Symptom burden scores help systemic sclerosis management

Use of the patient-focused measurements derived from the Symptom Burden Index (SBI) instrument may help physicians providing care to patients with systemic sclerosis (SSc) resolve the problems that most directly affect their quality of life. The SBI provides internally consistent burden scores, the scores are independent across the SSc problems measured, and the scores correlate with measurements derived from the Health Assessment Questionnaire-Disability Index and the Medical Outcomes Study Short-Form 36 questionnaire.

Kallen and coworkers devised the SBI to assess 8 major SSc problem areas, the skin, hand mobility, calcinosis, dyspnea, eating, sleep, the bowels, and pain. They wanted to determine how well the SBI worked and to quantitate the burden per patient and the number of patients affected by each problem; 62 patients completed the SBI, rating the intensity, impact, and frequency of each problem.

Pain, hand mobility, and skin issues were the most common and burdensome for the patients. Least common were dyspnea, eating, and calcinosis. Patients experienced, on average, 5.7 of the 8 problems; those who were married had fewer issues than those who were single.

The authors noted that this approach to measuring symptomatic burden could be applied to patients experiencing other disease conditions.