Experiences of Melanoma Patients and Caregivers
By: Marni Amsellem, Ph.D., Clinical Psychologist and Research Consultant to CSC
The Cancer Support Community constantly strives to better understand the experiences of patients and caregivers to best meet their needs. Often we conduct in-depth surveys on specific concerns or cancer diagnoses when we are considering adding or modifying programs. This past spring, we conducted such a survey of individuals (both patients and caregivers) affected by melanoma. We, along with partner organizations, conducted an online survey of 140 individuals diagnosed with melanoma and 64 caregivers assessing experiences, beliefs, attitudes, preferences for information and support. The recently-released results from this survey are informing the development of new programming and CSC’s Frankly Speaking About Melanoma educational program.
This survey is unique in both breadth and depth in coverage of melanoma-related topics, including patient-provider communication, information-seeking, values, preferences, attitudes, and beliefs. The inclusion of caregiver responses in this survey provides another essential viewpoint. Given the influence that caregivers can have in both the treatment decision-making and the care of cancer patients, the data provided by this survey addresses a significant informational void.
Here are some key findings from the survey:
- There were many cancer-related or treatment-related side effects. Over half of patients reported experiencing anxiety, depression, pain, and fatigue as a result of their melanoma.
- Only half were asked about cancer-related distress by their healthcare teams.
- Over half wish they would have received more help with managing emotions related to cancer, managing long-term side effects, working on changing lifestyle behaviors, managing fear of recurrence or understanding risks of melanoma recurrence, or assistance with creating a survivorship care plan.
- Over half of caregivers strongly identified with being a cancer caregiver; over one third were providing care to their spouses or partners.
- The most common source of information for caregivers was the internet.
- Cancer-related distress was also notable among caregivers, with nearly one third reporting symptoms of anxiety or depression. One in ten caregivers was provided with resources to manage cancer-related distress by a healthcare professional.
These and additional findings were presented last month at a national conference for nurse navigators and we are pleased to announce that this research has been awarded first prize for Exceptional Poster in the Patient Education category. Additional results from this survey are available to the public on our website, as are CSC-produced melanoma resources.