Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2026

Addressing information and support needs for people diagnosed with rare and less common cancers (147711)

Tamsin Farrugia 1 , Saskia Duijts 2 3 4 5 , Carlene Wilson 6 , Christine Cockburn 7 , Laura Hemming 2 , Evelien Spelten 2
  1. La Trobe University and Rare Cancers Australia, West Wollongong, NSW, Australia
  2. Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Bendigo, VIC, Australia
  3. Department of Research and Development, Netherlands Comprehensive Cancer Organisation (Integraal Kankercentrum Nederland, IKNL), Utrecht, Netherlands
  4. Department of Medical Psychology, Amsterdam University Medical Centres, Amsterdam, Netherlands
  5. Cancer Center Amsterdam, Cancer Treatment and Quality of Life, Amsterdam, Netherlands
  6. Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, VIC, Australia
  7. Rare Cancers Australia, Bowral, NSW, Australia

Aims: Information provision is a fundamental component of supportive cancer care, enabling informed decision-making and helping patients manage uncertainty. People diagnosed with rare and less common cancers (RLCCs) report substantial unmet information needs, yet evidence to guide supportive care for this population is limited. As part of a broader PhD research program, this research aimed to characterise information needs and identify approaches to improve informational support throughout the cancer trajectory.

Methods: Four complementary studies were undertaken: a systematic review of interventions targeting information needs and/or satisfaction with information; semi-structured interviews with 20 rare cancer survivors and 12 healthcare professionals exploring experiences and preferences for information provision; secondary analysis of survivor interviews; and analysis of a national cross-sectional survey of 1,548 people with cancer (1,185 RLCC; 363 common cancer) comparing experiences of accessing information and support.

Results: The systematic review identified 34 intervention studies, but only five focused on rare cancers, with none improving informational outcomes. Across cancer types, promising interventions incorporated face-to-face communication, written information and nurse delivery. Qualitative findings demonstrated persistent information gaps and uncertainty among rare cancer survivors and highlighted the importance of tailored, relevant and honest information from healthcare professionals. Inadequate information and unfamiliarity were prominent contributors to uncertainty, where healthcare providers had substantial influence on survivors’ experiences. National survey findings confirmed significant disparities: compared with common cancer participants, RLCC participants reported poorer information provision at diagnosis, less access to contacts for follow-up questions, greater reliance on advocacy organisations and online information, and greater need for support accessing information.

Conclusions: People with RLCCs experience significant informational disadvantage that contributes to uncertainty and unmet supportive care needs. Supportive care strategies should prioritise tailored, face-to-face information provision, complemented by written resources and accessible healthcare professional support, to reduce uncertainty and better support patients throughout their cancer trajectory.