Early onset gastrointestinal cancers - a needs analysis

Early onset cancer is defined as cancer in patients < 50 years of age. The global incidence of Early Onset (EO) is increasing for unknown reasons. EO Gastrointestinal (GI) cancers, which account for approximately 27% of newly diagnosed cancer cases and 37% of cancer deaths, present distinct challenges in areas including sexual health, finance, career and family. We aimed to assess the holistic needs of these patients attending St James's Hospital Dublin, a national upper GI referral centre and Ireland's first OECI Comprehensive Cancer Centre, through a mixed methods approach.

The primary aim of the needs analysis study was to elicit experiences of patients with EO GI malignancies diagnosed between 2014-2024 attending a single institution. Methods included an anonymous survey and Focus Group Discussions (FGD). 236 surveys were sent to patient's homes. The survey encompassed 21 domains addressing experiences with guidance and support pertaining to sexual health and function, psychosocial and financial challenges, as well as implications of diagnosis for career trajectory and reintegration into the workforce. Patients were also questioned re preferred timing of referral for speciality services. FGDs used nominal group technique to deepen the analysis.

102 participants responded via survey and 10 participated in an FGD. The mean age at diagnosis was 43 years. 84% of participants reported they would have benefitted from a conversation about fertility, sexual health/function (81%) and financial supports (81%) at diagnosis. 93% of patients were out of work during cancer treatment with average length of time >1 year. 65% were diagnosed late at stages 3 and 4. On average it took 3-6 months before a diagnosis was made and took 2 visits to their GP before speciality referral. 82% did not receive a dedicated referral for care giver supports, with 18% independently engaged in care giver support services.

This needs analysis highlights the importance of specialised clinical pathways, for early onset GI cancer patients focusing on these unique and complex needs. Financial supports, conversations regarding sexual health/function, fertility preservation and psychosocial support are critical areas requiring structured intervention.