The National Coalition for Cancer Survivorship (NCCS) has released a new survey showing how cancer survivors rate different aspects of their cancer journey. The 2020 State of Cancer Survivorship Survey includes a total of 1,319 respondents who participated in the survey during April 15-May 1 of 2020. All data were self-reported.
Breast, prostate, and skin cancer were the top three represented in the survey; some respondents had multiple cancer types.
Overall, survivors said they were generally satisfied with their care, but they felt that their health care providers were not as helpful as they could have been in addressing treatment side effects such as fatigue and mental health issues. And only 17 percent reported that they were given a post-treatment survivorship plan.
In a webinar to present the findings, NCCS CEO Shelley Fuld Nasso, MPP, said the organization wanted to include as broad an adult cancer population sample as possible in terms of demographics. Thus, there was oversampling of African Americans, Hispanics, low-income cancer patients, and those over age 65. The national survey included a sample of 840 cancer patients, using an online panel provider.
The survey also included a smaller sample of 479 respondents invited to participate from the NCCS database. NCCS is an advocacy organization, so this smaller sample tended to represent patients who had taken a self-advocacy role in their diagnosis, treatment, and follow-up care.
This sample tended to be younger, have a higher female composition, be in a higher socioeconomic bracket, and have higher expectations for their care. They were also more likely to participate in a clinical trial. Nasso noted that, when people are faced with a difficult diagnosis, some want to be proactive and some do not. "Frankly, you shouldn't have to be a self-advocate to get good cancer care," she commented.
"This was a survey to really drill down on patient perspectives" from a variety of topics, said Pam Loeb, a principal in Edge Research, the company that conducted the survey for NCCS. She said the findings were based on in-depth interviews. Overall, she noted the survey shows that when patients are actively involved in their care it helps improve their post-treatment experiences.
Key points of the NCCS survey include the following:
* A "doctor knows best" mindset is the prevailing attitude of patients in the larger national sample. This is the default attitude of the majority of survey participants, said Loeb. Specifically, 61 percent of cancer survivors said they are more likely to rely on their physician to tell them what treatment options are available to them versus being involved in the research and decision-making (22%). Population groups that are more likely to rely on their physician as the major decision-maker are age 65 or older (66%); male (65%); lower income (63%); and have Medicare or Medicaid as their health insurance. Loeb said most patients (90%) in the larger survey segment felt their cancer care was coordinated; that figure dropped to 80 percent in the smaller survey sample.
* Patients who reported being more involved in their initial treatment decisions tended to have more positive post-treatment care experiences. Patients who reported being involved in treatment decisions felt better prepared for post-treatment (55% vs. 50%); proactively spoke to their physician about post-treatment care (53% vs. 40%); and described their post-treatment medical care as "excellent" (59% vs. 50%).
* Patients who are connected to an advocacy group have higher expectations of care and their health care providers. Results from the smaller study sample show that some of these patients were involved in decision-making from the beginning (35%), while others became more involved over time.
The survey shows that "not every patient is willing to be a self-advocate or accept support, Loeb noted. About half (53%) of survivors took advantage of any resource their health care team offered to help them, but among those who did not there were few differences by age, gender, race, income or educational level. Loeb said she was surprised that willingness to get support from the health care team did not depend on any demographic factors, but rather seemed to be most affected by personality.
* Patients said their health care team should have done a better job at addressing side effects during treatment. Topping the list of a range of side effects patients said they experienced during or after treatment is feeling overly tired (49%); depression and/or anxiety (30%); loss of appetite and/or taste (28%); muscle or joint pain (27%); and nausea/vomiting or diarrhea (27%). As to side effects, "There are some demographic differences," said Loeb. Higher rates of these side effects were reported by females, African Americans, Hispanics, and patients undergoing chemotherapy.
* Overall, well under 50 percent of patients in the larger sample said their physician was helpful in addressing their feelings of fatigue (only 35%); depression/anxiety (just 34%); loss of appetite and/or taste (only 34%); and muscle or joint pain (just 39%). During post-treatment visits, nearly half of patients discussed physical function (49%); and quality of life (47%) with their physicians, but far fewer covered other aspects of functional status, including the most common side effects, such as depression/anxiety (just 29%), and fatigue (28%).
* Patients have strong concerns about a number of physical, emotional and financial issues, but did not feel their health care team adequately addressed them. While a majority of survivors said they discussed what to expect after treatment with their physicians (62%), far fewer received information about exercise and nutrition (39%), long-term side effects (39%), or mental health support (24%). Only 17 percent said they received a post-treatment survivorship plan. Post-treatment concerns were greater among younger survivors, African Americans, Hispanics, women, and chemotherapy patients. Loeb said she was especially struck by how much younger cancer survivors who responded to the survey were struggling.
Survivors' top concerns were maintaining a healthy weight (64%); getting enough exercise (61%); being there for their friends and family (57%); the cost of their medical care (56%); and having enough energy to make it through the day (56%). Only 26 percent said their physician was very helpful on maintaining a healthy weight; just 24 percent said their physician was helpful on getting enough exercise (24%); just 30 percent reported their physician was helpful on being there for family and friends; only 30 percent found their physician helpful on the cost of medical care; and just 25 percent found their physician helpful on having enough energy to make it through the day.
Advice from cancer survivors who responded to the survey to other patients gives further insights into their attitudes toward their disease and their care.
A 71-year-old female lung cancer patient said, "Pick doctors who will spend time with you and answer your questions. Find someone who is understanding and willing to listen."
A 29-year-old woman with breast cancer said, "What's worked for me is to think of it as a job that you push through. Make a checklist, celebrate each victory, got to focus on the end point, take control of what you can, and let go of what you can't."
A 29-year-old man with testicular cancer said, "Trust the process and listen. Just continue to move forward and get it out of the way."
A 65-year-old woman with non-Hodgkin lymphoma said, "Stuff they didn't tell me during treatment to help with nausea, sores, muscle pain. I couldn't lift my head-was not prepared. Tell patients that it's normal to have anxiety and depression after chemo."
And a 39-year-old female breast cancer survivor said, "I would tell them to keep your faith because you need that. Think about your outcome. I would tell them to fight as hard as you can. And prepare yourself for the biggest fight of your life. It feels like your body betrayed you, so now you have to fight. Keep your head up and keep trucking. Cancer is not going to overcome you."
Peggy Eastman is a contributing writer.