Survivorship Final Report Summary FINAL

Survivorship Needs Assessment and Environmental Scan:

Highlights for the Melanoma Community

The Melanoma Research Foundation (MRF) commissioned Crescendo Consulting, LLC to conduct a Survivorship needs assessment, literature review and environmental scan from October 2019 - January 2020. The primary research included a focus group (12 participants), one-on-one interviews (16 participants) and an online survey (881 participants). Melanoma patients, survivors and caregivers were recruited, as well as stakeholders from the MRF Breakthrough Consortium member centers and MRF Scientific Advisory Committee members. Below are some key highlights, findings and comments from the final report:

The MRF defines survivorship at the point of diagnosis . • Approximately 75% of survey respondents identified as melanoma survivors. Those who did not consider themselves a survivor were either still in active treatment or were diagnosed with In-situ or Stage I melanoma.

“I attended a women’s cancer support group one time. Almost all the participants were battling breast cancer. Since I didn’t look like them, I wasn’t invited back. I would love a melanoma-specific support group.”

Key demographics of survey respondents • 53% were between the ages of 40-64 • 69% were women • 42% have participated in a clinical trial

Key challenges of survey respondents • Many patients reported struggling with the transition of oncology care back to their primary care providers • Many providers do not understand the unique side effects of immunotherapy • Many respondents reported experiencing problems with depression, anxiety, and worry •

“Early stage survivors with good recovery and no recurrence don't have high needs. They don’t think about it. The other group are advanced stage. Here melanoma treatment has been revolutionized. Another bifurcation is in the populations seen: it is often older men and younger women. The latter are at the height of their work lives; starting families and gearing up in life with different needs than the men.”

Major side effects that melanoma survivors must consider often occur include autoimmune disease, rheumatology, lymphedema, endocrinopathies, gastrointestinal issues and fatigue

Key concerns for patients •

Depression is a major concern for patients at all stages • Those with a later Stage III or IV diagnosis tended to have a loss of interest in usual activities when compared to early stage diagnosis • Fear of melanoma recurrence was reported between 80- 90% for patients diagnosed with any stage • “Survivors guilt” was felt by nearly 70% of all patients diagnosed with any stage

Patient/caregiver needs to be addressed • Over 90% of survey respondents would like an in-person support group specific to melanoma survivorship • There is a clear unmet need for melanoma-specific survivorship programs to be developed • Wellness, exercise and nutrition are major focus areas of existing survivorship programs and should be considered for melanoma survivorship programs

The MRF’s Survivorship efforts are supported by: