For many patients with chronic graft-versus-host disease (cGVHD) after allogeneic stem cell transplant (SCT), cGVHD is ongoing with occasional episodic flares. Like other severe chronic illnesses, cGVHD can change people’s lives—even affecting their emotional well-being. Common symptoms, such as excessive fatigue, lack of sleep, or uncertainty of flares, can limit the person’s ability to plan or participate in meaningful activities.
Similar to other chronic illnesses, cGVHD information focuses on physical manifestations without much detail on managing daily life and coping with it. Oncology nurses must assess emotional well-being—especially anxiety and depression—as mental health must be as important as physical health in treatment. People living with cGVHD or their caregivers can benefit from suggested resources to help deal with the emotional impact of chronic disease.
How Is cGVHD a Chronic Illness?
Every nurse learns about common chronic illnesses that can last a lifetime, such as diabetes, arthritis, and chronic obstructive pulmonary disease. cGVHD must be on this list of chronic illnesses. Data suggest that cGVHD affects 40-60% of allogeneic SCT survivors. Unfortunately, most cGVHD content covers the pathobiology of the disease, risk factors, prevention or management of symptoms, responses, and novel approaches with very little content on coping or living with cGVHD.
The major types of GVHD have vast differences between acute and chronic illness. Instead of timing, diagnostic and distinctive clinical features define the type of GVHD. Although cGVHD can involve the 3 target organs (skin, liver, and gut) like acute GVHD, cGVHD can have multiple other complications. They often consist of skin thickening, tightening, or dryness; joint stiffness with loss of range of motion; eye dryness and other problems; lung damage causing shortness of breath; genital issues affecting sexuality; and a decreased overall performance status and quality of life.
How to Recognize Depression and Anxiety in Patients With cGVHD
In a prospective, longitudinal study at a tertiary academic center, approximately one-third of patients with cGVHD rated their depression or anxiety using specific assessment tools and scales. This reporting was in a research-controlled environment where patients agreed to disclose their feelings.
Although it is common to feel nervous or discouraged when dealing with cGVHD, persistent anxiety or sadness often requires further assessment and intervention. Oncology nurses must be on the lookout for the following symptoms:
- Changes in eating patterns (not related to physical conditions)
- Concentration problems
- Feelings of worthlessness or a lack of confidence
- Nervous, restless, or tense feelings
- Panic attacks
- Physical ailments such as headache, teeth grinding, or nausea
- Poor sleep or sleeping all the time (not explained by drugs or physical issues)
- Agitation, irritation, or a “short fuse”
- Crying more often
- Detachment from family, friends, or community
- Feeling helpless or useless
- Isolation or wanting to be alone
- Self-medicating with food, alcohol, opiates, or other drugs
Oncology nurses must listen carefully to caregivers as they often notice changes in the patient’s emotions, sometimes before those living with cGVHD do.
How Patients Describe Their GVHD Journey
Each person’s experience with GVHD is different. Medically, patients can experience acute, chronic, or both—either progressing from acute to chronic or in a rare co-occurrence called “overlap syndrome.” Psychologically, each patient’s journey is unique.
- Ivan’s story. Ivan explains in this City of Hope video that “[GVHD] is a day-by-day thing. You are given medications to help with the condition, but it’s not something that goes away overnight.” For him, the key to getting good support is talking to loved ones. “For them [friends] just being there and hearing me out and talking about it helps me release that negative energy or frustration of having gone through GVHD.”
- Brad’s story. Brad shares, in his GVHDNow video, that before his diagnosis with T-cell lymphoma, he taught English as a college professor and played soccer and chess. “I sort of had it made, honestly,” he says. However, he adds, “I didn’t know all the ways in which GVHD would hammer me. Going from cancer to GVHD was basically going from the frying pan to the fire.” At one point, he had intense eye pain with corneal damage, and he states that he was “functionally blind for about a year and a half.” Although Brad had to retire from his teaching job, he continues to find strength in writing. It gives him a “sense of acceptance and control.”
An acute illness like the flu is temporary; hopefully, the person will return to normal. Unfortunately, chronic disease is the opposite as it may never disappear. As Brad says, “Today, I am a chronically ill patient with GVHD.”
How Oncology Nurses Can Connect People Living With cGVHD
Of course, not every patient can solely rely on friends and family for support. Patients often benefit from talking with others on a similar journey or with a licensed professional counselor.
- Connect patients with the transplant team. Oncology nurses can guide patients to the transplant center’s social worker for information about live or virtual support groups.
- Refer patients to the BMT InfoNet website. BMT InfoNet hosts support groups via Zoom for people living with GVHD and support groups for caregivers.
- Suggest online groups and discussion boards. The GVHDNow website lists various supportive resources. The Anthony Nolan Patients & Family Forum is an online discussion board to post to and read about multiple SCT issues, including GVHD.
Oncology nurses caring for patients like Ivan or Brad know that chronic symptoms can make everyday life challenging. Constantly assess the patient’s (and caregiver’s) emotional health. Be cautious about using “anxiety” or “depression,” as these labels can be harmful, stigmatizing, discriminatory, or hurtful. Unfortunately, mental illness still has public and self-stigma. Instead, normalize the situation by asking patients and their caregivers if they have some symptoms (list a few for each anxiety and depression) that other people living with cGVHD often experience. Explore what support they might find helpful rather than providing a list of resources.
EBMT−NIH−CIBMTR Task Force Position Statement on Standardized Terminology & Guidance for Graft-Versus-Host Disease Assessment
Chronic Graft-Versus-Host Disease
Coping and Modifiable Psychosocial Factors Are Associated With Mood and Quality of Life in Patients With Chronic Graft-Versus-Host Disease
Emotional Impact of Chronic GVHD