How can we further improve lymphoma care?

Medicom interviewed Ms Lorna Warwick, CEO of the Lymphoma Coalition, in the context of World Lymphoma Awareness Day, taking place on 15 September every year. Ms Warwick first explained in which ways the community aims to raise awareness on lymphoma.

“On World Lymphoma Awareness Day, we're trying to respond to a few different issues at once,” said Ms Warwick. “It falls under the umbrella of a campaign called ‘We Can't Wait’. One of the issues we face is general awareness, which includes awareness around the topic of COVID-19. We have learned that the symptoms of lymphoma can mimic COVID-19, and we have seen a concurrent drop in lymphoma diagnoses. We need to raise awareness around general symptoms and encourage people to get checked if they have persistent symptoms, because that could be an expression of a lymphoma.”

“For some areas of the world, the campaign is used to encourage regular lymphoma care or to improve post-pandemic lymphoma care,” Ms Warwick continued. “There have been drops in available nursing care and, in some cases, difficulties accessing medication. We have to prioritise these issues if we want people with lymphoma to be treated the right way.”

“Finally, an issue we are dealing with from a Lymphoma Coalition perspective is about how we are tracking and talking about lymphomas. The first person who was able to identify a lymphoma, Dr Thomas Hodgkin, was able to get a subtype of lymphoma named after him. All the other subtypes are categorised as non-Hodgkin lymphoma. This means absolutely nothing. Patients think they have been told something really important, and the diagnosis of a non-Hodgkin lymphoma is what they remember when they are first diagnosed. But if you google non-Hodgkin lymphoma, so many different things come up; this is confusing for patients. We actually have names for all those individual subtypes now, so there is no reason why we shouldn't talk about the subtypes individually,” argued Ms Warwick.

Medicom: What are some of the solutions to unmet needs in lymphoma, that have progressed in the last few years?

“First, there are several new therapies available,” responded Ms Warwick. “For example, CAR T-cell therapy is available for patients who in the past would not have survived because they had exhausted the traditional chemotherapies. Even though these therapies are quite pricey, we are making some headway in approvals and improving the access to these novel therapies, including access to some newer targeted therapies in certain subtypes. COVID-19 has had some impact on the speed of regulatory approvals. Currently, we're investigating how we can encourage the continuation of approvals of those novel medicines in a realistic way.”

“Next, when we are looking at things like registries and the categorisation of lymphomas, we see improvements year after year. When we ask patients if they are being told which subtype of lymphoma they have, we see the numbers go up each year. Organisations like the World Health Organization already use specific subtypes when they are talking about lymphomas. Unfortunately, when you look at data coming from the International Agency for Research on Cancer and the Global Cancer Observatory, they still only categorise lymphoma by Hodgkin and non-Hodgkin.”

Medicom: I can imagine that, for decision-making, a patient needs to know the subtype they are dealing with, right?

“Absolutely, non-Hodgkin lymphoma is not something you can treat. There are over 80 subtypes, and they have different prognoses and different treatment pathways. Patients have to know the exact subtype, or they are not going to be able to participate in any kind of decision-making.”

“Research shows that patients who are well-informed and have specific details of their subtype have a better overall patient experience,” added Ms Warwick. “They know where to go in the hospital and they are better at handling their side effects at home. They also know when they need to go to the hospital for advanced care. In short, well-informed patients are reporting better overall outcomes of disease management.”

Medicom: Is the phenotyping of tumours keeping up with the patients’ needs?

“Overall, the answer is probably no,” acknowledged Ms Warwick. “I think we do better with those subtypes where there is easier, less expensive testing available. It also helps that clinical practice guidelines outline what tests should be done and what the results should show.”

“If we look at certain subtypes, like diffuse large B-cell lymphoma, patients may be treated differently depending on whether they have a germinal center-derived B-cell lymphoma or an activated B-cell lymphoma. This information is important for doctors,” Ms Warwick emphasised. “Although it doesn't necessarily change the first-line treatment, it can change access to treatments in the second line and beyond.”

Medicom: What kind of message do you want to give from the Lymphoma Coalition to physicians?

“Don't assume that your patients will be overwhelmed by too much information. I think doctors try to curtail the disease-specific information they are giving to patients because they are worried that patients will be overwhelmed,” Ms Warwick added. “Our retrospective data from a biennial global patient survey with thousands of respondents showed that only about 10% of the patients report being overwhelmed by the amount of information they received. The broader population, about 90% of the patients, said that they were getting either enough information or that they wanted more. Even if the patient doesn't want to read all the information at that point in time, doctors should give them either hard copies or links to websites where they can go and find the information they need at a later point in time.”

“Also, make sure you are having good two-way conversations with patients about what is really bothering them,” continued Ms Warwick. “Patients are much more likely to talk about their medical issues when they speak to a doctor. However, they usually don't report their psychosocial concerns, even though these may be impacting their medical issues. For example, patients are not likely to talk about fatigue with their doctor because they think that there is nothing that can be done. There are however things that can help a patient cope with fatigue, and there are many possible causes of that fatigue. Communicating about these issues is therefore really important.”

“Most of our patients say that they would like their doctor to be their primary source of information. At the same time, patients tell us they often don't understand what has been said to them,” Ms Warwick pointed out another issue. “To try and resolve their confusion, they go to the internet, which of course is hit and miss. You can find lots of good and bad information on the internet, or information that doesn't apply to your specific case. Patients might also go to patient organisations. We champion this, because oftentimes patient organisations are keepers of great information, and they can really help individual patients.”

“Finally, many doctors think that they have to solve all of the patients’ problems, but that is not true. You can refer your patients to other avenues of support, including community resources, patient organisations, other departments within the hospital, social workers, or people that focus on palliative care. There are plenty of options to help patients cope with their disease and side effects, just make sure that they are getting all of their concerns addressed.”

 

 

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Posted on 14 September 20238 April 2024