Trading One Disease for Another: Patients With Chronic Graft-vs-Host Disease May Face Lifelong Complications

A Conversation With Katie Schoeppner, MSW, LICSW; Susan K. Stewart; and Meredith Cowden, MA, LPCC-S

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The field of allogeneic stem cell transplantation continues to improve survival for patients with previously incurable blood cancers. However, up to 50% of patients who undergo transplantation with donor cells will develop chronic graft-vs-host disease, a potentially deadly condition that can also cause lifelong complications.

The ASCO Post spoke with Katie Schoeppner, MSW, LICSW, Director of Patient Services at the National Marrow Donor Program (NMDP); Susan K. ­Stewart, Executive Director, BMT InfoNet; and Meredith Cowden, MA, LPCC-S, of the Meredith A. Cowden Foundation, about the many challenges faced by patients who develop this disease, available resources for the oncology community, and key takeaways from the recent National Institutes of Health (NIH) Chronic GvHD Consensus Conference.

Katie Schoeppner, MSW, LICSW

Katie Schoeppner, MSW, LICSW

Susan K. ­Stewart

Susan K. ­Stewart

Meredith Cowden, MA, LPCC-S

Meredith Cowden, MA, LPCC-S

Physical, Mental, and Financial Challenges

Although patients undergoing transplantation are often told in advance that they may develop graft-vs-host disease, according to Ms. Stewart, they are so focused on staying alive while undergoing transplantation that few are able to process the potential realities of the condition, which can affect a number of different organs and body systems. Graft-vs-host disease is most commonly associated with painful irritation of the skin, eyes, and mouth, but it can also affect the lungs, joints, gastrointestinal tract, and genitourinary tract.

“Eye drops and goggles may ease some of the ocular symptoms, but many patients are unable to go outside because the bright light is too excruciating,” said Ms. Stewart.

In addition, sexual relations between couples may change due to physical discomfort with intercourse or body-image issues. There also are severe emotional challenges such as mood swings, particularly for those on corticosteroids.

According to Ms. Cowden, the psychological issues associated with graft-vs-host disease may be just as debilitating as the physical symptoms. “The cognitive impairment associated with the disease is not discussed nearly as much, but it’s a very real problem,” she explained. “Many people also experience depression, anxiety, and suicidal thoughts, and some develop post-traumatic stress disorder because of it.”

The condition can be financially crippling as well. A recent survey of graft-vs-host disease survivors conducted by Ms. Stewart and colleagues showed that approximately 20% were unable to return to their job and a similar percentage could not find new work. When combined with insurance barriers, high out-of-pocket costs for clinic visits and medications, and the time spent seeking the right specialists, the burden on patients can be overwhelming, Ms. Schoeppner added.

“Transplant was offered as a cure for a devastating diagnosis such as leukemia or lymphoma—and hopefully it worked,” said Ms. Schoeppner. “For those who end up developing chronic graft-vs-host disease, however, instead of being back to normal after transplant, they’re living with a debilitating disease.”

Improving Patient Education

According to Ms. Schoeppner, one of the biggest challenges faced by providers is how to educate patients before transplant about graft-vs-host-disease when they may not be in a place to properly receive or understand the information. “Patients are grappling with their diagnosis, the progression of their cancer, and the need for transplant,” said Ms. Schoeppner. “We want them to make an informed decision and be aware of what could happen, but this is a complex disease that even the brightest minds in transplantation don’t completely understand.”

Providing “very clear and accessible” educational materials about graft-vs-host-disease that integrate different learning styles could help patients retain this vital information, said Ms. Schoeppner. She noted that the NMDP offers educational resources in a variety of different formats.

Ms. Stewart, who founded BMT InfoNet in 1990 after a bone marrow transplant for acute myeloid leukemia with the purpose of providing reliable and factual information about transplants, wrote a book specifically for patients with graft-vs-host-disease. Graft-vs-Host Disease: What to Know, What to Do offers tips for managing various symptoms, from common skin conditions to rarer gynecologic and musculoskeletal issues.

Psychosocial Support

BMT InfoNet provides a number of emotional support services as well. One program called “Caring Connections” matches patients undergoing transplantation or dealing with graft-vs-host-disease with a survivor who has dealt with similar symptoms. “A lot of people are not prepared to live with a chronic disease after transplantation, and it can be emotionally debilitating,” said Ms. Stewart. “These connections can give people the sense that there’s somebody out there who understands what they’re going through—and that they can emerge on the other side.”

