When diagnosed with cancer, it’s natural for a patient to focus on the physical treatments – surgery, radiation, chemotherapy – needed to beat the disease. But the emotional and mental health dimensions of a cancer diagnosis can be overlooked – feelings of anxiety, depression, loss, isolation, anger and more can interplay with illness, exacerbating a stressful and difficult time in a person’s life. This is especially true for young adults with cancer. Young adulthood is the most likely time for the onset of mental health difficulties, and it can be challenging for young people to identify and express the complex emotions that come with cancer.
As a psychologist at Brigham and Women’s Hospital and the Dana-Farber Cancer Institute, Karen Fasciano, PsyD, has been a part of medical teams that treat young adults with cancer for more than 20 years. She knows the psychological toll that grappling with a life-threatening illness and its treatment can have on young adults who are establishing their careers, families and life goals. “Many young patients find their lives on hold,” said Fasciano. “Overwhelming changes related to cancer bring unfamiliar and intense emotions. I wanted to address the emotional aspects of being sick for young patients.”
Fasciano’s team has worked with collaborators to help young adults with cancer build a sense of community and develop coping skills in a non-traditional way: through a smartphone app specifically designed to address the emotional needs of young adults coping with cancer, built with input and feedback from patients.
Developing Emotional Coping Skills through Mobile Technology
The app, called iaya, is set to launch in late summer and will be made available to young adults being treated at the Dana-Farber/Brigham and Women’s Cancer Center (DFBWCC). Fasciano, the program director of the Young Adult Program, and her team have been working with the Brigham Digital Innovation Hub (iHub) over the last two years to help turn the idea into a reality. The iHub team recommended soliciting and incorporating input from patients early in the app’s development.
Fasciano’s team, including clinical social worker Katelyn MacDougall, LICSW, of DFCI, and program manager Paige Malinowski of DFCI, began to implement iHub’s strategic plan. The iHub team helped MacDougall facilitate patient focus groups to guide the development of the app to meet the needs of its target audience. iHub also helped connect the team with HT Developers, a health care design and software development agency, to build the app. MacDougall played an essential role in developing clinical content for the app, while research fellow Hanneke Poort, PhD, of Dana-Farber, shaped the research strategy vision. Malinowski provided project management support, including recruiting current and former DFBWCC young adult cancer patients through the Young Adult Program, which offers behavioral health services – including behavioral-related coping skills and emotional counseling – for patients 18 to 39 years old.
Michael Melia is one of the patients who participated in the focus groups for iaya. Melia was diagnosed with testicular cancer in 2015 just after he turned 30. He received treatment at DFBWCC for about a year. While receiving infusions, Melia recalls looking around the floor and realizing he was the youngest patient by decades.
“I remember thinking how much I wished I could connect with other people my age. I had my friends and family, but they weren’t going through chemo – it can be very lonely for young adults,” said Melia.
The Young Adult Program (YAP) was a major resource for Melia during treatment. After his scans were clear, Melia reached out to Malinowski and colleagues to ask what he could do to be a resource for the program. When he heard they were looking for patient input on the app, Melia volunteered to attend in-person meetings with iHub, the YAP team, HT Developers and other DFBWCC patients.
“There were lots of voices in the room and we could bounce ideas off each other. It was such a collaborative environment and you could see ideas for the app change and take shape,” he said. “The app teaches coping skills to deal with the emotions – anxiety, sadness, fear – that come with cancer. It is something I would have used when I felt overwhelmed.”
A Sneak Peek of iaya
At a recent meeting, Fasciano’s team presented slides showing what users will see when they open iaya.
Upon opening the app, users will land on a homepage which will engage them in one of three ways. First, they can contribute to a community question, which will connect them to other app users with similar interests, questions and concerns. For example, the welcome page might contain a question such as, “What do you value most?” or “What are you most grateful for today?” A summary of how other users have answered that question will appear and serve as a reference and educational/ inspirational tool for app peers.
Next they will see suggestions for coping exercises to explore further. And finally, they will see the most popular posts from a community feed where peers have posted results from coping exercises, suggestions about young adult cancer specific resources or personal comments. A community feed will contain suggested coping strategies and exercises for the user to try.
The coping strategies featured in the app are from evidence-based therapies used in clinics to help treat people with anxiety and mood difficulties, as well as strategies that help facilitate emotional resilience. Fasciano and MacDougall wanted to include a range of coping techniques, including methods from cognitive behavioral therapy, acceptance and commitment therapy, mindfulness and positive psychology. The coping strategies will include educational information and an active exercise to practice the strategy. The active exercise will allow the user the option of generating an output to share on the community feed.
“Each person has unique emotional coping needs,” says Fasciano. “We have tried to put as many coping and communicating strategies together as we can so that everyone will find strategies in the app that work for them.”
Fostering a Community
The team will launch iaya a BWH/DFCI initiative, introducing it to 1,200 young adult cancer patients at DFBWCC. Based on feedback from patients, Fasciano and her colleagues designed the app to target this local population to help build a community.
Fasciano anticipates that some users will post on their feed when they are at the DFBWCC and connect with other community members to meet in person. The app will also allow users to directly connect with one another using instant messaging. For other users, a more passive engagement, such as reading other users’ posts, will meet their desire to feel part of a community.
While the app is designed to connect a small community, there is no limit on how many different small communities could be developed.
“There is potential for iaya to be expanded in the future,” says Brian Mullen, PhD, manager of Innovation Strategy at BWH iHub and a key iaya team member. “We could roll out iaya across different hospitals or geographical regions. We can adapt the technology that we have developed to target different cancer populations, such as those with prostate cancer or breast cancer. And there’s nothing limiting us to cancer; with small tweaks, we could target many other illnesses such as HIV or cardiac disease going forward.”