Patients need to be aware of the employment-related impact of allogeneic blood and marrow transplants, with a study by haematologists in NSW showing it was associated with a fall in work status and in household income.

A survey of 441 transplant recipients revealed full time employment rates slumped from 64.6% before treatment to 32.2% after treatment.

Participation in any work – including full time, part time or casual – dropped from 84.2% before treatment to 57.8% after treatment.

Retirement rates increased from 5.4% to 18.8% with most (65.8%) reporting they had retired due to ill health.

Other people not identifying as retired were also not working due to ill health.

Researcher Professor Ian Kerridge, from the University of Sydney, told the limbic the most significant determinants of changes to work status were age and developing chronic graft versus host disease (cGVHD).

“So transplantation is definitely associated with a big financial hit and it’s much higher than I think anybody anticipated. And the other thing is about 50-60% of people get cGVHD and they are in trouble.”

For those still working, there were significant changes to the type of work people did after their treatment. Reasons given for not returning to their previous field of work included physical limitations, concern about health risks in the workplace, and psychological, emotional or cognitive limitations.

Participants also reported a wide range of concerns including workplace discrimination, forced redundancy, employers concerns about liability, exhausting their sick leave, unsatisfactory redeployments and re-allocation of hours or shifts.

Not surprisingly, the number of people in the lowest household income group (<$40,000) increased with treatment from 20.7% to 36.3% and those with the highest level of household income (>$80,000) pre-treatment dropped from 46.1% to 34.4%.

“We demonstrate that survival is associated with significant and substantial reductions in full time employment, any paid employment and in household income compared with the general population,” the study said.

Professor Kerridge said it was not reasonable to tell patients the risk of biological side effects and not prepare them for the financial and social hit they may experience.

“Concentrating on the likelihood of getting mouth ulcers and diarrhea and not telling somebody they are going to be unemployed makes no sense. It’s a profound change to people’s lives.”

“We now know that there is a financial cost of illness and treatment and we need to tell people routinely when they and their families clearly need to know. If families are going to have a severely compromised lifestyle, they need to know as well.”

He admitted such conversations required a cultural change for medical professionals.

“It’s never been part of the medical communication with patients; it’s never been part of the information disclosure. Where it is possible to give accurate information and to give nuanced patient-centric information then we should.”

Very few patients (2.4%) received any counselling regarding their legal rights to employment.