Quality of life of hematopoietic stem cell transplant survivors in Pakistan

Hematopoietic stem cell transplant (HSCT) is a well-known aggressive therapeutic intervention for both the congenital and the malignant disorders of the hematopoietic system. Though the survival rate of HSCT is well established in Pakistan, yet the effectiveness of this treatment and its impact on the quality of life of survivors in the context of Pakistan, remains unexplored. Objective: The aim of the study was to explore the QOL of HSCT survivors in Pakistan. Methodology: This study employed a qualitative descriptive design to explore the quality of life of I-ISCT survivors. The study setting was the bone marrow transplant outpatient clinics in two of the four centres of Pakistan, which included one private tertiary care hospital and one government tertiary care hospital. Using purposive sampling, a total of 12 participants were recruited for the study. A semi-structured interview guide was used to collect the data. The interviews were voice recorded and were transcribed verbatim. The data was then organized for content analysis, using Creswell\u27s six steps of data analysis. Findings: Content analysis of the data led to three categories, with an overall theme Getting back to normal . Corresponding with the research questions, the three categories elicited were: quality of life of HSCT survivors in Pakistan, challenges faced by survivors, and support system and coping strategies. The findings of the current study revealed that overall, the participants were positive about their QOL after the transplant; they felt grateful at having recovered from the disease. The findings also uncovered the challenges associated with transplant; these included high cost of treatment, uncertainty of the disease and its treatment, and difficulty in finding donors. The after effects of chemotherapy during transplant also remains a challenge affecting the physical and psychosocial domain. Graft versus host disease (GVHD), and long term weakness and fatigue, were also reported as long term challenges faced by HSCT survivors. Although at varying levels, the survivors counted on several sources, including the family, the health care professionals\u27 support, and self-efficacy to cope with these challenging experiences. Conclusion: Although the survivors faced several challenges in their trajectory of pre to post transplant period, they were able to triumph over their challenges. This study necessitates that health care professionals must continue supporting patients; especially, during the sensitive phases of the treatment. It is particularly important to prepare bone marrow transplant nurses for the effective management of patients\u27 mental stressors, during the intra-transplant phase. Finally, this study highlights the importance of individualized discharge planning, addressing all aspects of the quality of life to help patients maintain and improve their well-being