Researchers designed a symptom severity daily diary for the benefit of patients with non-advanced systemic mastocytosis (SM) to track disease evolution, according to a study recently published in Clinical Lymphoma Myeloma and Leukemia.
During medical appointments, it can be challenging for people with chronic diseases like SM to remember all the daily fluctuations in their symptoms since their last visit. Doctors often recommend that patients keep a symptom diary tracking how their symptoms evolve over time, to help evaluate if their treatment plan is working.
The researchers hence sought to develop a specific diary designed to make the process of symptom recording easier for patients with non-advanced SM, which they called the Mastocytosis Symptom Severity Daily Diary (MS2D2).
Read more about SM causes and risk factors
The researchers developed a preliminary conceptual model based on feedback from 18 patients with non-advanced SM. With these building blocks in place, the researchers then proceeded to create draft items for the MS2D2. Further refinement of the questionnaire was possible with additional patient feedback.
Patient responses regarding domains of interest were extensive, broaching subjects associated with physical symptoms such as dermatology and gastrointestinal dysfunction, as well as cognitive, emotional and mental symptoms such as pain, fatigue and emotional well-being. All patients raised the issues of flushing and skin redness, and nearly all reported fatigue, itching, brain fog and diarrhea.
The close teamwork between investigators and patients allowed them to develop a refined final draft of the MS2D2, which contained items deemed most relevant to patients.
“The content validity of the MS2D2 is supported by findings from interviews with patients suffering from [non-advanced SM], which confirmed the relevance of the signs/symptoms captured within the instrument and that the items and response options are clear and well understood,” the authors of the study wrote.
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