Abstract

Chronic graft versus host disease (cGVHD) is a life-threatening complication of allogeneic hematopoietic stem cell transplantation (HSCT). This study provides a systematic review of evidence on the patient-reported symptom burden of cGVHD. Systematic literature review was performed using PubMed, Scopus and Cochrane Controlled Register of Trials databases. Literature search was limited to English-language articles published after 2005. Only studies which used the National Institutes of Health (NIH) Consensus Criteria for diagnosing cGVHD and collected patient-reported symptom burden data were included. From the 1211 found references, 122 collected patient-reported data. There were 38 studies which specifically collected symptom burden data from patients, from which 35 used the 2005 and 3 used the 2014 NIH Consensus Criteria to define cGVHD. Different study designs were applied, the most frequently used were prospective (n=18) and cross-sectional cohort study (n=10). The number of involved cGVHD patients ranged from 19 to 584. Majority (n=28) of the studies were conducted in the USA. The Lee cGVHD Symptom Scale was the most frequently used instrument, applied in 28 studies. The NIH symptom scores reported by patients were also used frequently to assess organ-specific symptoms. The other instruments were mainly organ-specific measures (e.g. Ocular Surface Disease Index) or general measures to assess pain (e.g. Visual Analog Scale). Twenty-one studies were organ-specific; oral and ocular cGVHD were the most frequently investigated with 8 and 7 studies, respectively. Severity of the disease seems to be associated with higher symptom burden. The patient-reported symptom burden among patients diagnosed with cGVHD by NIH Consensus Criteria was widely assessed in the literature. The Lee Symptom Scale is the most frequently used instrument in trials. Organ involvement and disease severity are both important factors of the cGVHD’s symptom burden. New treatment options should aim to mitigate symptom burden of cGVHD patients.

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