%. “Not applicable”, “Don’t know” and “Can’t remember” were treated as separate categories descriptively and excluded from sub-group denominators where noted (e.g., time-to-diagnosis among those providing a timeframe).

Ethnicity was re-analysed using two New Zealand–standard approaches: 1) prioritised ethnicity (Ministry of Health – Manatū Hauora order: Māori > Pacific > Asian > Middle Eastern, Latin American and African [MELAA] > Other > European) assigning each respondent to one group; and 2) total-response ethnicity, allowing multi-ethnic identification. Free-text “ethnicity specifics” entries were harmonised and mapped to these categories.

Diagnostic intervals were analysed as: a) symptom onset to diagnosis; b) first healthcare visit to colonoscopy/computed tomography colonography (CT colonography)/sigmoidoscopy; c) number of visits prior to referral, and d) declined colonoscopy referrals. Stage was summarised overall and by early (I–II) vs advanced (III–IV) disease. Misdiagnosis categories (e.g., IBS, dietary intolerance) were reported as provided; “Other” free-text entries were grouped descriptively.

Results

Patient demographics

A total of 353 respondents under the age of 50 years completed the survey. The mean age at diagnosis was 41.4 years (median 42; range 22–49 years). When grouped by decade, the majority of people were diagnosed between 40 and 49 years (238/353, 67.4%), followed by 30–39 years (106/353, 30.0%), with only nine respondents (2.6%) diagnosed before the age of 30 years.

The survey cohort was predominantly female (249/353; 70.5%), with 103 males (29.2%) and one participant who preferred not to state gender. The majority self-identified as Pākehā/European (314/353; 89%), with smaller proportions identifying as Māori (21/353; 5.9%), Pacific (7/353; 2.0%) or Asian (5/353; 1.4%). Respondents were widely distributed across New Zealand, with the largest groups from Auckland (25.5%) and Canterbury (24.4%), followed by Wellington (9.9%) and Waikato (8.5%) (Table 1).

View Table 1, Figure 1–4.

Symptoms and presentation

The most common symptoms prompting medical consultation were rectal bleeding in almost half of respondents (175/353; 49.6%), abdominal pain (136/353; 38.5%), change in bowel habits (129/353; 36.5%) and fatigue (127/353; 36.0%). Other reported symptoms included sensation of incomplete evacuation (79/353, 22.4%), unintentional weight loss (47/353; 13.3%) and a palpable abdominal mass (19/353; 5.4%). One-quarter (94/353; 26.6%) reported “other”, often non-specific, gastrointestinal symptoms.

Time to diagnosis and referral pathways

Delays between symptom onset and diagnosis were frequently reported. Among those who provided a timeframe (n=327), 165 (50.5%) experienced delays of ≥6 months, with 71 (21.7%) waiting more than 12 months to receive a diagnosis of CRC. From first healthcare consultation to diagnostic investigation (colonoscopy, CT colonography or sigmoidoscopy), over half (199/337; 59.1%) were investigated within 2 months. However, 49 (14.5%) waited longer than 12 months.

Most respondents reported multiple healthcare visits before referral. While one to two visits were reported by the majority, 77/353 (21.8%) required four or more visits before referral (Figure 1A). Additionally, 25/353 (7.1%) reported that their colonoscopy referral was initially declined, most commonly within the public health system.

Misdiagnosis was frequent, with 112/353 (31.7%) initially given an alternative explanation for their symptoms (Figure 1B). The most common suggestions were IBS (>30 cases), dietary intolerances (nine or more), diverticular disease (six), ulcerative colitis (six) and, less commonly, coeliac disease or other gastrointestinal disorders. A large subset (64/112; 57.1%) were grouped under “other” diagnoses, typically vague gastrointestinal or stress-related explanations. There was no difference in proportions of males and females being misdiagnosed (males, 31%; females, 32%).

Delays in accessing colonoscopy or specialist referral often led patients to pursue private healthcare. Nearly half of respondents reported seeing a specialist privately (155/353; 43.9%) or undergoing private investigations (145/353; 41.1%), most commonly gastroenterology or surgical consultations. Access was frequently facilitated by private health insurance (189/353; 53.5%), although a minority paid out-of-pocket. Long diagnostic delays were reported across both insured and uninsured respondents. While there was a trend toward a higher proportion of those without private health insurance experiencing delays greater than 12 months (26.2 vs 18.2% with insurance), delays were common in both groups.

