By Sarah Garcia - October 04, 2020
For anyone diagnosed with cancer, the experience can be frightening and full of unknowns. That fear can be magnified even more for Adolescent and Young Adult (AYA) patients, who often face unique challenges — including cancer treatment’s impact on fertility and reproductive and sexual health.
All patients, including those in the AYA population, should be informed about the potential implications of treatment on their future fertility, according to Dr. Susan Vadaparampil, associate center director of Community Outreach, Engagement and Equity at Moffitt Cancer Center.
“Organizations like the American Society of Clinical Oncology recommend that every patient of childbearing age who is starting cancer treatment receive this information,” said Vadaparampil. “What we found was that even though those guidelines were in place, that was a far cry from patients actually receiving that information.”
Based on this observation, Vadaparampil and her colleague Dr. Gwendolyn Quinn set out to create a program to tackle the issue.
“We realized providers were instrumental in taking this guideline and really bringing it to the patients who need to hear this information the most,” she said.
The team applied for an R25 grant through the National Cancer Institute’s Cancer Research Education Grants Program, which is designed to support educational activities that complement the training of a workforce to meet the nation’s biomedical, behavioral and clinical research needs.
Originally launched as ENRICH (Educating Nurses about Reproductive Issues in Cancer Healthcare), the web-based program was used to train only oncology nurses in its first five years. About 250 nurses from across the U.S. participated in the training, learning about the impact of cancer on fertility and building communication skills.
“It’s one thing to give people the information, it’s another to help them feel comfortable having these discussions,” said Vadaparampil. “Over those five years we learned a lot about what strategies were most effective for training.”
"It’s one thing to give people the information, it’s another to help them feel comfortable having these discussions."- Dr. Susan Vadaparampil, associate center director of Community Outreach, Engagement and Equity at Moffitt Cancer Center
Based on the success of the first five years of ENRICH, Vadaparampil and team applied for and received a renewal application to launch a successor program called ECHO, or Enriching Communication Skills for Health Professionals in Oncofertility. ECHO, which is in its fourth year, trains not only nurses, but also physician assistants, psychologists and social workers.
The team also expanded the topics covered in the training program — which initially focused on fertility preservation and the impact of the cancer treatment on your fertility — to include quality of life, sexual health and contraception.
“We heard very loud and clear from the oncology nurses who participated in the prior training that this conversation doesn’t happen in isolation from the larger social context that an AYA patient is going through,” said Vadaparampil. “Social relationships, body image and family are often at the forefront of patients’ minds when thinking about the impact of treatment on fertility.”
Nearly 500 participants from 47 states and six countries have completed the ECHO training. The program places an emphasis on selecting diverse participants and those who work in diverse communities and settings. The team has also secured additional funding to specifically look at how it can adapt the training for AYA patients who are LGBTQ+.
Vadaparampil and her team are also using their large network of trainees to evaluate the program’s success and improve future training.
“With research, one of the challenges is that it often takes so long to see the other side. This program has a little bit more instant gratification because we get a lot of love and kudos from our trainees,” said Vadaparampil. “We continue to see examples of how this training has helped drive a series of events at another center or another practice based on people being empowered with the right information and communication skills.”
The eight-week, web-based program is free and open to anyone who is a psychologist or counselor, social worker, nurse or advanced practice professional who works with cancer patients ages 15 to 45. The program runs from January through March each year. Interested learners should submit their application on the ECHO website. Applications for the 2021 program are due Nov. 1, 2020.