Chronic GVHD Alopecia: A Potential Early Sign of Disease

By Elaine S. DeMeyer, RN, MSN, AOCN®, BMTCN® - Last Updated: May 15, 2023

Because chronic graft-versus-host disease (cGVHD) mimics many autoimmune diseases, patients who received an allogeneic stem cell transplant (SCT) are at risk for developing cGVHD alopecia areata. Alopecia (bald) areata (patchy) is a form of hair loss that occurs when the immune system attacks the hair follicles. In cGVHD, alopecia is caused by the donor T-cells (the graft) attacking the host (patient). Although alopecia changes are insufficient to establish a cGVHD diagnosis, these changes can be potential early indicators of cGVHD. Therefore, it is critical for oncology nurses who care for patients after an allogeneic SCT to know the clinical manifestations, basic definitions, impact on the patient, and some practical tips for dealing with cGVHD alopecia.

What Are the Clinical Manifestations of cGVHD Alopecia?

cGVHD hair involvement can cause a range of changes:

  • Premature graying
  • Thin or brittle hair that breaks easily
  • Scarring and non-scarring scalp alopecia
  • Hair loss over the entire body

Oncology nurses must help to screen and assess for the clinical manifestations of scalp or body hair changes with cGVHD. Ask patients or their caregivers questions about hair changes in addition to conducting a physical assessment.

  1. Inspect the scalp, hair, and body hair for color, consistency, or distribution changes. For example, thinning scalp hair may be patchy, coarse, or lacking shine.
  2. Ask patients if they are experiencing premature gray or thinning hair, hair loss, or an itchy scalp.
  3. Note any eruptions composed of papules and scales.

What Are the Different Types of cGVHD Alopecia?

A dermatologic study conducted at Massachusetts General Hospital of patients with cutaneous cGVHD revealed 4 clinical hair loss patterns: (1) patchy non-scarring alopecia (41%); (2) patchy sclerotic alopecia (6%); (3) diffuse non-scarring alopecia (12%); and (4) diffuse sclerotic alopecia (12%). For oncology nurses, this means that patients can have a range of presentations from partial to complete loss of hair that can be non-scarring or scarring. Knowing the difference between non-scarring and scarring alopecia is critical because it determines if hair loss is temporary or permanent.

  • Non-scarring alopecia: preservation of hair follicles allows for potential hair regrowth.
  • Scarring alopecia: damage of hair follicles is irreversible with fibrous scar tissues leading to permanent hair loss.

For patients in this study, the average duration of persistent scalp hair loss was 32 months (range: 6-87 months), so these changes can persist for years.

What Is the Potential Impact of cGVHD Hair Loss?

Oncology nurses must be aware of the potential impact of cGVHD hair loss. It can be a constant reminder of a physical ailment and contribute to mental health issues such as anxiety, sadness, depression, frustration, distress, or despair. All patients with cGVHD have distress at some point and can have highs and lows when dealing with their chronic illness. Distress screening, often by a social worker, can help to identify various problems: practical, physical, emotional, family, or spiritual problems.

Change in body image because of cGVHD can trigger negative feelings, causing patients to feel unlovable or unworthy, and can affect their relationship with their partner. Oncology nurses must permit patients to discuss their concerns—the “P” in the 4-level PLISSIT model—to assess and manage patients’ sexuality worries. A permission statement might look like this:

“Many patients dealing with hair loss and skin changes with cGVHD have concerns about intimacy. I am available to answer your questions or talk about your concerns.”

Connect patients with appropriate resources by communicating patient needs with the interdisciplinary team.

Practical Tips to Help Patients Deal With cGVHD-Related Alopecia

Although alopecia may not be preventable or reversible, there are some strategies that oncology nurses can share with patients to help minimize or manage hair changes.

  1. Shampoo only 1-2 times per week.
  2. Use baby shampoo and a tub containing deep conditioner (often thicker than a tube).
  3. Try dry shampoo (powder or spray) in between washings.
  4. Consider warm (not hot) oil hair treatments, products, or simple coconut oil.
  5. Do not color hair, if possible.
  6. Avoid blow dryers or curling irons.
  7. Follow scalp sun safety guidelines and wear SPF 50 sunscreen and a wide-rim hat.

Patients may have a wig from previous treatments but may be ready for a new style or color. Wigs can be dyed and re-styled. Contact your oncology social worker to find local resources for wigs, scarves, hats, caps, or beanies. Although often thought for patients with breast cancer, encourage patients to consider the Look Good Feel Better resources. The program offers complementary in-person and virtual sessions to help manage appearance-related side effects of treatment.

Hair changes can be early manifestations of cGVHD, so oncology nurses must include a thorough alopecia assessment. Because cGVHD can last several years, patients may deal with ongoing body image changes such as alopecia. Although there is no proven treatment for cGVHD-related alopecia, oncology nurses can explore practical tips for hair changes and resources to help patients cope.


Screening Scalp/Body Hair for Chronic GVHD

Histologic and Clinical Cross-Sectional Study of Chronic Hair Loss in Patients With Cutaneous Chronic Graft-Versus-Host Disease

Sex Is an Important Dimension of Cancer Psychosocial Care That We Need to Stop Neglecting

PLISSIT Model: Introducing Sexual Health in Clinical Care

Look Good Feel Better