Long-term survivors of allogeneic bone marrow transplantation experience financial and occupational costs that should be discussed when treatment is being considered, a Sydney study has found.
PhD student Gemma Dyer, from the Kolling Institute, said almost 600 Australians have an allogeneic BMT each year.
“They are most often for leukaemia, but the range of indications is expanding and the option is being offered to higher-risk patients than in the past,” Ms Dyer said.
“An increasing number of recipients experience long term survival. Many, however, bear the burden of chronic illness and chronic graft-versus-host disease.”
Complications can affect almost every body system, and also include neuropsychiatric problems. Recipients have at least three times the risk of severe or life-threatening conditions compared to their siblings.
“While the impact on quality of life is well-known, the financial and occupational impact on Australian survivors is less clear,” she said.
Ms Dyer and her colleagues surveyed all survivors of allogeneic BMT performed in New South Wales between 2000 and 2012. Survivors were asked to complete a number of questionnaires, including the 402-item Sydney Post BMT Study Survey.
The research team identified 1,475 transplant procedures and 583 survivors. There were 441 who responded, a median of 5 years after transplantation. Their median age was 54 years at the time of the survey, 53% had been treated for acute leukaemia, and 57% had received a graft from a sibling. A total of 69% had chronic graft-versus-host disease, most commonly affecting the skin, mouth and eyes.
“The proportion of recipients in full-time employment halved from 64% pre-transplant to 32% post-transplant,” Ms Dyer said. “The number who were retired increased from 5.4% to 18.8%, and ill-health as the cause of not working increased almost four-fold.”
Household income declined after BMT. Those reporting low income status (<$40,000) increased from 21% to 36% post-transplant, and the proportion with household income >$80,000 fell from 44% to 33%.
“Many survivors are unable to remain in full-time work,” Ms Dyer said.
“The impact is likely to be profound, exacerbating carer burden, social isolation and medication non-adherence.
“Our results suggest that the financial and occupational impacts of BMT should routinely be discussed pre-transplant and should be a focus of continuing education, counselling and support.”