ORIGINAL ARTICLE The experience of survival following allogeneic haematopoietic stem cell transplantation in New South Wales, Australia G Gifford 1,2,3 , N Gilroy 4 , G Dyer 2,4 , L Brice 3 , M Kabir 5 , M Greenwood 1,2,3 , S Larsen 6 , J Moore 7 , D Gottlieb 8 , M Hertzberg 9 , J Kwan 8 , G Huang 8 , J Tan 7 , L Brown 10 , M Hogg 8 , C Ward 1,2,3 and I Kerridge 1,2,3 Allogeneic haematopoietic stem cell transplantation (allo-HSCT) entails long-term morbidities that impair survivors’ quality of life through broad physical and psychosocial sequelae. Current data and survival measurements may be inadequate for contemporary Australian allo-HSCT recipients. This study sought to comprehensively describe survivorship in an up-to-date, local setting through validated measurements and a novel questionnaire designed to complement and address limitations of current instruments. All adults who received an allo-HSCT between 2000 and 2012 in New South Wales were eligible and included, if alive, those literate and consenting to the study, which encompassed seven survey instruments. Four hundred and forty-three survivors participated, which is 76% of contactable (n= 583) and 66% of eligible survivors (n= 669). Chronic GVHD (cGVHD) and co-morbidity rates were similar to published data. Noteworthy results include prevalent sexual dysfunction (66% females, 52% males), loss of income (low income increased from 21 to 36%, P o0.001) and employment (full-time employment fell from 64 to 33%, P o0.001), suboptimal vaccination (31% complete), and health screening (≈50%). Risk factors for poor vaccination and health screening were cGVHD, younger age, less education, rural/regional residence and transplantation o2 years. This study suggests that improvement in survivorship may necessitate structural changes in the current delivery of health services. Bone Marrow Transplantation (2016) 51, 1361–1368; doi:10.1038/bmt.2016.135; published online 23 May 2016 INTRODUCTION Over the past two decades, advances in allogeneic haematopoie- tic stem cell transplantation (allo-HSCT) have led to concomitant increases in the number of people undergoing this procedure and improvement in survivorship. Between 2001 and 2011, 90 000 allo- HSCTs were performed globally, 1 with 4369 of them performed in Australia. 2 With improvements in donor selection, conditioning therapies and supportive care, more recipients are living longer, 3 and up to 85% are expected to be alive at 10 years. 4,5 Although allo-HSCT provides a clear benefit, it is associated with significant morbidity and mortality. 6 A range of complications may occur anytime post transplant, including ‘early’ ( o3 months), ‘delayed’ (3 months to 2 years), ‘late’ (2–10 years) and ‘very late’ (410 years). 7 Although contemporary allo-HSCT recipients are living longer than historical cohorts, published data suggest that allo-HSCT survivors experience a 30% lower life expectancy than a matched population 6 and may experience a compromised quality of life (QoL) owing to the ongoing physical and psychological sequelae of cumulative therapies, 8,9 failure to reintegrate socially 10,11 and uncertainty of prognosis. 12 International and local bodies have recognised that research into the health, psychological and functional status of survivors is necessary to identify and address unmet needs of survivors and their families, enable better education and decision- making around BMT and inform the design and delivery of multidisciplinary health services essential to the care of long-term survivors. 13–15 This provides the rationale both for international and national registry studies of survivorship and ‘local’ studies of the specific experience of allo-HSCT survivors. This study sought to comprehensively describe contemporary allo-HSCT survivorship in an Australian population with the intention of providing up-to-date information to candidates for allo-HSCT, their families and/or guardians regarding the long-term sequelae of allo-HSCT, supporting local clinical and health policy decision-making around allo-HSCT and optimising the care of survivors. Specifically, the aims of this study were to document the incidence and range of late complications and their association with the health and functional status of allo-HSCT survivors, address limitations in the current literature around survivorship, particularly with regards to the financial, occupational and psychosocial impact of allo-HSCT, and identify gaps in the existing care of survivors in New South Wales (NSW), Australia. PATIENTS AND METHODS Patients and procedures Participants were eligible if they had undergone an allo-HSCT between 1 January 2000 and 31 December 2012 in NSW, Australia’s most populous state (population 7.5 million), 16 were 418 years of age at time of transplant, literate in English and were alive at the time of sampling. Potential participants’ identity and phone number were retrieved from the four NSW adult allogeneic transplant centres’ databases. Patients were informed about the study in a clinic visit or via a telephone call from one of 1 Northern Blood Research Centre, Kolling Institute, University of Sydney, Sydney, NSW, Australia; 2 Northern Clinical School, Faculty of Medicine, University of Sydney, Sydney, NSW, Australia; 3 Department of Haematology, Royal North Shore Hospital, Sydney, NSW, Australia; 4 Blood and Marrow Transplant Network, New South Wales Agency for Clinical Innovation, Sydney, NSW, Australia; 5 Westmead Breast Cancer Institute, Sydney, NSW, Australia; 6 Institute of Haematology, Royal Prince Alfred Hospital, Sydney, NSW, Australia; 7 Department of Haematology, St Vincents Hospital, Sydney, NSW, Australia; 8 Department of Haematoloy, Westmead Hospital, Sydney, NSW, Australia; 9 Department of Haematology, Prince of Wales Hospital, Sydney, NSW, Australia and 10 Department of Haematology, Calvary Mater Hospital, Newcastle, NSW, Australia. Correspondence: Dr G Gifford, Department of Haematology, Royal North Shore Hospital, Reserve Road, St Leonards, Sydney, NSW 2065, Australia. E-mail: grace.k.gifford@gmail.com Received 13 January 2016; revised 30 March 2016; accepted 1 April 2016; published online 23 May 2016 Bone Marrow Transplantation (2016) 51, 1361 – 1368 © 2016 Macmillan Publishers Limited, part of Springer Nature. All rights reserved 0268-3369/16 www.nature.com/bmt