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Patients with lung cancer lack knowledge of clinical trials
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BARCELONA — Half of patients with lung cancer surveyed across Europe had no concept of a cancer clinical trial, and 22% had never heard of one, according to research conducted by Lung Cancer Europe and presented at International Association for the Study of Lung Cancer World Conference on Lung Cancer.
“Lung Cancer Europe is an umbrella group; we have over 20 organizations from across Europe within our group,” Anne-Marie Baird, PhD, a lung cancer researcher and advocate representing Lung Cancer Europe, said in an interview with HemOnc Today. “When we looked at the unmet-need areas within our extended group of organizations, clinical trials were something that kept coming up. So, we decided to do a report on clinical trials and clinical trial access.”
Baird said after conducting a review of relevant literature and policy sources, she and her colleagues compiled an online survey, which was then translated into multiple European languages.
“With so many different languages spoken in Europe, not everyone has attained a high enough level of English, nor should they be expected to,” she said. “We were really trying to find out if there was any unmet need or information gap, so we could do something about it.”
Baird and colleagues administered the survey to 262 patients with lung cancer and conducted qualitative interviews with 15 participants representing the medical community, patient advocate organizations and the pharmaceutical industry. Researchers administered the survey to patients living in Poland (19.5%), Italy (18.7%), Denmark (9.9%), Spain (9.2%) and other European countries.
They found that in terms of clinical trial criteria, the final participants of trials do not always represent the characteristics of many patients. Additionally, results showed a lack of support for patients playing a role of research collaborator and an undervaluing of patient input and knowledge.
In a key finding, 50% of respondents indicated they did not know what a clinical trial was.
“This was concerning, because when we broke it down further, into stage II or stage III, it turned out that even those who thought they knew what a clinical trial was didn’t really know what it was at all,” Baird told HemOnc Today. “We’re thinking our number of 50% was actually much higher than that if you really asked about the nitty-gritty. That’s a big, big issue.”
Top sources of patient information about lung cancer included the internet (89%), physicians (44%), social media (37%), patient organizations (28%) and other patients (28%).
Researchers observed associations between patient willingness to participate in a clinical trial and the level of patient knowledge about clinical trials. When asked if they would participate in a clinical trial, those with no knowledge (36%) replied that they were neutral on the subject, those with average knowledge (44% to 53%) gave a positive response and those with good knowledge (61%) gave a very positive response.
Most patient respondents (75%) noted that they considered it beneficial for patients to work with researchers on a clinical trial, whereas 15% replied that this might be beneficial, 9% stated they didn’t know, and 1% stated that they didn’t think patient collaboration would be beneficial.
“Information is a huge barrier and patients do want to be involved. They do want to know more, but in order for patients to invest their time, that time has to be valued,” Baird told HemOnc Today. “What a lot of advocates and patients are finding is that for many grant bodies and ethical review committees now, you have to have patient involvement.”
Unfortunately, Baird said, many researchers interpret “involvement” as simply giving the patient the document to review.
“That’s the endpoint, and there’s no scope for making any modifications,” she said. “So, we want to work to educate and empower patient advocates and patients themselves to sit at the table in those clinical trial development meetings and give their input from the get-go. To do so at the very end does no good. A tick box is not going to make a difference.” – by Jennifer Byrne
Reference:
Baird AM, et al. Abstract MA24.01. Presented at: International Association for the Study of Lung Cancer World Conference on Lung Cancer; Sept. 7-10, 2019; Barcelona.
Disclosures: Baird reports personal fees and honoraria from Merck Sharp & Dohme and Roche Ireland. Please see the abstract for all other authors’ relevant financial disclosures.
Perspective
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Deb Whippen
In this study, Baird and colleagues identified the obstacles to patient involvement at every level in the clinical trial process. The idea is if you identify obstacles facing patients, you can come up with recommendations to address them. One is to engage with local authorities; another is to get support from the local community.
The researchers quantified where in the clinical trial process patients can become involved. Most patients are involved at the end, but there are also opportunities for patient involvement in the beginning, especially for patients who have medium and high expertise. The researchers identified things these patients can do right at the outset, from agenda-setting to fundraising to patient accrual. It’s about understanding what the barriers are, because most patients are interested in clinical trials, but they don’t participate. According to this study, patients don’t even know much about clinical trials.
The results of this large study will be of value to clinical practice, and multiple reports are coming out of it. I think this can help to improve the quality of clinical trials, particularly in lung cancer, an area where improvement is especially needed.
Only 3% of patients participate in clinical trials. Part of that is because of funding. However, part of it is about informational barriers and stigma, and this study is an important step toward changing that.
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