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NCCS Survivorship Survey: Cancer Survivors Share Their Top Concerns

September 15, 2019/in Cancer News, Cancer Policy Blog, NCCS News Access to Care, Care Planning, Financial Toxicity, Health Care Coverage, Health Equity, Quality Cancer Care, Survivorship Care NCCS News /by actualize
Elevating Survivorship Logo

As part of its Elevating Survivorship initiative, the National Coalition for Cancer Survivorship (NCCS) fielded an online survey to understand cancer survivorship experiences and needs across a range of cancer patients.

NCCS and our partner patient advocacy organizations promoted the survey to our constituents, and 1,380 cancer survivors responded.

Some of the key findings include:

Patients' top concerns are a mix of financial, physical, and emotional

Figure 1. Click image to expand.

Treatment Experiences

  • Patients report many physical and emotional side effects (See Figure 1). Fatigue and anxiety top the list of both the most common and long-term effects. These are also among the most severe side effects reported by patients.
  • However, patients report that while healthcare providers are helpful at addressing their physical side effects such as nausea and vomiting, health care providers (HCPs) are far less helpful at addressing fatigue, anxiety, depression and cognitive effects.
I do wish that my health care team did more to address the emotional side effects, particularly in screening for it. I developed a lot of anxiety, but I just thought it was normal. Only in retrospect did I realize I had a problem.Survey Respondent

Post-Treatment Information and Care

  • Few feel very prepared for the transition to post-treatment, nor informed about how to manage their health post-treatment.
  • While most patients have spoken to a healthcare provider about post-treatment care, over half say they asked their doctor/HCP, and far fewer say their provider initiated these conversations.
  • Satisfaction with post-treatment care is varied, with few describing it as excellent. As a result, more rely on online sources for information rather than their HCPs.
I wish that my health care team would address survivorship issues and long-term effects of my cancer diagnosis. At this point I am just told to call if there are any changes in the way that I feel, this leaves me feeling uneasy and uncertain about the future of my health.Survey Respondent

Survivorship Needs

  • Survivorship Resource Availability

    Figure 2. Click to expand.

    When asked to identify their level of concern about a range of issues, financial issues tops the list (getting/keeping health insurance, having financial support), followed by managing ongoing side effects, uncertainty about the future, and having the energy to make it through the day.

  • There is clearly a disconnect between patient concerns and support from HCPs. Less than a third rate their HCP as “very helpful” on their top issues.
  • Many are interested in survivorship resources, especially programs for managing long-term symptoms, but few say these are available from the HCPs today (See Figure 2).
I would like to meet more cancer survivors. I feel now that I am a different person and that no one understands what I’ve been through. Most people think that because you survived, that you are great and not in need anymore. It would be helpful to have some friends who have gone through the same journey.Survey Respondent

ACCC and NCCS Joint Survey Report

The Association for Community Cancer Centers (ACCC) conducted a companion survey of its provider members, and the results of the two surveys were published in ACCC’s Oncology Issues journal:

Read “Elevating Survivorship: Results from Two National Surveys” [PDF] »

Read the Final Survey Report

NCCS thanks the following organizations for promoting the survey to its stakeholders: CancerCare, Fight Colorectal Cancer, Melanoma Research Alliance, Ovarian Cancer Research Alliance, the LIVESTRONG Foundation, Melanoma Research Foundation, Supporting Our Sisters Inc., Cancer Support Community, and LUNGevity.

Read the full final report of the Survivorship Survey below or download it here (PDF Document).

Grant funding for Elevating Survivorship provided by: Bristol-Myers Squibb, AbbVie, Pharmacyclics, Takeda, Celgene, Novartis, and Eisai.


Elevating Survivorship

Tags: cancer care, Cancer Survivorship, care planning, financial issues, financial toxicity, Medicare, Patient Navigation, research
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December 22, 2020
The National Coalition for Cancer Survivorship (NCCS) joined other member organizations…
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NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients

December 9, 2020
The National Coalition for Cancer Survivorship (NCCS) recently submitted comments…
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NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients

December 3, 2020
The National Coalition for Cancer Survivorship (NCCS) opposes the Most Favored Nation…
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  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • COVID-19 Resources for Cancer Survivors
    • Order Our Resources
  • News
    • Cancer Convos Podcast
  • Events
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us

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Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute