NCCN Publishes New Guidebook for Patients at Risk of GVHD

Graft-versus-host disease (GVHD) is common, yet it is poorly understood and its symptoms can be difficult to recognize.

The National Comprehensive Cancer Network (NCCN) has published a new resource designed to help patients better understand and manage the risk of graft-versus-host disease (GVHD) following stem cell transplantation.

Patients can access the new guidelines online or through the NCCN’s smartphone app. In addition to the new GVHD resource, patients can also access more than 60 additional guidebooks.

The guide was released a month after the FDA approved the first drug to prevent the condition (abatacept; Orencia) acute GVHD.

Susan Stewart, executive director of the bone marrow transplant patient advocacy group BMT InfoNet, said patient education is an important component of treating patients who undergo transplants.

“GVHD is a transplant complication that comes as a surprise for many patients,” said Stewart in a statement. “It can significantly impact a patient’s quality of life, particularly if it persists long-term. Knowing the symptoms, so that it can be caught early—as well as potential treatment options—is crucial for GVHD patients.”

GVHD—in which a donor’s transplanted cells attack the healthy cells of the recipient—is common in patients undergoing hematopoietic stem cell transplantation to treat blood cancers. As many as half of patients who undergo HSCT will experience acute GVHD, even if the donor is human leukocyte antigen (HLA)-matched, such as a sibling. Rates are even higher among patients who are not perfectly matched with their donors. In addition to the acute form of the disease, many patients also suffer from a chronic form of the disorder.

Ayman A. Saad, MD, of Ohio State University, said in the statement that patient education is particularly important because the symptoms and timing of GVHD can vary widely.

“The symptoms can be very tricky and manifest suddenly, in unusual ways, sometimes years after the transplant,” said Saad, who chairs the NCCN’s guidelines panel for hematopoietic cell transplantation. “The NCCN Guidelines for Patients: GVHD clearly explains this complicated process and hopefully helps people understand the variety of therapies that can be used to treat it.”

Many of the symptoms of GVHD may appear to be relatively minor, raising the concern that some patients will not mention them to their physicians. Common symptoms range from fatigue, jaundice, and diarrhea to rash, dry eyes, and joint stiffness.

Alison W. Loren, MD, MSCE, of the University of Pennsylvania, said the “most important advice for patients is not to panic.” While GVHD can be fatal in rare cases, many cases are reversible if they are caught early.

Loren noted that while steroids have long been the primary treatment option for patients with GVHD, new treatment options have become available thanks to recent clinical trials.

She said patient participation in trials is essential to improving care for GVHD and for the cancers that make the treatment necessary.

“NCCN believes that the best management of any patient with cancer is a clinical trial,” Loren said. “Some trials require that patients haven’t received any previous treatment, so it’s important to bring it up right away and not miss the opportunity for the best possible care while also adding to our knowledge about how the immune system works.”

Loren said she hopes the new guidebook helps bring clarity to what can be a confusing and stressful situation.

“GVHD is very common yet poorly understood, even by physicians,” she said. “Hopefully, this book brings some order to the chaos by sharing evidence and uniformity. Treatment guidelines, if used effectively, will limit the severity and duration of people suffering from GVHD.”