Patients need more support to navigate precision oncology

As the complexity of the cancer landscape increases, miscommunication and misunderstanding emerge as major obstacles to patient self-determination


The unprecedented pace of progress and innovation in oncology over the last 10 years has drastically increased the chances of being cured but also the complexity of the care pathway that cancer patients must navigate. Although the rise of patient support and advocacy groups has further cemented the principle of shared decision-making in clinical practice in the past decade, some believe improvements in physician-patient communication are needed to ensure people’s preferences and values are respected throughout their disease journey.

The field of lung cancer has undergone one of the most rapid transformations: “It was not that long ago that the only options for patients were the standard chemotherapy and, if that did not work, just another type of chemo,” says Prof. Sanjay Popat, consultant medical oncologist at The Royal Marsden Hospital in London, UK, contrasting this with current practice where immunotherapy is becoming the standard of care and molecular targeted therapies are available for a multitude of genetic alterations.

The advent of precision medicine in lung cancer has led to the parallel emergence of specialised patient organisations for individual mutations like EGFR Resisters. Jill Feldman, patient advocate and cofounder of the support group, witnessed this evolution as she lost several family members to the disease before eventually being diagnosed herself in 2009: “Before social media, you were lucky just to see 10 lung cancer patients in one room together. Today, our community alone has around 2,700 members in more than 70 countries,” she reports.

Personalised medicine is poorly understood

In spite of treatment personalisation and improved access to supportive resources, however, a recent survey presented at the European Lung Cancer Virtual Congress 2021 by the Global Lung Cancer Coalition (GLCC) found that more than one in 10 respondents among patients with lung cancer, in and outside of Europe, did not know what type of tumour they had, and almost one in five did not feel involved in decisions about their care. Feldman is not surprised by these results: “Even in our community of EGFR Resisters, who tend to be highly-educated, well-resourced and proactive individuals, there is still a tremendous amount of misunderstanding about what an exome mutation like EGFR is and what it means to have one,” she reports. “For instance, we get questions from people worried about passing EGFR on to their children because they do not know the difference between germline and somatic mutations.”

One key aspect is the way the complexity of cancer is conveyed to patients in one-on-one conversations for which oncologists need to reinforce or acquire new skills. “Molecular reports are difficult to interpret and contain a lot of details beyond the two-line summaries that laboratories provide,” Popat observes.

Our profession needs to be able to popularise the concepts enough to feel comfortable discussing them with patients

Prof. Sanjay Popat

This is all the more urgent, he says, because lack of understanding often leads patients to misinterpret their care path. “In the case of adenocarcinoma in never-smokers, for instance, the reasonable chance of finding a genetic alteration in their tumour means we need to wait for the molecular results to select the appropriate treatment, because we do not want to give chemotherapy if it is not necessary. A consequence is that diagnosed patients do not start on treatment immediately, contrary to what they may expect and desire.”

The language of genetics is quite new in cancer, and if not employed carefully may lead patients to draw erroneous conclusions. Feldman describes the anguish felt by some when test results come back negative for targetable mutations, the latter being perceived as a “green pass” to the most innovative treatments. “I see people who think they are doomed when they test negative,” she says. “Outside of the biomarker groups, there is a real problem when it comes to understanding prognosis and treatment among individuals who are not eligible for some of the newer therapies.” According to Feldman, placing undue emphasis on targetable mutations being more common in lung cancer patients who never smoked has rapidly shifted a heavy blame on those who did, thus undermining their ability to engage with their medical team. Popat agrees: “Never-smoking lung cancer is a distinct set of diseases, so understanding what role tobacco—either active or passive—played in the biology of a patient’s tumour is part of the medical decision-making. However, doing so in a careful, non-judgemental way is critical as in the hustle and bustle of a busy clinic, it can be easy to forget that we are not asking just another biological question.”

Sharing is caring

Some argue that personalising cancer treatments should go hand in hand with personalising patients’ involvement in the decision-making process. “Throughout a patient’s journey, painting an accurate picture of the disease and available treatment options is key to allowing a person to make informed decisions for themselves and regain a sense of control that cancer often deprives them of,” highlights Prof. Maria Die Trill, Head of the Psycho-Oncology Unit at Hospital Universitario Gregorio Marañón in Madrid, Spain, for whom communicating effectively with patients is one of oncologists’ most challenging tasks due to emotional components and people’s reactions. “No subject should be taboo, from opting for therapies that will alter their quality of life, through personal choices about whether or not to have children in the presence of a genetic predisposition to develop cancer, all the way to deciding how they want to spend their last months, weeks and days of life,” Die Trill explains.

Popat further argues that shared decision-making is not just desirable, but necessary where choices need to be made between multiple medicines, sometimes in the same class, with pros and cons to different treatment sequences. “In this context there are many things to discuss with patients, in more or less detail depending on their wishes,” he says. “At a minimum, they need to understand the potential prognoses and treatments available for their tumour type, and whether the intent of treatment is long-term survival, even cure, or if this is unlikely and we are just trying to achieve the best survival and quality of life possible.”

It is key to help patients to feel empowered rather than overwhelmed by the science when they have to learn about it in a distressed and vulnerable state

Prof. Maria Die Trill

According to Die Trill, the way in which information is shared is equally important: “Identifying the patient’s information needs, using simple language, allowing for questions, giving information gradually and repeating it over time, using visual aids like drawings or the patient’s scans, asking the person to repeat back what they understood."

Empathy breeds mutual understanding

Research also suggests that efforts to improve the delivery of information to patients should account for the effects of emotional distress on their cognitive ability to process it (Cancer Med. 2019;8:4081-4088). “We know that medical interviews which integrate questions about patients’ psychological wellbeing are more effective than those that address only the physical conditions being treated in the clinic: oncologists need to ask patients how they feel, even if it is uncomfortable,” says Die Trill.

In fact, an investigation into patients’ perspectives on empowerment in the healthcare setting (ecancer 2019;13:912) found that the most valued element in the course of cancer treatment was the presence of an empathetic relationship with the clinician.

Patients need to know that the doctor caring for them also cares about them

Jill Feldman, EGFR Resisters

Feldman confirms. “Among other things, this means going beyond the science and asking relational questions such as, ‘What is important to you besides living longer?’ In our community, we also try to reinforce the message to patients that they need to have these conversations openly to ensure that future medical decisions will be aligned with their preferences and values.” Because these are often socially and culturally determined, Die Trill adds that, “All of us who work in multicultural societies need to be sensitive to the role that family, faith and other factors play in patients’ acceptance of medical information (Curr Oncol. 2015 August;22(4):e264-e272).”

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