Chronic GVHD: Building Your Multidisciplinary Care Team

Navigating chronic graft-versus-host disease (GVHD) often requires a collaborative approach to care, involving a team of medical specialists. What we have is because GVHD, a complication that can occur after allogeneic stem cell transplantation, rarely confines itself to a single system within the body. Symptoms can manifest in the skin, joints, eyes, lungs, or digestive tract, necessitating a coordinated effort to manage the condition effectively.

More than 80 percent of individuals living with chronic GVHD report working with a diverse team of specialists, highlighting the complexity of managing this condition. “It really takes a village to care for these patients,” explains 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. The composition of this care team can vary significantly depending on the individual patient’s specific needs and how GVHD presents itself. “GVHD has diverse manifestations, meaning it can present very differently in different patients,” Dr. Alousi notes.

Who Makes Up the GVHD Care Team?

A comprehensive GVHD care team typically includes several key medical professionals, each bringing specialized expertise to address different aspects of the disease. Here’s a closer look at the roles these specialists play:

Hematologist/Medical Oncologist: The Core of GVHD Management

The diagnosis and ongoing management of GVHD are generally overseen by a hematologist/oncologist with specialized training in this area. These physicians are often the first point of contact when GVHD symptoms arise, even after a patient has returned home following transplantation. They can initiate treatment and coordinate further care with other specialists.

Dermatologist: Addressing Skin Complications and Cancer Risk

Transplant recipients face an increased risk of developing skin cancers, some of which can be aggressive. Regular skin checks with a dermatologist – ideally annually – are recommended. Beyond cancer screening, dermatologists can as well address common GVHD-related skin issues like skin tightening and hardening, which can lead to ulceration if not properly managed. “When the skin becomes hardened and scarred … [that] tissue doesn’t heal that well,” Dr. Alousi explains.

Gastroenterologist: Managing Digestive Tract Involvement

Chronic GVHD frequently affects the gastrointestinal (GI) tract, leading to symptoms such as diarrhea, abdominal pain and even GI bleeding, potentially resulting in severe malnutrition. Gastroenterologists can diagnose and treat these complications, including esophageal strictures – a narrowing of the esophagus that, whereas uncommon, can occur in GVHD patients.

Physical and Occupational Therapists: Counteracting Treatment Side Effects and Maintaining Function

Steroids, often used to treat GVHD, can cause muscle weakness. A physical therapist can help patients maintain strength and counteract these effects. Occupational therapists can assist with daily activities that become challenging due to GVHD, such as showering or reaching overhead. Proactive involvement of these therapists can significantly improve a patient’s quality of life.

Infectious Disease Specialist: Protecting Against Infections

Following a transplant, and particularly with GVHD, patients are often immunocompromised, making them more susceptible to infections. An infectious disease specialist plays a crucial role in diagnosing, preventing, and treating these infections, ensuring prompt and appropriate care.

Pulmonologist: Addressing Lung Involvement

While less common, GVHD can affect the lungs, leading to bronchiolitis obliterans syndrome, a condition that impacts the small airways. This can have a profound impact on a patient’s health and survival. Regular pulmonary function tests, particularly within the first year and a half after transplant, are recommended to detect lung involvement early.

Gynecologist or Urologist: Managing Genital Complications

GVHD can also manifest in the genital area, causing scarring and narrowing of the vaginal canal in women, or similar issues in men. It can also lead to genital lichen planus, an inflammatory skin condition causing discomfort and potential scarring. Early consultation with a gynecologist or urologist is essential to address these issues and prevent long-term complications.

Ophthalmologist: Protecting Vision and Quality of Life

Eye symptoms are common in GVHD, affecting approximately 40 to 90 percent of patients. GVHD can cause keratoconjunctivitis, leading to decreased tear production and significant eye dryness, impacting both vision and quality of life. Regular screening by an ophthalmologist is vital to prevent irreversible eye damage.

The Evolving Landscape of GVHD Treatment

Dealing with GVHD can be complex and overwhelming. Still, advancements in treatment and care are continually improving outcomes for patients. “The excellent news is, especially increasingly in this day and age, these severe manifestations are happening less frequently,” says Dr. Alousi. Early diagnosis, prompt reporting of any recent or worsening symptoms, and access to a knowledgeable care team are key to minimizing complications and maximizing comfort and functionality.

The importance of a multidisciplinary approach cannot be overstated. A team of specialists working together can effectively address the diverse manifestations of GVHD, leading to better management and improved quality of life for those affected.

What to Do If You Suspect GVHD

If you or a loved one is experiencing symptoms potentially related to GVHD, it’s crucial to communicate these concerns to your healthcare team immediately. Don’t hesitate to inquire questions and advocate for a thorough evaluation. Early intervention is often the key to preventing complications and maintaining the best possible outcome. You can discover more information about GVHD and available resources through organizations like BMT InfoNet and Everyday Health.

Staying Informed and Proactive

• 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.