There was a buzz of excitement throughout Team Vivor as we tuned in on October 3rd to hear the National Coalition for Cancer Survivorship (NCCS) report out on their survey results on the annual State of Survivorship Survey.
The information in this survey truly matters to our community: NCCS is an organization active in the survivorship world that pioneers research, advocacy, and action on many different issues for cancer survivors, their families, and for health care providers. Each year they conduct a State of Survivorship Survey to connect directly with the survivorship community and get a sense of the most pressing issues faced by patients.
This year, NCCS surveyed over 2,300 participants representing a wide range of cancer types, ages, stages, demographics, and socioeconomics. We were thrilled to see caregivers included for the first time this year, as we recognize the impact and importance of this role.
Here are our top 5 takeaways from the results of the survey:
- Words matter:
The term “cancer survivor” starts at diagnosis and includes those on active treatment, post treatment, and individuals living with stage four disease. When asked about the terminology individuals prefer when referring to themselves, 85% of patients overall said they consider themselves a “cancer survivor” (90% post treatment and 72% with Stage IV cancer). This highlights the need for comprehensive survivorship programs targeted to the specific unique needs of individuals and caregivers across the care continuum.
- Survivors need more support managing symptoms:
The survey revealed that 90% of patients encountered at least one side effect during treatment, with a significant portion of survivors continuing to grapple with these symptoms post-treatment. These included major concerns such as fatigue, emotional distress, fear of cancer recurrence, and challenges with sexual health. Despite the magnitude of these issues for nearly all survivors surveyed, the study showed these issues were not consistently addressed in conversations with their healthcare providers. This contrast underscores the need for tailored survivorship care and communication focused on health issues that matter most to survivors.
- Caregivers are critical:
Caregivers including family and friends play a vital role in the cancer experience. They reported often being more likely to seek comprehensive information about diagnoses and treatments, are more critical of the care team, and are more focused on quality of life than patients reported. They also were more likely to report physical, emotional, and mental health issues and experience isolation. In order for survivorship to be truly comprehensive, we must address the needs of this population alongside survivor needs.
One quote from a caregiver particularly stood out to us and spoke to the magnitude of the impact of this experience:
“I got kidney stones because I wasn’t drinking enough water. I was very sleep deprived. I had to take Xanax there for a little bit because my nerves were just unhinged. I gained weight, lost weight. I fluctuated.”
- The workplace needs to adapt:
Most survivors and caregivers reported working or wanting to work, but struggled with missing work, needing to work fewer hours, or experiencing income instability. Many survivors surveyed said work was a helpful way to stay engaged and focused on things other than cancer. The time is now to create sustainable, supportive working environments adaptable to the needs of cancer survivors and their caregivers to support this critically important workforce.
- Survivors are seeking integrative solutions:
Integrative oncology emphasizes traditional medical approaches combined with services supporting with the emotional, psychological, and social well being of the patient. Over half of patients surveyed reported seeking practices such as nutrition, mindfulness, and mind body interventions into their life after cancer. At VivorCare we could not agree more - our care model is focused on evidence based lifestyle support combined with world class medical care.
Taken together, the insights gathered by NCCS are a critical reminder of the importance of comprehensive strategies to support the survivorship community across the care continuum.
At VivorCare we are energized by the solutions in the pipeline, and the potential for new models for survivorship care to fill some significant gaps in the current model.
You can find the full results from the publicly-available NCCS State of Survivorship Survey here.