The long haul: Caring for bone marrow transplant patients in regional Australia

Abstract

Objective: To evaluate the experience of, and services to, patients from rural and regional Australia referred to a large urban tertiary referral hospital for allogeneic haematopoietic cell transplantation (allo-HCT) and to compare their quality of life with similar populations. Design and setting: A cross-sectional survey of allo-HCT recipients referred from the Calvary Mater Newcastle to Westmead Hospital, Sydney, NSW. Subjects Thirty-seven of forty adult survivors of allo-HCT (92.5%) who underwent transplant between 1999 and 2008 and were at least three months post transplant. Intervention: All subjects: completed a validated measure of quality-of-life (QoL) in bone marrow transplant recipients (FACT-BMT Version 4) and the Regional/Rural BMT Needs Assessment Survey. Results: Most patients (79%) were between one and fve years post transplant. Almost all reported having been sufficiently prepared for transplant and received most information and support from the Nurse Coordinator. Despite the fact that 89% of patients reported significant adverse effects of allo-HCT, >60% still reported an acceptable quality of life. Importantly, however, about a third of patients experienced financial difficulties associated with transplantation and felt pressure to return to work. Conclusion: Patients referred for allo-HCT should be advised about the arduousness of transplant but also reassured that most survivors will experience acceptable levels of functioning and QoL one to two years after transplant. With sufficient local support and with appropriate nursing care and coordination the experiences of regional/rural patients is comparable with other allo-HCT patient populations. Further investigation into vocational rehabilitation is warranted due to the significant financial and occupational pressures reported by survivors of allo-HCT.