Patient and physician priorities around therapy decision-making do not always align, shows an international qualitative study investigating the influences underpinning disease-management decisions in patients with acute myeloid leukaemia (AML) who are unsuitable for intensive therapy.
Physicians have most influence in treatment decision-making say patients. The shock of diagnosis, as well as patients’ treatment knowledge, may compromise their own role in the process.
Furthermore, the limited number of suitable medications for this group of older AML patients significantly affects treatment decisions, found the study.
Bringing together experts from Canada, US, and the UK, the study results were presented as a poster at this year’s virtual British Society of Haematology (BSH) meeting. Nigel Russell, professor of haematology at the University of Nottingham, led the work, that aimed to evaluate how choices are made for patients who are unsuitable for intensive chemotherapy due to age, frailty, or co-morbidities. The roles of patients, physicians and the families were explored.
“The therapeutic options for these patients are limited, although this is improving and extends to non-intensive therapy or best supportive care,” said Prof Russell. “There is clearly an unmet medical need in these patients.”
Dr Katrina Farrell, consultant haematologist, NHS Forth Valley, Scotland, commented on the work. She sees many AML patients who are unsuitable for intensive therapy. “The problem is more common than we might realise. Patients and their families don’t necessarily feel as involved in their decision-making as they might, and perhaps we need to communicate options better, because there are better treatment options increasingly becoming available.”
She added that survival in AML has not seen much improvement over the last four decades, but now there are, effectively, chemo-free novel therapies that are better tolerated by older people. “Azacitidine is better tolerated and hand on heart we can say this in a discussion with our patient that there is the possibility of surviving for months and even years when they wouldn’t have done so before.
“As new treatment options come along, we’ll be having more positive conversations with our patients around low-intensive therapy versus best supportive care.” Meanwhile, she said: “I think we are pushing towards low-intensive therapy to improve both length of life and quality of life.”
Complex Decision-making in AML Patients Unsuitable for Intensive Therapy
Decision-making in this group of patients is complex, said Prof Russell, who is often faced with such decision-making in his practice. “With intensive therapy the intention is curative, but involves aggressive chemotherapy and a month or 2 in hospital. Most younger patients will follow that route. It is a much clearer decision for them.”
There is a different approach to disease management in older patients. “Treatments are non-curative, will prolong life, or are palliative. Some patients are unfit for any therapy and end up having best supportive care.”
Decision-making by patients may be compromised by a lack of information to an extent, Prof Russell noted. Numerous factors influence treatment decisions, and it is important to understand the trade-offs that patients, their families, and physicians are willing to make to ensure the optimal treatment path is followed.
Factors Influencing Choice-making
A total of 15 US-based AML patient-family member dyads, and four physicians in the US, three in the UK and three in Canada took part in 60-minute interviews. Patients were at least 65-years-old and deemed unsuitable or unwilling to take intensive chemotherapy. Most (n=13/15) patients had never received treatment for AML. Family members were at least 18 years old, demographically diverse, and had direct contact with the patient at least once a week. Physicians were oncologists and/or haematologists who worked in a variety of settings and treated more than 10 cases of AML a month.
Results fall into three key categories: physicians have greatest influence in treatment decision-making; the shock of diagnosis, as well as patients’ level of treatment knowledge compromising their role in decision-making; and the limited number of medications suitable for older AML patients significantly influencing treatment decisions.
Family members (n=13/15) and patients (n=9/15) rated the possibility of being hospitalised as ‘very important’, but only one physician did (n=1/10).
“The patient’s and physician’s priorities don’t always align, for example, patients might wish to avoid hospitalisation, and this was rated highly by patients, but physicians didn’t think it important. This might be more relevant now with COVID-19,” explained Prof Russell.
One US-based patient is quoted: “There’s no place I’d rather be than home. I don’t want to languish someplace, in a hospital or hospice.”
“Unfortunately, it is not entirely possible to treat these patients without hospitalisation at some point. If they don’t need hospitalisation, they will need frequent visits to the day-case unit or clinic. Location of care and access is important too,” explained Prof Russell.
Regarding treatment side-effects, patients (n=6/11) and family members (n=5/14) believed that the side effects, for example vomiting or hair loss, would be worse than AML symptoms. Specifically, most patients not on treatment (n=9/13) reported a fear of side effects as the primary reason for opting not to take treatment. One is quoted as saying: “The toll it would take physically, I mean I’m sick regardless… it’s just piling more on to what I already have.”
Shock of Diagnosis and Information Gap
The emotional trauma leaves some patients, the majority, unable to fully process the information provided, said Prof Russell.
“It’s a scary time for patients. I think the holistic way of treating, taking into account the patient and family and their expectations too is key,” he remarked. “For many of these patients, their hopes are not going to be met. Patients want good quality of life, to live longer and avoid hospitalisation and infections, but not all these things will be met. We need to give realistic expectations.”
A US-based patient is quoted: “Honestly I was probably too depressed to understand anything. I was in shock.”
Educating patients about the available treatment options is important, Prof Russell said. “Patients need to be adequately informed about what is on offer in terms of treatments and options. That means spending time with the doctor and specialist nurses too.”
Two patients and a physician specifically commented that there was a lack of available treatment options for older, unwell AML patients. “There wasn’t going to be an option for me to do chemo and there was no treatment options.” From the provider side, one US-based physician said: “A lot of times these patients cannot have any treatment. It’s just – it’s very challenging.”
When asked specifically about first-line non-intensive chemotherapy prescribed to AML patients, there were international differences in the range of drugs that were prescribed. Eight drugs were reportedly prescribed as first-line treatments in the US, while only four drugs were prescribed in the UK and/or Canada.
Half the physicians reported that the availability of treatments would influence treatment decisions (n=5/10). A US physician is quoted: ”Today we’re doing a lot more treatments than we used to. I think we used to send a lot of patients to best supportive care before we had the things I mentioned available.”
COI: Professor Russell DSI, Jazz, Astellas, Pfizer Inc has no conflicts. Dr Farrell also has no conflicts.
Virtual British Society of Haematology (BSH) meeting. 9-14th November, 2020. Poster number BSH2020-PO-017.