The patient burden associated with cGVHD is important to consider but difficult to quantitate. People are very different, and cGVHD affects a lot of organs. Some patients may have only one manifestation of the disease, while others may have manifestations that come and go. For example, cGVHD can affect the eyes in various ways. The eyes can feel constantly dry or like they have sand in them, and some patients have problems reading or are bothered by the light. In some patients, cGVHD in the eyes may be the only manifestation that is really giving them trouble.

Mouth sores are another potential bothersome effect of cGVHD. The sores can come and go; when patients have them, they can be quite bad, but then they recede. Lung manifestations are particularly concerning from the clinician’s perspective because they can be life threatening, with some patients needing to permanently receive oxygen. Thus, lung cGVHD can be life altering for patients. Many patients experience pain from scleroderma in their extremities as well. Their legs feel heavy, and they are unable to exercise or do the things that they normally enjoy doing. 

So much of the assessment of patient burden depends on the patient’s perspective, and the total burden of cGVHD is highly variable. Moreover, the patient’s experience and the severity of the symptoms does not always correlate with what we, as clinicians, are able to observe during the visit. Therefore, it is important to ask patients about their cGVHD symptoms, specifically inquiring about what is troubling them and how they are affected. Examples of helpful questions include, “What bothers you the most? What limits you from doing the things that you want to do? What should we focus on trying to treat, and what would be an improvement?”

There are some patients who have dry eyes but do not seem to be bothered by it much, whereas others are devastated by it. And the side effects of potential treatments also need to be factored in. I have had some patients say, “I’d rather have the mouth sores than be hammered with steroids because I hate the effect of steroids.” So, individual preferences may be key, and it is very important that there is a partnership between the patient and their physician and that the patient is able to speak frequently about their cGVHD symptoms.   

Importantly, when we talk about the total patient burden of cGVHD, it is not only the physical manifestations that should be considered but also patient well-being and the mental health aspects. Patients with cGVHD may be struggling to adjust to life post transplant, and there may be some anxiety, depression, or posttraumatic stress disorder.