Q&A: Education, advocacy critical for young adults with IBD ‘to thrive’
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Adolescents and young adults with inflammatory bowel diseases are a growing demographic with more than 25% of patients diagnosed before age 16, according to research published in Inflammatory Bowel Diseases.
However, with this burgeoning group of young patients comes the urgent need to ensure adequate care and quality of life are maintained as they transition from pediatric care to adult care model.
“In surveys of gastroenterologists about their perception of health care transition in IBD, lack of training of adult providers in adolescent medicine is outlined as a major issue in providing care for young adults post-transition,” Itishree Trivedi, MD, MS, gastroenterologist at UI Health, and colleagues wrote in Gastroenterology Research and Practice. “This perceived need for additional health provider training to deal with the unique issues of young adults is echoed in other chronic disease models like rheumatologic diseases and congenital heart diseases.”
Additional research has also shown younger-onset IBD correlated with a more severe disease course as well as playing a larger role in poor mental health and social functioning.
The transition from pediatric to adult care can be a challenging process for many adolescents with IBD, especially as the burden of disease management may clash with typical developmental changes, such as gaining independence, new social relationships and achieving educational or vocational milestones.
During this critical juncture, adolescents need to know they are not alone; it is a need that Generation Patient, a nonprofit that works to connect and empower young adults with chronic and rare conditions through meetings and online programs, is working to fill.
Healio spoke with Sneha Dave, executive director and founder of Generation Patient and one of its key programs, the Crohn’s and Colitis Young Adults Network (CCYAN), about the importance of empowering young adult patients with IBD, new initiatives to increase support and advocacy for this patient demographic and how both patients and providers can get involved.
Healio: What is the Crohn’s and Colitis Young Adults Network?
Dave: CCYAN was the first organization I created as a freshman in high school. When I was six years old, I was diagnosed with ulcerative colitis, and later underwent colectomy surgery. I realized that there was not a lot of support and advocacy for adolescents and young adults with chronic conditions, and specifically, IBD. I wanted to find a way to create more of a support system for this demographic, promoting the different developmental milestones that we are experiencing in addition to having a chronic illness.
In the beginning, CCYAN was just a newsletter called ‘The Crohn’s and Colitis Teen Times’, which my late best friend, Cory Lane, and I created and distributed throughout Indiana. As websites and online platforms become more popular, we grew into a fellowship program for young adults with IBD.
We are now entering the fifth year of our fellowship program, which includes eight to nine fellows with IBD each year who produce monthly content for our website, listen to speakers and receive a small stipend. In the past couple years, we have also partnered with Advances in IBD to have young adult patients in the room not only advocating for what is important to us, but also learning about upcoming research to disseminate that to our global audience of young adult patients with IBD.
Our first major funder was the Helmsley Charitable Trust, and their support has enabled us to grow our programming significantly to reach more of the next generation of IBD patients.
Healio: What is Generation Patient and how has that grown from CCYAN over time?
Dave: Formerly known as the Health Advocacy Summit, Generation Patient brings all our programs under one umbrella. CCYAN is now a program through Generation Patient and the only disease-specific programming at Generation Patient.
Our first summit was held in 2017 in Indiana for young adults with various chronic conditions from lupus to arthritis, Lyme disease and, of course, IBD. Though these conditions are biologically and medically unique, many of the societal challenges, such as higher education, employment, identity and financial independence, are the same. Thinking about how we can bring together different disease groups to advocate for our age demographic is important.
Prior to the pandemic, we had facilitated seven in-person summits and coordinated two international virtual summits during the pandemic. We are now preparing for our third summit later this month (Sept. 29-Oct. 1, 2022), which will bring together a global audience of approximately 300 to 350 young adult patients covering a variety of topics ranging from entrepreneurship with a chronic illness, body image and mental health that remain poorly addressed within the health care system.
In addition to the summit, we host seven peer support meetings each month, which are great mechanisms for sustained support and reduced isolation. We also do a lot of work in higher education; specifically, we just held our Roundtable on Medical Disabilities and Higher Education in February where we published a proceedings document highlighting the unique learning and socioemotional needs of chronically ill students entering into these the higher education system where resources and accommodations may be lacking.
Healio: What is Generation Patient’s mission statement?
Dave: As a whole, we seek to empower and connect young adults with chronic and rare conditions from around the world from an intersectional lens. Generation Patient focuses on peer connection, advocacy and access to educational information and resources as fundamental pathways to empowerment.
We have never really been about ‘finding a cure’ because there is so much more that we need to be able to thrive while we are waiting for a cure that could be decades away. It's about being able to learn how to navigate the symptoms that is really important.
Healio: What new initiatives should young adults with chronic conditions and their providers be on the lookout for?
Dave: Coming up for CCYAN, we have our Roundtable on Young Adults with IBD which is going to start in February 2023. We are hoping to bring together both patients and providers in a safe space to share best practices and the pressing needs of where research should be focused. There is so much value in bringing patients and health care professionals into a room to discuss these topics because we have felt that there is a huge disconnect on each side. From here, we plan to create publications to promote advocacy issues and removing barriers that we encounter entering adulthood with a chronic condition.
Some of the topics we address will include young adults with intellectual and developmental disabilities and IBD who are transitioning into adult care, as well as medical trauma and adverse childhood experiences.
We are also piloting our first year of the IBD Medical Students Scholars Program – open to all medical students with an interest in IBD regardless of health status – which will promote the young adult IBD patient perspective within the training programs medical students go through. Targeting medical students may give us the early opportunity to promote interest in this age demographic where potential research could be done.
Our medical advisory board, which includes Eric Benchimol, MD, Sandra Kim, MD, Manasi Agrawal, MD, MS, Maia Kayal, MD, and Miguel Regueiro, MD, have also been instrumental in providing advice and guidance. We are grateful that both of these new programs have been made possible by the continued support of the Helmsley Charitable Trust.
Healio: What does the future of CCYAN and Generation Patient look like?
Dave: We will continue to provide direct peer support while also ensuring that systems are held accountable to our community of patients, whether in regard to issues of drug affordability, clinical trials, higher education or the workplace.
There is so much to address for the young adult patient demographic. For example, in areas of regulatory policy, young adults have been ignored as a separate demographic within clinical research and adverse event reporting. Given that we are one of the very few organizations focused on young adult patients, we hope to provide this perspective in many different areas.
Healio: How can other young adults with IBD and physicians get involved?
Dave: The best way would be to subscribe to our newsletter where we are going to be posting registration and updating our speaker faculty. Applications for our fellowship program for young adults with IBD and our program for medical students are also open now to the global audience.
We are also always looking for ways to partner with physicians to create more robust research that includes patients at the forefront.
I also encourage checking out our “Diversify IBD Patient Engagement” list of past/present CCYAN fellows who continue to do meaningful patient advocacy in their communities.
For more information visit generationpatient.org, ccyanetwork.org or reach out directly at admin@ccyanetwork.org.
Reference:
Chaparro M, et al. Aliment Pharmacol Thera. 2019;doi;10.1111/apt.15114.
Goodhand J, et al. Inflammatory Bowel Diseases. 2010;doi:10.1002/ibd.21145.
Qualiter P, et al. Quality of Life Research. 2021;doi:10.1007/s11136-020-02653-9.
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