Younger people with bowel cancer in Aotearoa are waiting months for a diagnosis, are frequently misdiagnosed, and often receive little information and support, according to the largest nationwide study of its kind published in today’s New Zealand Medical Journal.
Researchers from the University of Otago Faculty of Medicine – Christchurch Ōtautahi, working with Bowel Cancer New Zealand, surveyed 353 people diagnosed with colorectal cancer before the age of 50, uncovering significant gaps in diagnosis, treatment, support and a lack of information tailored to their needs.
Dr Rachel Purcell
Lead researcher Dr Rachel Purcell, from the Department of Surgery and Critical Care, says the findings provide an important snapshot of what younger New Zealanders are experiencing as rates of early-onset colorectal cancer continue to rise internationally.
"Historically, bowel cancer has been considered a disease affecting older adults, but that picture is rapidly changing,” she says.
“We are seeing increasing numbers of younger people diagnosed, and their experiences make clear that our health system needs to urgently adapt."
Half the study respondents reported waiting six months or longer from first noticing symptoms to receiving a definitive diagnosis, while one in five waited more than a year.
Many described needing multiple visits to healthcare providers before being referred for further investigation, with almost one-quarter experiencing four or more visits before receiving a specialist referral. Nearly one-third said their symptoms were initially attributed to other conditions, including irritable bowel syndrome, dietary intolerances or other gastrointestinal disorders.
Early diagnosis best opportunity for improved outcomes
Dr Purcell says these findings reinforce the need for all New Zealanders to take bowel symptoms seriously, regardless of age.
"Persistent rectal bleeding, ongoing changes in bowel habits, unexplained abdominal pain or other concerning symptoms should always be investigated appropriately. Age alone should never provide reassurance that bowel cancer is unlikely," she explains.
The study shows the consequences of delayed diagnosis are clearly reflected in the stage of disease. Of respondents who knew their bowel cancer stage, almost two-thirds were diagnosed with the more advanced stages 3 or 4.
"Earlier diagnosis gives people the best opportunity for more effective treatment and improved outcomes. While many patients were investigated promptly once referred, our findings suggest that delays before specialist referral remain an important issue for some younger patients."
The study also found many younger adults are turning to private healthcare to speed up specialist appointment access and diagnostic tests. More than half reported using private health insurance, while others paid out of their own pocket. However, lengthy diagnostic delays were reported by both insured and uninsured respondents.
Support often not tailored for younger patients
The survey also identified significant shortcomings in the support offered to younger patients, with only 13 per cent receiving information specifically designed for younger adults with bowel cancer, despite many facing challenges uncommon among older patients, including raising young families, maintaining employment, and concerns about fertility.
"They are thinking about careers, children, fertility, finances, intimate relationships and returning to work, yet much of the information and many support services remain geared towards older patients,” Dr Purcell explains.
Less than one-third of respondents received fertility counselling before or during treatment, while only a similar proportion recalled receiving advice about the possible impact of treatment on sexual function.
Meanwhile, only a small proportion of respondents reported being offered referral to cultural support services during their cancer journey, including relatively few Māori and Pacific participants.
"Culturally appropriate support plays a vital role in high-quality cancer care. While our study was descriptive, it suggests there is room to improve how these services are consistently offered."
Financial stress can be greater on younger patients
The study also exposes the significant financial impact on younger patients.
Almost 60 per cent of respondents took extended leave from work or study after their diagnosis, while almost half experienced financial hardship from treatment costs, lost income or additional family expenses.
Dr Purcell says supportive care must be an integral part of cancer treatment.
"Improving survival is obviously critical, but survivorship also matters,” she says.
“Younger people may live for decades after treatment, so ensuring they receive appropriate information, psychological support and rehabilitation is equally important."
The researchers believe the study “gives patients a voice”, providing valuable evidence to help improve care pathways for younger people diagnosed with bowel cancer in Aotearoa New Zealand.
"We want younger people to know that bowel cancer can occur before the age of 50, and that persistent symptoms deserve attention. At the same time, we hope these findings contribute to improvements in earlier diagnosis, more age-appropriate support and ultimately better outcomes for patients.” Dr Purcell says.
Publication details:
Patient-reported experiences of early-onset colorectal cancer in Aotearoa New Zealand
Victoria Thompson, Oliver Waddell, Tamara Glyn, Christopher GCA Jackson, Frank Frizelle, Rachel V Purcell, Bowel Cancer New Zealand.
New Zealand Medical Journal
https://nzmj.org.nz/journal/vol-139-no-1637/patient-reported-experiences-of-early-onset-colorectal-cancer-in-aotearoa-new-zealand