Who Should Be on Your Chronic Graft-Versus-Host Disease Care Team?

If you’re living with chronic graft-versus-host disease (GVHD) — or supporting someone who is — you know this condition rarely affects just one part of the body. When symptoms involve the skin, joints, eyes, lungs, or digestive tract, care typically requires a coordinated team of specialists working together.

“It really takes a village to care for these patients,” says Amin Alousi, MD, hematologist-oncologist and director of the Multi-Discipline Graft-vs.-Host Disease Clinic and Research Program at MD Anderson Cancer Center in Houston. A GVHD care team generally consists of doctors working together at a specialized center, and the number and types of specialists you may need on your team can vary, depending on your changing needs. “GVHD has diverse manifestations, meaning it can present very differently in different patients” says Dr. Alousi.

Medical Pros Who Might Be on Your Team

Specialists who might be on your team include:

Hematologist/Medical Oncologist

GVHD is typically diagnosed and managed by a hematologist/oncologist who has extra training in this area, says Alousi: “Sometimes GVHD signs or symptoms develop while they’re home after surgery, and the local hematologist/oncologist will see the patient, raise the concern for GVHD, and work to start treatment while getting the patient back to their transplant center.”

Dermatologist

Undergoing a transplant ups your risk of skin cancers, which are sometimes quite aggressive, notes Alousi, who recommends a skin check with a dermatologist once a year.

They may also help treat skin tightening as well as hardening, a common symptom that can rarely turn severe.

If a patient develops a blister, for instance, that area of skin can quickly turn from a small abrasion into an ulcer, says Alousi. “When the skin becomes hardened and scarred ... [that] tissue doesn’t heal that well,” he says.

Gastroenterologist

For people with chronic GVHD that affects the gastrointestinal (GI) tract, a gastroenterologist may be recommended. GVHD symptoms can include diarrhea, abdominal pain, and GI bleeding — which, in some cases, leads to severe malnutrition. Another GI problem caused by GVHD is narrowing of the esophagus. “It’s not common, but it’s something we call a stricture,” says Alousi.

Physical and Occupational Therapists

Because steroids can result in muscle weakness, especially when taken in high doses, a physical therapist can become an important member of your chronic GVHD care team. “Often, we’ll proactively have a patient on steroids see a physical therapist to maintain or counteract the effects,” says Alousi. An occupational therapist may also be enlisted to help if you’re having difficulty with daily activities like showering and reaching overhead.

Infectious Disease Specialist

After a transplant, getting screened for infections is especially important. “Patients who undergo a transplant in general — and especially those who have graft-versus-host disease — can be immunocompromised, so infections can happen,” says Alousi. For this reason, an infectious disease specialist, who will diagnose, prevent, and treat infections, is a key member of any care team.

Pulmonologist

It’s also important to have a lung doctor who’s familiar with GVHD. While lung involvement is uncommon, it can occur as bronchiolitis obliterans syndrome, a condition that affects the small airways. “When it happens, it can have profound impact and limit survival, says Alousi. And since it often presents before symptoms show up, it’s generally recommended that patients do a pulmonary function test at regular intervals within the first year and a half to two years after the transplant, he adds.

Gynecologist or Urologist

GVHD can affect the genitals too. “In women, it can cause scarring and narrowing of the vaginal canal, or affect the external genitalia, and similar manifestations can happen in men,” says Alousi. It can also lead to something called genital lichen planus, an inflammatory skin condition that causes itchy, painful, or burning patches and scarring on the vagina, vulva, or penis; scarring can be irreversible and cause sexual dysfunction, notes Alousi. It’s best to see a gynecologist or urologist to stay on top of any issues early.

Ophthalmologist

Dealing with GVHD is layered and can feel daunting. But having a multidisciplinary care team who can work together on your care can make it more manageable. Plus, says Alousi, advancements in treatment and care of GVHD have made it possible for practitioners to provide better care for people with GVHD. “The good news is, especially increasingly in this day and age, these severe manifestations are happening less frequently.” Early diagnosis, reporting any symptoms right away, and getting seen by doctors who are knowledgeable about the disease will help you minimize complications and live more comfortably.

The Takeaway

• Chronic GVHD can affect many parts of the body, including the skin, joints, lungs, eyes, GI tract, and sexual organs.
• A multidisciplinary care team, which may include oncologists, dermatologists, physical therapists, and others, can help catch problems early and manage them before they become more serious.
• Many GVHD-related issues can be treated or prevented when they’re addressed early, making it easier to protect your quality of life and stay as comfortable and functional as possible.