Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Perspectives of patients and healthcare professionals on improving information provision to rare cancer patients (125763)

Tamsin Farrugia 1 2 , Saskia Duijts 1 3 4 5 , Christine Cockburn 2 , Laura Hemming 1 , Carlene Wilson 6 , Evelien Spelten 1 3
  1. Violet Vines Marshman Centre for Rural Health Research, Rural Health School, La Trobe University, Bendigo, VIC, Australia
  2. Rare Cancers Australia, Bowral, NSW, 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 Center, 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

Objective/Purpose: People diagnosed with a rare cancer report a high need for information. Research on rare cancer survivors’ preferences for, and challenges in accessing information is scarce. This study aimed to explore: (1) rare cancer patients’ preferences for information content and delivery, and (2) the experiences of healthcare professionals in delivering information to rare cancer patients.

Sample and setting: Participants were recruited through Rare Cancers Australia’s database. Recruitment of participants ceased when no new themes or patterns were identified.

Procedures: Semi-structured interview guides were developed for patients and professionals. Interviews were recorded, transcribed verbatim and analysed using thematic analysis. A total of 32 interviews (20 patients and 12 healthcare professionals) were undertaken.

Results: Interviews were conducted between October 2023 and June 2024. Four themes emerged: (1) ‘Questions need to be addressed regardless of information availability’. Limited information and awareness of rare cancers creates an information-poor environment, although patient information needs still need to be addressed, (2) ‘Information seeking is a fundamental part of the rare cancer experience’. Patients emphasised the importance of their own endeavours in finding information about their diagnosis, (3) ‘Healthcare professionals are responsible for information sharing’. Clinicians are a primary source of information. Trust and transparency are important for satisfying information needs, and (4) ‘Tailoring information to patient preferences is a balancing act’. Balancing desired information with necessary information is a consideration for healthcare professionals.

Conclusion and clinical implications: Rare cancer patients require tailored, evidence-based information from their primary healthcare provider. However, there is a paucity of information available on many rare cancers. Patients highlighted the importance of their role in sourcing information and advocating for themselves, while professionals identified their responsibility for providing tailored information to their patients.