NCCS State of Survivorship: Survey 2024 wordmark
NCCS State of Survivorship: Survey 2024 wordmark

Introduction

The 2024 State of Survivorship report from the National Coalition for Cancer Survivorship (NCCS) offers detailed insights into the experiences of cancer patients, survivors, and caregivers in the U.S., based on national surveys conducted between August and September 2024.

With more than 2,100 participants, this report examines key areas such as treatment decision-making, post-treatment care, clinical trial participation, side effects, and financial burdens.

Our 2024 survey also introduced new questions, exploring reasons for participating — or choosing not to participate — in clinical trials, seeking second opinions, and experiences with survivorship care plans, among other topics.

Download The Report

thumbnail of 2024 State of Survivorship Executive Summary
Executive Summary
Detailed Findings

Web Briefing

On October 30, NCCS hosted a web briefing to present the 2024 survey findings. Pam Loeb, Principal of Edge Research, and NCCS CEO Shelley Fuld Nasso discussed the results in detail and took questions from an audience of survivors, health care professionals, researchers, and more.

Briefing Topics
00:00 Introduction, Survey Objectives
05:03 Methodology & Who Responded
08:09 Patient/Caregiver Decision-Making
13:42 Second Opinions & Care Team Trust
18:02 Clinical Trials
21:21 Seeking Resources
23:50 Cancer Care Experiences
28:41 Side Effects
32:04 Financial Impacts
37:37 Work and School Impacts
40:37 Cancer Impacts on Caregivers
41:47 Post-Treatment Care Experience
47:23 Survivorship Care Plans
52:33 Q&A from Audience

The briefing recording can also be watched on YouTube.

The detailed findings slide deck of the 2024 survey data contains more data than is featured in the briefing. Download the full slide deck here »

Treatment Decision-Making

Icon: Two Hands Holding Each Other
Icon: Two Hands Holding Each Other

Patient and Caregiver Roles

Most cancer patients continue to rely on their doctors to choose the best treatment options for them, with 53% of patients deferring to their doctors. While overall, 27% of patients were actively involved in researching and deciding on treatment, some demographic groups report being very involved. Almost half of both younger and Hispanic patients report they were very involved in their treatment decisions.
Icon: Conversation Bubble
Icon: Conversation Bubble

Self-Advocacy

One-third of patients felt the need to advocate for themselves to receive the best treatment and care, particularly among Black patients (59%), younger patients (56%) and Hispanic patients (48%). These groups are less likely to rely solely on their doctors’ recommendation.
Icon Doctor on Computer
Icon Doctor on Computer

Second Opinions

Only 29% of patients sought a second opinion during their cancer care. Younger patients (47%), Hispanic patients (43%), and LGBTQ+ patients (42%) were more likely to do so. Among those who did not seek a second opinion, the overwhelming reason is trust in their health care team (82%), followed by not wanting to wait to start treatment (26%).

Read more data about decision-making in the detailed findings slide deck. 2024 Detailed Findings (PDF) »

Clinical Trial Participation

Icon: Roads Diverging
Icon: Roads Diverging

Participation Rates and Barriers

Participation in clinical trials remains consistent, with key drivers being the doctor’s recommendation (51%), wanting to contribute to science (41%), and the prospect of access to new treatments (28%). Among patients who did not participate in clinical trials, 74% of patients said that they were not asked, which is the largest barrier.
Icon: Mind Working
Icon: Mind Working

Reasons for Not Participating

Patients also cited concerns about side effects, treatment protocols, and location as secondary barriers, with these concerns being more prominent among younger patients and patients of color.

Read more data about clinical trials in the detailed findings slide deck. 2024 Detailed Findings (PDF) »

Post-Treatment Care and Survivorship Care Plans

Icon: Clipboard and Vitals
Icon: Clipboard and Vitals

Post-Treatment Care

Two-thirds of patients who are within five years of completing treatment report receiving post-treatment care. At the same time, majorities of those who are over 5 years out are not receiving post-treatment care, with most saying their doctor told them it was no longer needed.
Icon Doctor
Icon Doctor

Oncologists vs. PCP for Post-Treatment Care

Most survivors see an oncologist (54%) or other specialist (26%) for post-treatment care. The share of patients seeing a primary care physician (PCP) for post-treatment care has dropped significantly in recent years, with only 19% reporting they are currently seeing a PCP, though 38% indicated they would consider it. Some have concerns about PCP’s knowledge and ability to detect a recurrence.
Icon: Blue Ribbon
Icon: Blue Ribbon

Survivorship Care Plans

Less than half of the patients who completed treatment received a survivorship care plan. Among those who received a plan, most indicated it was provided through a verbal discussion (63%) or as a hard copy (63%). However, many patients desire more detailed information in their plans, including side effects and future screenings.

