by Mara Klecker
Amid the COVID-19 pandemic, AIM at Melanoma has redoubled its efforts to meet the needs of melanoma patients and their families in ways that patients have specifically requested.
“Last year we sent surveys to our community asking them what types of programming they would like to see us offer,” said Samantha Guild, President of AIM at Melanoma. “And the responses were pretty uniform that there was a gap in programming related to survivorship.”
The surveys revealed that those facing melanoma were looking for more programs aimed at the psychosocial aspects of the cancer journey – they wanted to have conversations, for example, about the emotions that come with scarring, the fear of reoccurrence, and the isolation of facing a cancer that others may not understand. Further surveying indicated these needs became even more pronounced once the COVID-19 pandemic began, because many patients lost the chance to talk through these issues with in-person support groups or over a dinner with friends.
“We knew it was something we had to address, and quickly,” said Guild.
Enter “Beyond the Clinic: Living Well with Melanoma,” a monthly live webinar focused on exploring conversations that don’t often take place in exam rooms. The series kicked off in December, with a webinar that tackled the difficulties of navigating holidays after a melanoma diagnosis, particularly during the additional stress of a pandemic.
AIM enlisted Dr. Raymond Liu, the Director of Cancer Survivorship for Kaiser Permanente San Francisco, to lead the program, which will dive into a variety of topics, including quality of life, dating and intimacy, and supporting children after a cancer diagnosis in the family.
“We spend a lot of time as doctors having to explain complex situations,” Liu said. “There isn’t always time for us to find ways to address these other important parts of survivorship…This [program] allows us to dive deeper into those aspects of their journey.”
Liu said the series will continue to include conversations about how patients can feel or regain some control in parts of their lives, whether that be in their relationships, their careers, or their day-to-day decisions.
“These are critically important topics for melanoma patients,” said Melissa Wilson, PA-C, MPAS, the lead for AIM’s Ask an Expert and also lead physician assistant for the Melanoma Program at UPMC Hillman Cancer Center. “Many people have questions about survivorship. I can now point them to the ‘Beyond the Clinic’ webinars for in-depth answers to these questions.”
All of the webinars will be presented virtually and then released into AIM’s online video library, which ensures that patients and their families can watch at their convenience—either live or on their own time.
The viewing options allow the programming to reach patients at home “because that’s where they are right now,” said Dr. Thach-Giao Truong, the Melanoma Program Lead at Kaiser Permanente Northern California. “Ultimately their lives are with their loved ones, not in the clinic with us. We need to meet them there,” she said, adding that she expects those strategies to continue long after the pandemic ends.
Though the webinars are aimed at melanoma patients and their friends and family, the topics are often relevant for those facing other types of cancers. Dr. Truong sees the webinar model expanding to other pockets of the cancer community.
“I do think this is a resource that will serve a great purpose beyond melanoma and beyond the pandemic,” she said.
Liu agreed and said he is encouraged by the early success of the program.
“We are coming together as a community in ways we haven’t before,” he said. “This is about going beyond talk of new drugs and creating a truly comprehensive program for patients.”
REGISTER for the January 13th webinar.