Purpose: The primary aim of this qualitative study was to explore how sarcoma survivors experienced communication with and support from healthcare professional during their outpatient long-term follow-up care at a university hospital.
Methods: The study employed an exploratory qualitative design, using a phenomenological and hermeneutic approach. Data were collected through semi-structured interviews with 28 sarcoma patients treated at a dedicated sarcoma centre. The material was analysed using thematic analysis.
Results: Participants reported a high degree of trust in healthcare professionals and overall satisfaction with their oncological care. However, many expressed that physicians could improve their ability to take a more holistic view and to acknowledge how cancer and its treatment had affected patients' health and quality of life. All participants appreciated receiving a structured checklist that helped them identify and communicate challenges and unmet needs. Furthermore, they expressed a need for more comprehensive and continuous information about potential side effects and late complications throughout the treatment and follow-up trajectory.
Conclusion: This study highlights that sarcoma survivors value clear, consistent, and holistic communication about late effects during follow-up care. To strengthen patient-centred communication, healthcare professionals should engage in open dialogue and clarify shared responsibilities related to long-term health management and rehabilitation.
Keywords: Sarcoma; information needs; patient-centred cancer care; psychosocial issues; qualitative research; rare cancers; unmet needs.