Cancer Survivorship Study Findings from In-depth Interviews and National Surveys of Cancer Patients and Survivors August 2020
Research Objectives and Questions Better understand the cancer patient and survivor journey from a range of perspectives Building on 2018-2019 NCCS survey findings, get feedback from those who are • connected to NCCS, as well as a more representative sample of the US adult cancer population, including traditionally underserved audiences Better understand the patient experience, including new questions around • mindset, the multi-disciplinary team, clinical trials, and help with side effects Learn more about preparation, experiences, and needs in post-treatment • information and care, and interest in various survivorship resources Drill down on experiences with “redefining functional status” • 2
Methodology Phase 1 In-depth Interviews with Cancer Patients and Survivors Fifteen (15) virtual interviews, approximately 60 minutes-each, March 2020 • Diagnosed within the last 2 years; mix of stages and cancer types • Nationwide recruit: mix of age (half over 65+), race/ethnicity, income (half low income, half middle-upper) • Phase 2 Nationwide Survey of Adult Cancer Patients and Survivors Nationwide sample of n=840, fielded April 15-May 1, 2020 • Oversamples of Blacks, Hispanics, low income, 65+ to analyze these groups with more statistical reliability • Set quotas to make sure representative of US cancer population: age, gender, race/ethnicity, and region (re: ACS and NCI) • Used Dynata, a non-probability online panel provider • Phase Nationwide Survey of “NCCS Connected” Patients and Survivors 3 Nationwide sample of n=479, same field period as above • Emailed invitation to all NCCS email contacts, inviting them to take the survey + 2 reminders • Blue / red = statistically higher / lower by audience 3 Full text of survey questions is in the notes section of slides
National Sample NCCS Connected Gender 49% Male 16% Male 51% Female 84% Female Age 9% Age 18-44 13% Age 18-44 38% Age 45-64 53% Age 45-64 52% Age 65+ 31% Age 65+ Education 19% Less than college 3% Less than college 32% Some college/2-year degree 24% Some college/2-year degree 26% Bachelor’s degree 26% Bachelor’s degree 22% Postgraduate degree 48% Postgraduate degree Income 17% Less than $25k 10% Less than $25k 26% $25k-$50k 14% $25k-$50k 20% $50k-$75k 14% $50k-$75k 14% $75k-$100k 15% $75k-$100k 20% More than $100k 35% More than $100k Insurance 56% Medicare 38% Medicare 13% Medicaid 5% Medicaid 24% Private/employer 43% Private/employer 6% Private/spouse or parents 13% Private/spouse or parents State of Physical 7% Excellent 10% Excellent 50% Good 59% Good 37% Fair 25% Fair 6% Poor 5% Poor Treatment 43% had Chemotherapy 75% had Chemotherapy
Overview of Findings Mindset Expectations Side Effects Concerns Demographic “Doctor Knows Best” about Patients who are Fatigue and mental health Survivors are most Differences treatment is the prevailing “connected” to an issues continue to be the concerned about a Across the survey, there mindset of cancer patients advocacy group like most common side- range of physical health are a few key audiences nationally, and majorities NCCS are clearly a effects. Few feel their and financial issues. whose post-treatment say they are satisfied with different audience. They HCP’s are very helpful in These continue to be concerns are greater: their care. But if you go a have higher expectations addressing these during areas where they do younger, Blacks, layer deeper, there are of care and their HCP’s, treatment, nor do most not get a lot of support Hispanics, women, and cracks in this foundation. and more interested in a doctors bring-up these from their health care chemotherapy patients. And those who report range of resources to key aspects of functional team. There is interest being more involved in help them with decision- status during post- in a website where info treatment decisions tend to making and self- treatment care. can be customized by have more positive post- advocacy. cancer type. 5 treatment experiences.