The NMDP also has a peer-connect program consisting of 150 volunteers who have been through transplantation as either a patient or a caregiver. These volunteers, who are all at least 1 year removed from transplantation, are available to talk to patients who are struggling in their own post-transplant recovery or with graft-vs-host disease.

“Sometimes, by simply sharing their experience, they can help patients feel less isolated,” said Ms. Schoeppner. “Plus, they tend to have really practical tips. Some of the best advice regarding symptom management comes from other patients who’ve dealt with graft-vs-host disease.”

In addition to education and emotional support, Ms. Schoeppner emphasized the importance of mental health resources tailored to the transplant population. The NMDP helps connect patients with social workers, therapists, and psychologists who understand the severity of this disease.

"Some of the best advice regarding symptom management comes from other patients who’ve dealt with graft-vs-host disease.”
— Katie Schoeppner, MSW, LICSW

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“Of course, there are therapists who can get quickly up to speed and provide great support, but I think the most valuable mental health support for patients is provided through the lens of bone marrow transplant and graft-vs-host-disease,” said Ms. Schoeppner.

The NMDP offers a counseling services program with two full-time licensed clinical social workers on staff and has continued to support patients during the COVID-19 pandemic with phone and video conferencing. This structured program involves weekly 50-minute sessions focused on coping skills to help patients adjust to life with graft-vs-host-disease.

Helping Community Oncologists

Patients are not the only ones who require educational resources. According to Ms. Stewart, community oncologists need to educate themselves about the signs and symptoms of graft-vs-host-disease, because catching it early—and working closely with transplant centers to manage patients—can be crucial to treating it properly. “Clinicians need to be aware that they don’t have to treat this disease by themselves,” said Ms. Stewart. “By partnering with groups like BMT InfoNet, they can provide more robust palliative care for patients.”

In addition to their patient-directed materials, for example, the NMDP offers resources for physicians, including guidelines related to post-transplant follow-up and symptom management.

Ms. Cowden reiterated the need for more specialized training in the community setting. “Community oncologists and primary care physicians don’t always have the information they need to treat patients with graft-vs-host-disease effectively,” she said. To help bridge that knowledge gap, Ms. Cowden’s family foundation hosts an annual symposium to bring physicians, patients, and caregivers together to share strategies on how best to manage this disease.

“Everybody can learn from each other,” commented Ms. Cowden. “Researchers and clinicians may be experts in medicine, but patients are experts of their own bodies and their day-to-day realities. By connecting health-care providers and patients, I believe we can improve the quality of care.”

NIH Chronic GvHD Consensus ­Conference: Key Takeaways

In November 2020, the National Institutes of Health (NIH) hosted the third consensus conference on graft-vs-host disease (the first was held in 2004); it included approximately 100 contributing experts from the international transplant community. Although the first two meetings were focused on developing guidelines and establishing a standard of care, said Ms. Cowden, this year’s meeting was about refinement of those standards as well as developing prevention strategies.

“If graft-vs-host disease can ultimately be preventable, it’s the best of all worlds,” said Ms. Cowden. “This conference helped to start that conversation while looking at ways to manage the morbid manifestations of the disease in a more effective way. If we can’t prevent this disease, we need to find a way to catch it early enough, so it doesn’t cause such long-lasting, detrimental effects,” she added.

While encouraged by the variety of resources and support available for patients, Ms. Schoeppner noted that mechanisms of disseminating information can be improved. “It’s disheartening that certain resources, such as our clinical trials program for example, are not reaching enough patients,” said Ms. Schoeppner. “We need to find a way to corral all of the information that’s available and make it easily accessible to both patients and providers, particularly those in the community setting, who tend to be less connected to the transplantation world. I’m hoping this conference will be a launching pad for more good things to come.”

Finally, Ms. Stewart highlighted the potential for personalized medicine to identify individual risk factors for developing severe graft-vs-host disease and, one day, intervene with targeted therapies. Despite the progress being made, however, the urgency to bring these biomarkers and novel agents into the clinic today is very real.

“I represent patients, but we are not a very patient crowd,” said Ms. Stewart. “Ten years is a long time to wait for a therapy. We’re hoping that researchers will develop these strategies a little faster to help our patients who are struggling with this truly debilitating disease.” 

DISCLOSURE: Ms. Schoeppner, Ms. Stewart, and Ms. Cowden reported no conflicts of interest.