NCCS Survivorship Survey: Cancer Survivors Share Their Top Concerns

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:

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.

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.

Survivorship Needs

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  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).

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 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.