Supporting People with A Rare Cancer (SPARC)

Patients with a rare cancer have a more difficult, lonely, illness trajectory and worse medical and psychosocial outcomes. Patients have substantial unmet supportive care needs, where evidence indicates that the most prevalent unmet needs for rare cancer patients are reported in the information domain. In addition, patients who live in rural and remote areas have an even more difficult illness trajectory. Currently, there is no tailored supportive care for this group of patients.

The SPARC (Supporting People with A Rare Cancer) project aims to investigate, in co-design:

1. the unmet needs of people with a rare cancer with a focus on information needs, and
2. the acceptability and feasibility of a peer support intervention targeting these unmet needs for rural people with a rare cancer.

The SPARC study has three main phases and involves close collaboration with people who have been diagnosed with a rare cancer. The first phase, information gathering, will involve conducting systematic reviews and qualitative interviews and focus groups in order to explore complex needs and experiences of people living with a rare cancer. Emphasis will be placed on understanding the information needs and preferences for peer support services of those living with a rare cancer, as well as understanding the challenges faced by those living in rural and remote communities. The second stage, co-design, will employ established co-design methodologies to co-develop two novel interventions targeted at addressing specific needs of those diagnosed with rare cancer. First, a peer support intervention will be co-designed to address psychological morbidities such as loneliness, depression and anxiety for those diagnosed with a rare cancer who live in rural and remote locations. Second, an intervention will be developed which aims to improve unmet information needs of individuals with rare cancer. Finally, pre-post intervention pilots will assess the acceptability, feasibility and preliminary efficacy of each intervention.

The SPARC study is funded by Cancer Council Victoria and Rare Cancers Australia. Beyond funding the project, the team are working in close collaboration with Rare Cancers Australia who are the only patient platform for people with a rare cancer.

Research Team

Professor Evelien Spelten, Dr Laura Hemming, Professor Carlene Wilson (University of Melbourne), Dr Eva Yuen (Deakin University), Dr Saskia Duijts (Netherland Comprehensive Cancer Organisation (IKNL), The Netherlands), Dr Nienke Zomerdijk (University of Melbourne), Christine Cockburn (Rare Cancers Australia), Tamsin Farrugia (PhD student).