Cancer Survivors Share Their Top Concerns in NCCS Survivorship Survey, Indicating Significant Gaps In Care
The National Coalition for Cancer Survivorship (NCCS) conducted an online survey as part of its Elevating Survivorship initiative with the goal to understand cancer survivorship experiences and needs across a range of cancer patients.
According to the NCCS, 1,380 cancer survivors responded with the following results:
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
- 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).
Additional feedback from the survey includes:
“More understanding about managing long term side effects and/or new ones that arise from previous treatment would be helpful."
"I think there are 'survivorship' issues that should really be discussed as part of treatment and not just when treatment ends."
The report indicates that insurance coverage, financial support, and long term symptom management are top patient concerns. There is also a high level of interest in access to resources/programs for these issues through HCPs. However, few HCPs are currently providing them and many patients wonder where they can go to get these supports.