The experience of survival following Blood and Marrow Transplant in NSW, Australia. (#195)
Background
Over 50% of patients undergoing allogeneic BMT can now be expected to become long-term survivors. Unfortunately many experience significant late morbidity and mortality. Using a cross-sectional survey, we sought to explore the range and frequency of physiological and psychological complications, and the functional status of BMT survivors in NSW, Australia.
Methods
BMT survivors aged over 18 and transplanted between 2000-2012 in NSW were eligible to participate. Survivors completed seven questionnaires; the Sydney Post BMT Study survey, the FACT-BMT (V4), the Chronic GvHD Activity Assessment Self Report, the Lee Chronic GvHD Symptom Scale, DASS21, the Post Traumatic Growth Inventory and the Fear of Recurrence Scale.
Results
583 survivors were contacted and 443 (78%) responded. Median age was 54 years (range 19-79 yrs). Median duration post transplantation was 5 yrs (range: 1-22 yrs). 226 (53.2%) were transplanted for acute leukaemia, 252 (57.1%) had a sibling donor and 216 (47.7%) had myeloablative conditioning.
The most common problems reported were chronic GVHD (69.5%), sexual dysfunction (51.7%), vaccine preventable diseases (41.5%), tooth decay (36.8%), iron overload (32.7%), osteoporosis/osteopeania (29.4%), cataracts (29.2%), hypertension (29%), high cholesterol (24.3%), secondary malignancy (24.1%), depression (23.3%), anxiety (20.5%), diabetes (14.3%), taste alteration (30.7%) altered smell (20.6%) poor appetite (20.1%), and diabetes (14.3%). Full time employment post BMT decreased from 64% to 32.5% and those in the lowest income strata increased from 21% to 36%. 43% of survivors separated or divorced post BMT.
Conclusions
This study provides the most comprehensive account of the experience of survival following BMT in Australia. This data can be used to develop long term models of care to meet the unmet needs of our survivors. Strategies which optimise the benefit, and minimise the prevalence and impact of the adverse late effects of BMT are urgently needed.