Cancer patients have misconceptions about immunotherapy, expecting it to be a huge breakthrough in efficacy but with little or no knowledge about the toxicities, Australian research shows.
According to a series of in-depth interviews with 29 Australian patients receiving pembrolizumab for their stage IV melanoma, hope is the key issue underpinning treatment decisions.
Patients have typically heard the anecdotal success stories – former US president Jimmy Carter for one – yet often don’t hear, don’t recall or don’t understand the risk of immonotherapy toxicities.
Dr Donna Milne, a nurse consultant in the melanoma and skin service at the Peter MacCallum Cancer Centre, told the limbic it was an understandable response that probably needs to be better managed carefully by the clinical team.
“Our patients are so reliant on hope in terms of their coping and in terms of maintaining their quality of life in some regards so I think we can’t underestimate the impact of hope,” she said.
“But I think it is up to the clinician to have the conversation about best case scenario/worst case scenario so there is some realistic information being provided.”
The interviews revealed patients perceived immunotherapy to be very safe and were unable to recall any of the potential toxicities. In one anecdote, a patient attributed his gastrointestinal symptoms to food poisoning.
The study confirmed that patients rely heavily on their clinician’s recommendation about treatment with the majority not wanting any additional information.
However Dr Milne said the study highlighted the lack of understanding by patients about the potential for toxicity or not recognising and acting on toxicities when they arose.
“It’s a wake up call that the one-size-fits-all approach to education about toxicity was not meeting the mark, which is why we went down the path of developing some videos as another means of providing that information.”
The service has introduced videos delivering information to patients by patients as an addition to the education delivered by health professionals or in printed resources.
Dr Milne said clinicians may also not be fully aware of their patients’ values and preferences when discussing treatment options.
“So is living as long as possible their priority or is their quality of life their priority and how are they going to deal with the potential toxicities that can arise from these drugs, some of which can actually be life-threatening?”
The interviews also highlighted that patients were reluctant to trust their GP’s or local treatment centre’s expertise with immunotherapy or the management of side effects.
“I do think it’s changing slowly. That was very much a concern in the early days when immunotherapy was only being given at big treatment centres like here at Peter Mac but since some of these drugs have become available on the PBS and they’re commonly prescribed outside of big treatment centres then local and regional services are getting experience with them.”
Dr Milne said patients can be encouraged to be more informed and proactive about their treatment with simple resources such as wallet cards documenting the drugs they were on, toxicities that might occur and how they need to be treated.
“It’s becoming clear that patients on immunotherapy really need input from a whole range of health professionals – it’s no longer just the medical oncologist involved in managing toxicities. Because of the array of toxicities that can occur we are really need to focus on communication within a team of health professionals including the gastroenterologist, the endocrinologist, respiratory physician, etc. All of those specialists have something to contribute.”