‘I knew I had to drive my own bus’: perspectives of patients and healthcare professionals on improving information provision to rare cancer survivors

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. The aims of this study were to explore the following: (1) rare cancer patients’ preferences for information content and delivery mode and (2) the experiences of healthcare professionals in delivering information to this patient group. Methods Interviews with rare cancer survivors and healthcare professionals were conducted between October 2023 and June 2024. Semi-structured interview guides were developed for both survivors and professionals. Interviews were recorded, transcribed verbatim and analysed using thematic analysis. Results A total of 32 interviews (20 survivors and 12 healthcare professionals) were undertaken. Four themes were generated: (1) ‘Questions need to be addressed regardless of information availability’, (2) ‘Information seeking is a fundamental part of the rare cancer experience’ , (3) ‘Healthcare professionals are responsible for information sharing’ and (4) ‘Tailoring information to patient preferences is a balancing act’. Conclusion This study highlights the importance of providing tailored, relevant information to rare cancer survivors in a face-to-face format, despite there being a paucity of information available on many rare cancers. Survivors highlighted the importance of their role in sourcing information and advocating for themselves, whereas health professionals identified their responsibility for providing tailored information to their patients. Implications for Cancer Survivors The findings suggest a need to improve how information is structured and delivered to rare cancer survivors to ensure their unique needs and questions are adequately addressed.