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

Abstract

aim: Early-onset colorectal cancer (EOCRC; <50 years) is rising globally, yet the lived experiences of people diagnosed with EOCRC is poorly described. We aimed to carry out a survey to explore patient-reported experiences among people with EOCRC in Aotearoa New Zealand. methods: A nationwide, anonymous online survey (August 2024 to January 2025) of people diagnosed with colorectal cancer (CRC) before age 50 years was undertaken. Descriptive analyses report counts/percentages overall and, where relevant, report respondents to each item; ethnicity was summarised using prioritised and total-response approaches. results: Three hundred and fifty-three people (mean age 41.4 years; 70.5% female) responded to the survey. Half of the people reported ≥6 months from first symptoms to diagnosis and 20% waited more than 12 months for a diagnosis; around 20% of respondents made four or more healthcare visits before referral and 7.1% had a colonoscopy referral initially declined. Initial misdiagnoses were common (112/353; 31.7%) with similar rates between males and females. Among those reporting stage, two-thirds had Stage III–IV. Over half of patients used private care, often via insurance (189/353; 53.5%), yet delays occurred in both insured and uninsured groups. Fertility counselling (29.2%) and sexual side-effect counselling (31.2%) were uncommon, with 23% of respondents reporting persistent sexual dysfunction. Only 12.8% of people received information tailored to younger adults and cultural support was offered to only 7.6% of people. conclusions: Younger New Zealanders with CRC reported prolonged diagnostic intervals, frequent initial alternative explanations for symptoms and late-stage disease. Respondents also reported gaps in age-specific information and supportive care.