The experience of long-term survival following allogeneic blood and marrow transplant (BMT) in New South Wales (NSW), Australia

Abstract

Allogeneic blood and marrow transplant (BMT) is widely used for the treatment of life threatening malignant and non-malignant diseases in both adults and children. While it provides many patients with their best opportunity for survival it is associated with significant long-term and late mortality and morbidity. The aim of this study was to obtain comprehensive data regarding the late sequelae of BMT in an Australian setting, and to use that data to identify gaps in service provision provided to this vulnerable and high-risk group. BMT survivors aged over 18 and transplanted between 2000-2012 in NSW were eligible to participate. Survivors completed a cross sectional survey instrument which included: 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. Of the 669 BMT recipients alive at study sampling, 583 were contactable and 441 (66% of total eligible, 76% of those contacted) returned the survey. The most common problems reported were chronic GVHD (69.3%) sexual dysfunction (57%; 51% males & 66% females), vaccine preventable diseases (41.5%), tooth decay (36.8%), iron overload (32.5%), taste alterations (30.9%) osteoporosis/osteopeania (29.1%), cataracts (28.9%), hypertension (29%), high cholesterol (24.0%), secondary malignancy (24.5%), depression (23.3%), anxiety (20.6%), altered smell (20.7%) poor appetite (20.2%), and diabetes (14.3%). High risk health behaviours such as smoking, drinking (>14 standard drinks/week), and not being ‘sun smart’, were reported by 7.5%, 7.7% and 22.9% of survivors respectively. Almost 50% were overweight or obese. Regular exercise was reported by 45.1% of respondents. Adherence with cancer screening following BMT was low; 32.4% bowel cancer check, 63.4% PAP smear 53.5% mammogram, 52.3% skin cancer check, 36.2% prostate cancer check. Full time employment post BMT decreased from 64% to 32.5% and those in the lowest income strata increased from 21% to 36%. Ill-health as the cause for not working increased almost 4-fold pre to post-transplant. When asked about preferences for long-term care approximately 75% wished to have their follow-up in their BMT centre or in an expert facility linked to their BMT centre. This study provides the most comprehensive account of the experience of survival following BMT in Australia. Survivors experience a high incidence and a broad range of physiological and psycho-social late effects of BMT, many of which are not currently addressed. Importantly, BMT also has a major financial impact on survivors with many no longer engaged in full-time employment and/or experiencing a decline in socioeconomic status and having difficulties with social reintegration. These results reaffirm the need for continuing education, and policy and practice reform.