Prioritisation Survey Results
What are the priorities for the new Early Diagnosis and Management of Early-Onset Colorectal Cancer guidelines?
We recently invited people with lived experience of early-onset bowel cancer, health care professionals, researchers and policy makers to complete an online prioritisation survey.
The survey aimed to identify the highest priority topics that we should address in the new guidelines to best support clinicians providing care to people with early-onset bowel cancer.
We heard from 141 people with lived experience and 131 health care professionals, researchers and policy makers.
The results show a clear focus on issues occurring at the beginning of care and the need to improve early detection through awareness of symptoms and timely access to diagnosis and treatment.
The need for psychosocial support was also emphasised including supporting mental health, addressing financial and family impacts and ensuring continuity of care and support.
Priority One
Early detection and diagnosis was the dominant priority across both respondent groups and included two interrelated priorities. First, the need to improve early detection and diagnosis of EOCRC through increased awareness and education among both healthcare providers and the general population, alongside increased screening. Second, the need to strengthen system navigation and performance through clear, consistent and efficient diagnostic and referral pathways, with a focus on reducing wait times between positive screening, or red flag symptoms, and colonoscopy.
“Most important is the diagnosis. Being able to identify those most at risk with a non-invasive test, and streamlining access to colonoscopic investigation for the highest risk. This isn’t about lowering screening ages – this is making recommendations based on aggregate data that identifies signs and symptoms and identifying those individuals at higher risk that should be offered colonoscopy.”
Some of these areas are already addressed in other national guidelines, so we will focus on the areas where changed recommendations will make the most impact.
Priority Two
The need for improved mental health screening and ongoing comprehensive psychosocial support was consistently emphasised across both groups. Mental health concerns are a substantial and persistent burden on people under 50 with lived experience of bowel cancer.
It was clear that guidance and support should consider financial and employment impacts, family support and broader psychosocial challenges. Respondents emphasised that integrated support systems are needed throughout the whole care continuum, before, during and after treatment and extending into survivorship.
“You just don’t ever expect it to be you or the one you love… It’s not like what we can see in the movies – it is real life and it changes everything. When it’s happening quickly, more support in all those [psychosocial] areas is needed, and needs to be more easily accessible to put less pressure on the patient with bowel cancer and their families.”
Priority Three
The importance of coordinated, high-quality clinical care providing optimal therapy for early-onset bowel cancer was also identified as a high priority. Key components included clear, consistent, standardised care/treatment pathways and approaches, the integration of precision medicine and molecular testing, strong multidisciplinary team coordination, equitable access to care and involving the patient in all decisions.
Where to next?
The Australian Living Evidence Collaboration (ALEC) is partnering with Bowel Cancer Australia to develop new guidelines for the early diagnosis and management of bowel cancer in people under 50, with a focus on where there are differences compared with care and management of those with bowel cancer in people over 50.
The results of the prioritisation survey have provided us with clear direction about the most important issues and concerns of those with lived experience and healthcare professionals. From here, our team of experts will review the latest research from around the world with a focus on unique aspects of the above priorities as related to early-onset bowel cancer. Panels of health professionals, researchers, and people with lived experience will meet regularly to draft recommendations based on this research evidence.
Thank you to everyone who completed the prioritisation survey and has helped shape the future of care for those with early-onset bowel cancer.