Blood and marrow transplant (BMT) survivors have significant medication and healthcare demands post treatment leading to financial, physical and emotional pressures, Australian research shows.
The ongoing burdens cause many to forgo guideline recommended long-term follow-up, according to findings from a large survey of allogenic blood and marrow transplant (allo-BMT) survivors.
The Sydney Post BMT study, is the first to comprehensively investigate the treatment burden experienced by survivors of allogeneic BMT in Australia. Posing questions relating to medication use, medical treatments, referrals, assessments and frequency of hospital or clinic attendance the survey has revealed the ‘workload’ of survivorship.
Haematologists and nurse practitioners involved in the study say the burden of long-term all-BMT treatment is an issue that has received very little discussion in the academic and public media while being a very real concern in practice.
More than a quarter of the 441 allo-BMT survivors who took the survey reported attending their transplant clinic at least monthly more than two years post BMT. Some 26% required multiple regular procedures like venesection and extracorpororeal photopheresis to treat BMT side effects.
Almost 90% reported multiple, regular specialist medical and allied health referral with up to 11 subspecialties and 6 allied health professionals being involved in some respondent’s care.
The most prevalent were ophthalmology (60.3%), dermatology (43.6%), respiratory (28.2%) and endocrinology (23%).
Alongside this were regular appointments to physiotherapists, dieticians and psychologists (24.3%, 24.0% and 19% respectively), with almost half (215/ 441, 48.7%) reporting being referred to more than one allied health professional.
Polypharmacy was also a major problem with 31% of survivors reporting taking five or more medications as part of their long-term follow up care – rates similar to those reported in Australians older than 70 years (36%), report investigators.
On top of that some 54% of respondents also reported using at least one form of complementary medicine such as vitamin therapy, herbal supplements and spiritual therapy, adding to medication costs.
Dr Gemma McErlean, PhD, senior lecturer in cancer nursing at the University of Wollongong and lead investigator told the limbic that adherence to guideline recommended long-term follow up care declined with time since BMT among the survey group, which she warned could place survivors at risk of further increased multi-morbidity, and early death.
“These recommendations involve up to six sub-specialists and 34 tests a year – and that’s if patients are OK. If they have something wrong then they’re going to be subjected to even more treatment.”
Dr McErlean also pointed out that many of the recommendations for long term care weren’t covered by the PBS or Medicare, leaving many patients and their carers under substantial financial pressure, further compromising adherence to follow up care.
According to the survey, over 33% of respondents did not attend for regular dental review, only 31% were fully revaccinated and more than 10% had not undergone any form of long term follow up care assessment or screening.
Taken together the data paints a sobering picture of the long haul and considerable workload of cancer survival – while once simply being alive was considered ‘treatment success’, data such as these provide a clearer perspective of the complexity and burden of living long term after BMT, she says.
“I would hope that this kind of data does allow us to have more open disclosure and open conversations with patients and their families about what undertaking the procedure would mean. I do think patients are well educated and informed but it is with the hard data on overall survival and progression free survival – it doesn’t necessarily paint a true picture of the non-medical side of treatment.”
A case for change
While evidence-based approaches to help survivors manage high treatment burden have yet to be determined, Dr McErlean said the survey data presented the case for change.
“This data really highlights the issues of cancer survivorship; it’s a starting point in terms of being able to provide better information to patients and their families who are contemplating undergoing treatment about what life might look like afterwards so they can consider if they can do what we’re asking of them.”
The study group say clinicians need to establish the extent and impact of treatment burden on patients. There is also a need to develop validated tools to identify the capacity of patients and carers to manage their care, which would flag those who require additional coordination of care needs either from the treatment centre with a BMT Advanced Practice Nurse or via the patient’s GP, said Dr McErlean.
At an individual level, a range of interventions have been suggested that may help decrease treatment burden. Dr McErlean suggested providing patients and carers with practical, instructional materials, simplifying medication and other regimen where possible with controlled release medications, decreasing frequency of dosing and computerised and manual reminders for appointments and medications, for instance. Meanwhile facilitating support group attendance, regular clinician review and including the patient’s support network in their care are also important.
“Just getting patients to survive isn’t enough; we need to ask patients how they are actually doing – are they doing what we’re asking them to do – can they do what we’re asking them to do and can their families do what we’re asking of them?”
The findings are published here.