Treatment-related findings

Of the 210 respondents who recalled their stage at diagnosis, 93 (44.9%) were diagnosed at Stage III and 44 (21.3%) at Stage IV, meaning that 137/207 (66.2%) presented with advanced disease (Stage III–IV). Only one-third of people (70/207; 33.8%) were diagnosed at an early stage (I–II) (Figure 1C).

Over one-third of respondents (135/353; 38.2%) reported a family history of CRC. Among these, 85 (63.0%) were referred to genetic services, while more than one-quarter (39; 28.9%) were not referred despite their family history. Overall, fewer than half of all respondents (172/353; 48.7%) reported being referred to genetic services during treatment or follow-up. Only a small minority of respondents (27/353; 7.6%) were offered referral to cultural support services during their treatment. Among Māori and Pacific respondents (n=10), just two people (20%) were offered such support, while the majority (6/10; 60%) reported that they were not.

Impact on work and finances

The majority of participants reported significant disruption to work or study, with 209/353 (59.2%) taking a full-time leave of absence and a further 61/353 (17.3%) reducing their workload. Almost half (169/353; 47.9%) experienced financial difficulties directly attributable to their diagnosis, citing loss of income, out-of-pocket costs for treatment, and additional household or childcare expenses.

Fertility, stoma and body image, and sexual health

Fertility discussions were limited. Only 103/353 (29.2%) received fertility advice before or during treatment, and just 21/353 (5.9%) saw a fertility specialist. A total of 50/353 (14.2%) reported treatment-related infertility, with a further 61/353 (17.3%) unsure of their fertility status post-treatment. A permanent stoma was uncommon (27 of 353; 7.6%), although a stoma was required as part of treatment for 120/353 (34.0%) respondents. Most with a stoma reported negative effects on body image (88/120; 73.3%) and intimate relationships (101/120; 84.2%). Only 110/353 (31.2%) recalled being counselled about potential sexual side effects of treatment, despite nearly a quarter of respondents (22.7%) reporting ongoing issues with sexual function.

Support services

Few respondents reported being given information tailored specifically to younger adults. Only 45/353 (12.8%) recalled receiving diagnostic, treatment or recovery information relevant to their age group. The majority (67.1%) reported receiving no such information, while a further 20% could not recall. This highlights a gap in age-appropriate support and resources for younger patients. Overall, only 7.6% of people reported being offered referral to a cultural support service. Among those identifying as Māori or Pacific (n=28), nine (32.1%) were offered cultural support and 14 (50.0%) were not; the remainder could not recall.

Discussion

This nationwide survey undertaken by BCNZ provides new insights into the experiences of people with EOCRC in New Zealand. The results highlight significant diagnostic delays, high rates of patient-reported initial alternative explanations for symptoms, frequent advanced-stage presentation and substantial impacts on work and finances.

While half of respondents reported waiting 6 months or longer from first symptoms to diagnosis, we also found that 59% were investigated within 2 months of their first healthcare consultation, indicating that timely investigation does occur for many younger patients. Respondents described prolonged intervals from first symptoms to diagnosis and multiple healthcare visits before referral, and many perceived barriers to timely referral for diagnostic colonoscopy. Almost one-third reported that an alternative explanation for their symptoms was initially given, most commonly functional gastrointestinal disorders, based on their recollection. These patient-reported initial explanations cannot be directly verified against clinical records and may not reflect the clinician’s full differential diagnosis. No difference in initial misdiagnosis was reported between males and females, suggesting that there was no gender bias in the attribution of bowel symptoms to benign or stress-related conditions, in contrast to other international studies.^6,18

Consistent with these delays,¹⁹ two-thirds of respondents reported being diagnosed with advanced disease (Stage III–IV). This proportion appears higher than reported in the general New Zealand CRC population, where older patients benefit from screening programmes and may be more likely to be diagnosed at earlier stages;^20,21 however, our study did not include a comparator cohort, and we cannot quantify differences between age groups. International studies of EOCRC similarly report high rates of late-stage presentation, often with metastatic disease.^15,22,23 Our findings therefore align with global data, reinforcing concern that younger adults are at particular risk of delayed diagnosis and poor outcomes.

