A new survey of cancer survivors from the National Coalition for Cancer Survivorship (NCCS) shows that the coronavirus pandemic did not have an adverse effect on their care. While previous reports in Oncology Times have shown that the pandemic resulted in skipped cancer screenings and missed or delayed appointments, in this representative sample of survivors conducted during May 2021, patients said their care continued despite significant challenges.
Specifically, 82 percent of respondents said their care stayed the same during the pandemic, while 8 percent said their care was better during the pandemic than before it began. Only 4 percent said their care was worse than before the pandemic.
"We were pleased," said Shelley Fuld Nasso, MPP, the CEO of NCCS, during a webinar briefing to release the results of the survey, which NCCS does annually. Nasso knows that cancer centers had to make a great number of changes during the pandemic to continue caring for their patients, and she said it is satisfying that some 90 percent of survivors were not aware of these changes and did not feel that the care itself had changed.
Some 40 percent of respondents reported having telehealth appointments with their health care providers and gave them high ratings, but the large majority still prefer in-person visits to telehealth appointments, especially for the first visit and for physical therapy/rehabilitation appointments.
The nationwide 2021 State of Cancer Survivorship Survey-conducted in partnership with Edge Research-included 1,104 adult cancer survivors; data were collected from the American Cancer Society and the National Cancer Institute. The survey respondents were drawn from a wide range of stages of diagnosis, demographics, and socioeconomic levels, and were representative of the population in terms of age, gender, race, and ethnicity, said Pam Loeb, a principal with Edge Research.
Breast and prostate cancer patients make up the largest number of survivors in the survey sample. Loeb also noted the trial group oversampled for Stage IV/metastatic cancer, adding that the survey also included in-depth virtual interviews with survivors.
She said the survey included a smaller sample of 500 survivors who are connected to NCCS, and are generally more informed and feel more empowered to be involved participants in their care. Nasso said those in this smaller sample tend to expect more from their cancer care, are less easily satisfied, and are better able to find the support they need.
Overall, 75 percent of cancer survivors described their care as "excellent." As one said, "I am alive, period." Some 68 percent described their main goal as getting rid of their cancer, no matter what. Respondents over the age of 65 were more likely to describe their care as excellent. "If people are alive, then they are happy with their care," said Nasso.
The breakdown of the overall 75 percent who rated their care as excellent is as follows: 78 percent of those 65 and older said their care was excellent; 57 percent of those aged 18-39 rated their care as excellent; 77 percent of White patients said their care was excellent; 69 percent of Black patients rated their care as excellent; and 64 percent of Hispanic/Latino patients rated their care as excellent.
Nasso said the fact that fewer younger survivors not on Medicare rate their care as excellent "highlights the needs of young adult survivors." She also said the data show that significant disparities exist in equal access to high-quality care.
In this year's survey, survivors were more involved in their treatment decisions: 44 percent said their mindset was to rely on their doctor to make treatment decisions, compared to 61 percent in the 2020 survey. And 33 percent said they were very involved in their care.
"What we don't know is why," said Loeb. Was this increased involvement in care an effect of the pandemic? "This is a trend that we're going to continue to watch," she said.
The new survey data also show that when survivors have excellent support and financial resources they are more likely to have positive experiences and outcomes on their cancer journey, said Loeb.
"Having a support system in place to help you throughout the journey" is the top piece of advice from survey respondents to other cancer patients. A support system may include family, the care team, friends, and one's faith. In this survey, 53 percent of respondents said their support was excellent; younger, low-income female and metastatic survivors reported having less support.
Loeb said those in upper income levels were more likely to describe their support as excellent. Some 62 percent of respondents who said their main support is family described their support as excellent; while only 40 percent of respondents who said their main source of support was not family members said their support was excellent. In this survey sample, 18 percent of those aged 18-39 said their biggest support was their health care team, while 24 percent of Hispanics/Latinos said so. Among Blacks, 26 percent said their faith was their biggest source of support.
Loeb said it was clear that those survey respondents who reported that their treatment was just good, fair, or poor had less support, lower incomes, and felt their care was less coordinated and they had no options or voice in their care.
The new survey shows that oncologists and surgeons are popular with survivors, while primary care providers get significantly lower ratings. Specifically, 68 percent gave oncologists high ratings, while 61 percent gave surgeons high ratings.
Overall, 93 percent of survey respondents said health care providers coordinated their care well. Some 75 percent said they could always talk to their health care provider about their concerns, but there were gender differences, with 77 percent of males and 70 percent of females reporting they could engage in such conversations.
"Cancer patients are concerned about a host of physical, emotional, and financial issues," noted Loeb.
Nearly half-47 percent-of survey respondents expressed concerns about the high costs of cancer care. These financial concerns were more pronounced for women, younger patients, Hispanics/Latinos, and low-income patients. Some four out of 10 respondents said they had made financial sacrifices due to their cancer diagnosis, such as withdrawing money from their retirement savings, with vulnerable patients expressing making higher sacrifices. Specifically, 84 percent of patients aged 18-39 said they had experienced financial sacrifices, 65 percent of Hispanics/Latinos said they had experienced financial hardships, and 61 percent of Stage IV/metastatic survivors said they had experienced financial hardships.
The survey asked survivors about side effects and symptoms; overall, 84 percent said they experienced at least one symptom. Some 45 percent reported being "overly tired," with females (56%) reporting more fatigue than males (34%). Survivors with metastatic disease experienced more symptoms. In addition to fatigue, survivors reported experiencing nausea and vomiting, diarrhea, sexual problems, depression, and anxiety. Nasso said the survey shows that the management of physical symptoms is better than that for cognitive and psychosocial issues.
The survey asked respondents what the term "survivor" means to them and whether they are comfortable with the words "cancer survivor." Some 85 percent in the national survey said they are comfortable with the term; the comfort level with considering oneself a cancer survivor increases over time, with 63 percent of those in treatment considering themselves survivors and 93 percent of those 10 or more years past treatment considering themselves survivors.
Nasso noted that, in the smaller sample of NCCS connected survey respondents, 90 percent said they are comfortable with the term "cancer survivor," while just a few felt that the term was not strong enough.
The NCCS represents more than 17 million Americans who are currently cancer survivors. Nasso said the organization's annual surveys show gaps in care and support that need to be addressed, and help the NCCS focus its advocacy, policy, and educational efforts. "Every year, we ask more questions" on the surveys to gather more information, she noted.
Peggy Eastman is a contributing writer.
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