Management pitfalls and prevalence of lost to follow-up due to unpredicted death in systemic sclerosis
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Abstract
Lost to follow-up in systemic sclerosis (SSc) is reported. Unpredicted death before visit schedule might be the result of pitfalls in patients care management. We aimed to define the prevalence of lost to follow-up due to unpredicted death in SSc and management pitfalls. A retrospective study was performed using scheduled visits to the Scleroderma Clinic, Khon Kaen University, between January 2019 and April 2020. A direct telephone call was performed when lost to follow-up was identified. If no response was received, the medical records were reviewed, and health status was requested from the Civil Registration Bureau. A total of 497 adult SSc patients with 2,040 follow-ups from 53 visits were reviewed, of whom 37 were lost to follow up due to unpredicted death for a prevalence of 7.4% (95% cumulative incidence (CI) 5.3-10.1). The respective median time from death to the next scheduled visit and median duration of disease was 19.7 days (Interquartile Range (IQR) 2.9-34) and 3.8 years (IQR 1.7-7.5). Six cases were defined as an improper interval of follow-up and monitoring that led to death before the scheduled visit. All had cardiopulmonary involvement. One case was defined as improper management given for cardiac involvement. Pneumonia and sepsis were the causes of death in 4 of 14 cases that received the immunosuppressant. Death before the scheduled follow-up visit occurred among SSc patients, particularly among those with cardiopulmonary involvement and inadequate monitoring or management. Close monitoring should be the norm for SSc patients with cardiopulmonary involvement to avoid unpredicted death.
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