Audience Mindset
Nationally, Most Cancer Patients Say They Rely on Doctors to Make Treatment Decisions • By almost a 3-to-1 margin, cancer patients/survivors nationally say that they relied on their doctor to tell them what treatment option was best, vs. being involved in the research and decision. “I rely/relied on the “I am/was very doctor to decide on involved in researching treatment options and deciding on the best treatment options and chose the best “Somewhere in the for me” middle” course of action” 18% describes 22% describes 61% describes Please think about your mindset and experiences as a cancer patient. For each set of statements, 7 select the statement that describes you best, or if you are somewhere in the middle. Source=National Sample, n=840
A “Doctor Knows Best” Mentality Is Typically the Default Self Advocates Doctor Knows Best Mentality I trust my oncologist completely, and I go by Be your own advocate. Since I have a family history, I what he says. He’s never tried to pacify me. was clued in. Don’t just blindly take prescriptions or Told me what I needed to do. - Female, 49, Stomach go into a surgery. Ask questions, be informed. Do what’s best for you. You know your body the best. - Female, 50, Skin I contemplated a second opinion, but I felt comfortable with my oncology team right away. Confident with them. - Female, 29, Breast I’ve learned that I have to advocate for myself. They know I want them to coordinate, especially when it comes to my depression and weight. I ask questions. I don’t just settle for just one opinion anymore. I haven’t questioned him thus far. - Female, 47, Thyroid – Male, 69, Prostate 8 Source=In-depth Interviews
Mindset Varies Slightly by Audience Groups More Likely to Groups More Likely to Be Involved in DM: Rely on Doctor: 18-39: 40% • • Metastatic: 71% Prostate: 35% • • Surgery only: 69% Targeted drug: 32% • 65+ years: 66% • Clinical Trial: 31% • Disability Ins: 30% • Males: 65% • • Low income: 63% • White: 63% • Gov insurance: 63% Please think about your mindset and experiences as a cancer patient. For each set of statements, select the statement that describes you best, or if you are somewhere in the middle. 9 *No differences by education Source=National Sample, n=840
The Survey Suggests that Initial Involvement Helps Improve Post Treatment Care Experiences Patients Who Report Being Patients Who Report Relying on Involved in Treatment Decisions their Doctor Felt prepared for post treatment, 55% Versus 50% Spoke to their HCP about post- Versus 40% treatment care, 53% Describe their post-treatment medical Versus 50% care as “excellent,” 59% 10 Source=National Sample, n=840
Patients Are More Proactive in Other Areas Please think about your mindset and experiences as a cancer patient. For each set of statements, select the statement that describes you best, or if you are somewhere in the middle. INFOR ORMATION ON: I do not/didn’t want I want/ed to find out to think or read 63% 11% about cancer and all I could about my hear about all of the cancer diagnosis and bad things. my treatment options. SUPPO PPORT: I am/was self-reliant I take/took advantage and went through of any help, resource my cancer journey 53% my health care team 22% without a lot of help offered me to help me from health care through my cancer providers. journey. GOA OALS: My focus is/was on My focus is/was maintaining my getting rid of the 21% 52% quality of life as cancer no matter much as possible. what. 11 Source=National Sample, n=840
Not Every Patient Is Willing to be a Self Advocate or Accept Support SUPPO PPORT: I take/took advantage of any help, resource my health care team offered me to help me through my cancer journey. I had both, a nurse navigator and a social National Gender worker. The nurse navigator, she was great. She started setting up my appointments and she Male 57% gave me all kinds of…pamphlets for me to read Female 50% while I was going through my diagnosis and I found that very helpful. The social worker set up Age ge rides for me to get back and forth to get back 18-39 55% from the hospital. - Female, 49, Stomach 40-64 51% 65+ 54% Race ce White 51% I don’t have any outside help like social African American 60% workers or case workers. I have no help Hispanic 59% except my oncologist introducing me to Inco come this chemo. Less than $50k 55% – Female, 39, Breast More than $50k 52% Ed Education on No college 54% College+ 52% 12 Source=National Sample, n=840
Mindset Differs among those Connected with NCCS • Those who have opted-in to communication with NCCS are mixed in their treatment decision- making: a third relied on their doctor, a third were very active in making decisions, and another third were somewhere in the middle. “I rely/relied on the “I am/was very involved in doctor to decide on researching and deciding “Somewhere in treatment options and on the best treatment the middle” chose the best course of options for me” action” 30% 35% describes 35% describes Please think about your mindset and experiences as a cancer patient. For each set of statements, 13 select the statement that describes you best, or if you are somewhere in the middle. Source=NCCS Connected, n=479
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