A daily symptom diary called the MastocytosisMastocytosis Rare disease caused by the buildup of mast cells. Cutaneous mastocytosis primarily affects the skin and is more common in children, while systemic mastocytosis affects internal organs and is more common in adults. Symptom Severity Daily Diary (MS2D2) works well for tracking symptom severity and changes in adult patients with nonadvanced systemic mastocytosis (SM), according to a recent study published in the journal Quality of Life Research.
The symptom diary asks patients to answer questions every day about how bad their symptoms were over the past 24 hours. Patients rate symptoms on a scale of 1 to 10; for example, for itching, 0 means “no itching” and 10 means “severe itching.”
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To figure out how a patient is doing and whether a treatment is working, researchers added up scores from 11 of the diary questions to create a “total symptom score.” This score can range from 0 to 110. The 11 questions are grouped into four categories:
- Skin problems: itching; flushing; skin redness; covered with spots.
- Stomach and pain problems: nausea; abdominal pain; bone pain; headache.
- Thinking problems: difficulty concentrating; difficulty remembering things.
- Tiredness: feeling of tiredness.
Researchers tested the MS2D2 using answers from 230 adults with nonadvanced SMNonadvanced SM In these subtypes of SM, mast cells accumulate in the body but do not usually cause severe organ damage. Nonadvanced SM includes the subtypes indolent SM and smoldering SM.. They found that the tool gives accurate, dependable results and can tell the difference between patients with mild, moderate and severe symptoms. It can also detect when a patient’s symptoms are truly getting better after starting treatment
This means that the symptom diary “can help researchers and clinicians assess treatment benefits and better understand how therapies impact patients’ daily lives,” the researchers said.
Read more about SM testing and diagnosis
Researchers also figured out how much a patient’s score needs to drop to count as real, true improvement. On a scale of 0 to 10, a patient’s score needed to drop by about two points, which corresponds to a 30% to 40% reduction in symptom severity. This gives researchers a clear number to look for when they test new treatments.
