Long-term treatment burden following allogeneic blood and marrow transplantation in NSW, Australia: a cross-sectional survey.

BACKGROUND: Allogenic blood and marrow transplant (allo-BMT) is an arduous treatment used increasingly for many life-threatening conditions. Recognition of the profound impacts of the long term and late effects is ever-growing, as is the healthcare workload (treatment burden) of survivorship.

PURPOSE: To quantify the treatment burden of long-term survival following allo-BMT, regarding the range of health services, therapies and investigations accessed by survivors.

METHODS: A large, multi-centre cross-sectional survey of adult allo-BMT survivors transplanted between 2000 and 2012 in Sydney, Australia. Participants completed six validated instruments and one purposed designed for the study, the Sydney Post BMT Study (SPBS), answering questions relating to medication use, medical treatments, referrals, assessments and frequency of hospital/clinic attendance.

RESULTS: Of the 441 allo-BMT survivors, over a quarter who were more than 2 years post BMT attended the hospital clinic at least monthly, and 26.7% required a number of regular medical procedures (e.g. venesection, extracorpororeal photopheresis). Specialist medical and allied health referral was very common, and compliance with internationally recommended long-term follow-up (LTFU) care was suboptimal and decreased as time from BMT increased.

CONCLUSION: Respondents reported a large medication (conventional and complementary), screening, assessment and health care burden.

IMPLICATIONS FOR CANCER SURVIVORS: Treatment burden contributes significantly to the 'workload' of survivorship and can have a severe and negative impact on BMT survivors, carers and the healthcare system-making it difficult to comply with optimal care. Clinicians must be primed with skills to identify survivors who are overburdened by the health care required for survival and develop strategies to help ease the burden.