Another important gap identified was the lack of age-specific information provided to patients. Fewer than 13% of respondents reported being given diagnostic, treatment or recovery information tailored to younger adults, and two-thirds received no such guidance. This aligns with other findings from the survey, including limited fertility counselling, inadequate discussion of sexual side effects, and the profound work and financial disruptions reported. In addition, nearly 60% of respondents required full-time leave from work or study, and almost half experienced financial hardship. Challenges related to income, work and sexual function are important for patients of all ages but may have particular implications for younger adults who are often working, studying or raising families at the time of diagnosis. Together, these results emphasise that younger patients face unique challenges at the time of diagnosis and throughout survivorship, yet current information and support systems remain largely designed for older populations.^12,14,20 Addressing this gap is essential to ensure that care pathways, patient resources and survivorship programmes are relevant to the needs of younger adults with CRC.

A large proportion of respondents reported using private care, and almost half had privately funded tests, most often facilitated by pre-existing health insurance. Delays were reported in both insured and uninsured groups, and in our descriptive analysis a higher proportion of those without insurance reported delays greater than 12 months. These findings describe patterns of private and public healthcare use among respondents but cannot determine whether private-sector access altered diagnostic timelines or contributed to inequities.²¹

Fertility counselling was uncommon, and very few patients saw a fertility specialist before treatment. Among those who required a stoma, the majority reported adverse effects on body image and relationships. Similarly, only a minority received counselling about potential sexual side effects, despite almost a quarter reporting persistent dysfunction. These findings demonstrate that the supportive care needs of younger patients are not being adequately addressed, as has been reported globally.^22,23 Cultural needs also appear to be insufficiently addressed. Fewer than 8% of all respondents were offered referral to cultural support services, and only one-third of Māori and Pacific participants reported being offered such support. Culturally responsive care is vital for patients of all ages, and given persistent inequities in cancer outcomes for Māori and Pacific peoples in New Zealand,^25,28 these findings suggest that younger respondents did not always experience access to such support.

Family history of CRC was common in this cohort, with 38% reporting an affected relative. Despite this, only 63% of those with a family history reported being referred to genetic services, and overall fewer than half of all respondents recalled such a referral. Given the importance of hereditary CRC syndromes, such as Lynch syndrome, and the value of cascade testing in reducing familial risk,²⁹ these self-reported data raise questions about how genetic assessment is experienced by younger patients. However, the survey did not capture sufficient family history or clinical information to assess whether referrals were indicated or whether care aligned with New Zealand guidelines.²⁴ These findings highlight variability in respondents’ recollection of referral to genetic services and suggest an area that may warrant further investigation using linked clinical data.

The findings of this survey reinforce previous reports that younger adults with EOCRC commonly experience prolonged diagnostic pathways and substantial psychosocial and supportive-care impacts. Respondents also described gaps in age-specific information, fertility counselling, sexual health discussions and cultural support.

Strengths and limitations

The main strength of this study is that it represents the largest survey to date of EOCRC patients in Aotearoa New Zealand, capturing patient-reported experiences across the diagnostic, treatment and survivorship continuum. The nationwide scope, inclusion of Māori and Pacific respondents and focus on issues unique to younger adults add further value. However, participation was voluntary and recruited largely through patient networks, introducing potential selection bias towards more engaged or resourced patients; a gender skew was noted in respondents. Recall bias is possible, particularly for stage, diagnostic timelines and treatment details, as respondents were reporting retrospectively, and ethnic minority groups remain under-represented relative to their disease burden. The survey instrument was developed collaboratively with BCNZ but was not formally validated, and we did not integrate clinical data, so we could not verify diagnoses, staging, biomarker testing or treatments against medical records. Because recruitment occurred through voluntary participation and advocacy-group networks, the findings may not fully represent the broader EOCRC population in New Zealand. Future studies combining patient-reported outcomes with validated CRC-specific quality-of-life instruments (e.g., EORTC QLQ-C30 or QLQ-CR29) and linked clinical data would strengthen conclusions. Reported experiences also span multiple calendar years of diagnosis, during which models of care, including the availability of cancer nurse specialists, may have evolved. In addition, our survey did not include a comparator group of older patients, so findings cannot be used to infer differences between younger and older adults with CRC.

View Appendix.