THE EXPERIENCE OF ADULT HAEMATOPOIETIC STEM CELL TRANSPLANT (HSCT) SURVIVORS ATTENDING LONG-TERM FOLLOW-UP (LTFU) CLINIC IN SINGAPORE – A DESCRIPTIVE QUALITATIVE STUDY

Abstract

Background: The number of haematological stem cell transplant (HSCT) survivors is expected to increase due to expanding indication for HSCT. HSCT survivors face multiple late complications and psychosocial sequalae which threaten long-term mortality and result in significant morbidity. Long-term follow-up (LTFU) is necessary to manage complications and improve longterm outcome of the survivors. Aim: To understand the experience of HSCT survivors in LTFU care. Design: Descriptive qualitative design was used. Methods: A convenience sample of eight participants were recruited from the LTFU clinic in one public hospital in Singapore. Semi-structured, face-to-face audio-taped interviews were conducted. The verbatim transcriptions of the interviews were subjected to thematic analysis. to identify the themes and subthemes in the data. Results: Analysis yielded three themes: comprehending the experience, acknowledging meaningfulness of the experience and managing threats to the new life. The results highlighted that the duality of survivorship experience; being cured of their primary illness while many struggling with the stark reality of facing life-long complications. However, many HSCT survivors appreciate the new lease of life the cure brought them as they comprehend the meaningfulness of their experience and enabled them to manage the challenges and stressors they faced to maintain their well-being after HSCT. Conclusion: The study highlighted the importance and role of LTFU clinic in survivorship. The role of LTFU should move beyond monitoring for late complications to promoting wellness as challenges faced by survivors are multidimensional. Implications: This calls for a need to establish LTFU as part of the continuum of care for HSCT survivors. Guidelines, education and infrastructure must be put in place to ensure value-based care that is of quality and sustainable for all stakeholders involved.