Survey of cancer survivors reveals low rates of second opinions, primary care follow-up
Key takeaways:
- The survey included new questions about seeking second opinions, self-advocacy and post-treatment follow-up.
- Key findings underscored a need to reduce the percentage of cancer survivors lost to long-term follow-up.
The National Coalition for Cancer Survivorship’s newest State of Survivorship report provides insights into the experiences and priorities of people with cancer, survivors and caregivers in the United States.
The report — which summarized the findings of surveys conducted between August and September 2024 — explored topics such as treatment decision-making, post-treatment care, clinical trial participation, treatment-related adverse events and financial burdens.
The surveys, conducted with more than 2,100 participants, also asked patients about their rationale for participating in or declining to participate in clinical trials, seeking second opinions and post-treatment follow-up.
“We use this information to drive everything we do, because our mission is to improve care for everyone touched by cancer,” Shelley Fuld Nasso, MPP, CEO of National Coalition for Cancer Survivorship (NCCS), told Healio. “We try to understand not only the clinical care they receive, but also the gaps in their quality of life and other issues they are facing. We try to build on what we learn every year.”
Healio spoke with Fuld Nasso about the survey’s key findings and how the insights gleaned from the newest report can be used to improve outcomes for people affected by cancer.
Healio: What are the objectives of the NCCS State of Survivorship survey?
Fuld Nasso: This is our sixth year doing this survey, and we aim to use it to better understand patients’ experience of their care from diagnosis through treatment and into post-treatment care. Over the years, we’ve expanded our focus to include caregivers, as well. We present this information at medical conferences, to policymakers, and to corporations that serve patients. I’ve presented it on Capitol Hill, and we share it with other people in the government when we submit comment letters.
Healio: What did the survey reveal in terms of patient participation in treatment decision-making?
Fuld Nasso: We’ve seen consistently each year that patients continue to rely on their physicians to choose the best treatment for them. More than half let their doctor choose the treatment as opposed to being somewhat involved in decision-making. We do see demographic groups where this is different — young patients and Hispanic patients are more likely to be involved. One new question we asked this year was whether they felt they needed to advocate for themselves to get the best treatment and care. About a third of patients said they did, and this was even higher among Black, Hispanic and younger patients.
Healio: What did your survey show with regard to seeking second opinions?
Fuld Nasso: This was a new question this year, and we found that only about 29% sought a second opinion. We also asked why they did or didn’t seek a second opinion. Of those who did not, 82% said it was because they felt comfortable and trusted their doctor’s recommendation. They also mentioned not wanting to wait to get treatment, but this was a distant second at 26%.
I was talking with one of our board members, Otis Brawley, MD, from Johns Hopkins University School of Medicine, and he said he would like to see about two-thirds of patients seeking a second opinion. So, by his measure, these rates are much lower than they should be. He also said that at places like Johns Hopkins and other academic medical centers, second opinions often have a high rate of substantially changing the treatment recommendation. We’re planning to work with Dr. Brawley to develop some patient education materials around that.
Healio: What new information did your survey yield about cancer clinical trial participation?
Fuld Nasso: About 10% of our survey respondents said they participated in a clinical trial — this is fairly consistent. There also wasn’t much of a gulf between the percentage of people who said they participated and those who said they were offered a trial. So, this year, we inquired into the “why” of that. For patients who did participate, doctor recommendation was the number one reason, followed by wanting to participate in science and have access to the best treatments. Among those who did not participate, 74% said they were not offered a trial. That’s very important — there’s a lot of discussion around increasing diversity in clinical trials and ensuring access but, if we aren’t even offering it, it doesn’t matter.
Healio: What did the survey show about long-term survivorship follow-up?
Fuld Nasso: When we asked about post-treatment follow-up, only about two-thirds of patients were still being followed up in the first 5 years. Additionally, most patients who were more than 5 years out were not receiving follow-up care.
We also found that the use of primary care for follow-up care has decreased significantly, with only 19% reporting that they are seeing a primary care provider for follow-up. Patients feel that they need to go to their oncologist for that post-treatment care. Our survey found that 54% of survivors see their oncologists and 26% see other specialists for post-treatment care. There are not enough oncologists in the country to take care of all 18 million cancer survivors. If that many patients are not getting post-treatment care, that is a big concern.
Healio: Based on results of this year’s survey, what unmet needs do you think need to be addressed going forward?
Fuld Nasso: One thing I would definitely like to get a better handle on is educating primary care physicians to be able to take care of patients with cancer and survivors. I do think there are some primary care physicians who want to be able to do this and understand the needs of survivors. So, I would love to see a way to help train primary care physicians to be able to be that survivorship point person. That’s something I’d like to see us work toward.
Reference:
- National Coalition for Cancer Survivorship. State of Survivorship Survey. Available at: https://canceradvocacy.org/state-of-survivorship-survey/. Accessed Dec. 26, 2024.
For more information:
Shelley Fuld Nasso, MPP, can be reached at sfuldnasso@canceradvocacy.org.
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