Barriers and Support-System while Considering Hematopoietic Stem Cell Transplant (HSCT): A Qualitative Study of Pre-HSCT Acute Leukemia Patients from a Standalone Transplant Laboratory in India

Abstract

Abstract Introduction Hematopoietic stem cell transplant (HSCT) is the definite treatment for acute leukemia but considering HSCT is challenging for the patients. There are many studies that have described the patients’ experience after HSCT but very few studies have reported their experience before going for HSCT and there is no published report in India on patients’ experience before HSCT. Objective We conducted a qualitative study to understand barriers, and support-system while considering HSCT and the chances of getting matched unrelated donor (MUD) for these patients. Materials and Methods The present study was a qualitative study. Demographic details of 514 patients who consented for the study were noted and the patients and their families were interviewed using a semistructured interview booklet before HSCT. The interview sessions were recorded, transcribed verbatim, and analyzed for emerging themes. The study data were analyzed using QDA Miner Lite 4.0 software (Provalis Research, Montreal, Canada). Descriptive statistics such as frequency and percentage were used. The chances of getting a human leukocyte antigen (HLA)-matched donor were also computed by “HLA-matching software.” Results Acute myeloid leukemia (64.01%) was commoner than acute lymphoid leukemia (35.99%) with male: female ratio as 1.98:1. The study showed nine themes as barriers and six themes emerged in regard to the support system for HSCT decision making. The biggest barriers identified among these patients pre-HSCT were related to cost, probability of “success of transplant,” and probable “quality of life.” The family support was the biggest support system variable followed by “treating doctor.” The chances of getting a MUD for these patients were 13.22% and 5.44% in global and Indian data pool, respectively. Conclusion Deciding upon HSCT can be challenging for patients and understanding of barriers and support-system variables among these patients would provide important insights and help design better counseling techniques for such patients of HSCT and future studies in this context.