The psychosocial impact of the Australian Rare Cancer Portal on patients with rare cancer

ABSTRACT

Background: Patients with a rare cancer (RC) diagnosis face unique challenges affecting psychological wellbeing. Vast geographical distances further compound challenges in accessing RC sub-specialist expertise, clinical trials, research and non-reimbursed therapies. The Australian Rare Cancer (ARC) Portal is a novel model of care delivery that has a positive psychological impact on these patients. Methods: The ARC Portal is a national free online referral platform implemented to overcome barriers to accessing excellent care. It is funded by Omico, with support from BioGrid Australia, Rare Cancers Australia (RCA), and The WEHI Stafford Fox Rare Cancer Program (SFRCP). We have recorded 924 referrals for a diverse range of RC in early (30%) and late stages (70%). Our 162 referring clinicians derive from every Australian state and from both regional and metropolitan centres. Over 50 content experts from Australia and internationally have provided case advice. Referring clinical impact surveys and patient feedback surveys were analysed to identify psychosocial impacts of the ARC Portal. Results: Our model of care keeps patients with their primary oncologists by equipping referrers with increased expertise drawing from, on average, two to five experts. The entirely online consent process overcomes geographical barriers to enrolment, and is of particular importance in the context of the ongoing COVID-19 restrictions removing in person interaction. Provision of expertise and treatment recommendations meets informational needs and increased the patient confidence patients in their treating clinicians. Report recommendations directly altered the treatment delivered to patients in 20/ 48 of surveyed referrer respondents. Early stage patients are eligible for referral to guide neoadjuvant and adjuvant therapy, and those in remission for anticipatory identification of next lines of therapy. We identify appropriate access to investigator-driven research efforts to overcome financial barriers to genomic sequencing e.g. via the MoST Program funded by OMICO and the WEHI-SFRCP enabling access to molecularly-guided therapy. A lack of reimbursed therapeutic options in RC poses financial stress on patients. The ARC Portal expands patients' treatment options via links with clinical trial networks, coordination with industry, and cross-referral to the charity, RCA, for fundraising assistance. We provide patients with the opportunity for involvement in research, which for many provides hope, either for themselves, or for others, as they can opt to provide access to biomarker and tumour specimens via the WEHI-SFRCP;the majority of patients (82.5%) have provided consent. Conclusions: The ARC Portal offers patients access to excellent rare cancer care resulting in positive impacts upon patients' psychological wellbeing. These initial observations require more formal assessment.