The Experience and Health-Related Quality of Life after Haploidentical Stem Cell Transplantation for Adults with Sickle Cell Disease.

Abstract

Haploidentical hematopoietic stem cell transplantation (HSCT) from partially matched first-degree relatives (e.g., parent, sibling, child) is the newest therapy available to reverse symptoms of adults with sickle cell disease. Because of this innovation, little is known about the recipients' transplant experiences and how this type of transplant affects their quality of life. We describe the experiences and health-related quality of life (HRQOL) of five (3 female, 2 male) of nine eligible adults with sickle cell disease who received HSCT. Participants completed a brief demographics form, an HRQOL survey, and a 90-minute audio-recorded interview. We produced a series of matrices and summaries for our content analysis in addition to descriptive statistics. We report on recipients' perspectives about the process, outcomes, personal life goals, and how their experience relates to their HRQOL scores. Participants' impressions of their experience varied, but their HRQOL scores paralleled their complications. Those with successful transplants and minimal complications scored highest. Those with successful transplants but significant complications scored in the middle and the individual with an unsuccessful transplant scored the lowest. The four with successful transplants remarked that their health had improved and expressed optimism. We identified three themes: (a) the relief of being pain free, (b) new availability of opportunities, and (c) no regrets about undergoing the transplant. These results delve into the complex factors affecting health and the success of adults with SCD who have a haploidentical HSCT.