Read more data about survivorship care in the detailed findings slide deck. 2024 Detailed Findings (PDF) »

Financial Impacts of Cancer

Icon: Person Lifting Heavy Weight with Dollar Sign on it
Icon: Person Lifting Heavy Weight with Dollar Sign on it

Financial Burdens

Over 40% of patients reportedbeing financially impacted by their cancer diagnosis, with caregivers (69%), Black (55%), Hispanic (68%), people with Stage IV cancer (62%) and LGBTQ+ patients (69%) disproportionately affected. By far the most burdened by financial concerns are young adults, 90% of whom report at least one financial impact. These patients were more likely to have borrowed money, delayed significant life events, or applied for government assistance to cover costs.
Icon: Prescription Costs
Icon: Prescription Costs

Prescription Costs

On average, patients spent $935 out-of-pocket on prescription drugs in the past year. Younger patients reported higher out-of-pocket costs at $2,482, and over 70% of younger patients expressed interest in a monthly payment plan to spread the cost of their prescription medications.

Read more data about the costs of cancer in the detailed findings slide deck. 2024 Detailed Findings (PDF) »

Side Effects and Quality of Life

Icon: Side Effects (Low Battery)
Icon: Side Effects (Low Battery)

Most Common Side Effects

Fatigue remains the most reported side effect (46%), followed by fear of recurrence (42%) and pain (37%). Mental health issues such as depression and anxiety are also prevalent, particularly among younger patients (57%), with nearly half (47%) of LGBTQ+ patients reporting mental health challenges during treatment.
Icon: Medical Treatments
Icon: Medical Treatments

Symptom Management

Despite 92% of patients reporting at least one side effect, the vast majority did not discontinue treatment because of them. Still, managing the impact of side effects on quality of life remains a significant concern.

Read more data about side effects and quality of life in the detailed findings slide deck. 2024 Detailed Findings (PDF) »

Employment and Work Impact

Icon: Briefcase
Icon: Briefcase

Employment Challenges

Over half of the patients surveyed (51%) continued working during their treatment, with nearly a third indicating they felt they had no choice but to do so. This pressure was especially high among younger patients, 48% of whom felt obligated to keep working during their treatment.
Icon: Speedometer
Icon: Speedometer

Work Productivity

The cancer diagnosis significantly affected the productivity of both patients and caregivers. More than two-thirds of younger patients (67%) said their work or school productivity was “largely” or “completely” impacted. Patients reported missing an average of 21 hours per week of work, and caregivers missed an average of 15 hours per week.

Read more data about employment impact on patients and caregivers in the detailed findings slide deck. 2024 Detailed Findings (PDF) »

See More Charts and Data

The 2024 State of Survivorship Survey detailed findings presentation deck contains much more information, including data on additional topics and more detailed tables and charts.

Download the Detailed Findings (PDF) »
Download this Executive Summary (PDF) »

Request Survey Data

The National Coalition for Cancer Survivorship (NCCS) accepts requests from researchers and advocacy organizations wanting to use the State of Survivorship data set to support their research and practice for the purpose of improving quality of care for those touched by cancer.

Submit a Request »

Program Supporters

Image of Survivorship Survey 2024 Sponsor logos - Presenting Sponsor: Pfizer - Advocacy Partner: Stupid Cancer - Sponsors: Genmab | The Anna Fuller Foundation, Bristol Myers Squibb, Daiichi Sankyo, Novartis | Eisai, Kite A Gilead Company, PhRMA

Take Action

Link to: Survivorship Champions

Become a Survivorship Champion

Survivorship Champions is a program for all clinicians and researchers, both oncology and primary care, who are interested in improving survivorship care and primary care’s role in caring for cancer survivors.

Learn More and Join »
Link to: Cancer Policy and Advocacy Team (CPAT)

Join CPAT

The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

Learn More and Join »
Link to: Survivor Stories

Share Your Story

NCCS represents the millions of Americans who share a common experience – living with, through and beyond a cancer diagnosis. By sharing your story of how you have been touched by cancer, you are supporting the national cancer survivorship movement.

Share Your Story »

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