Toward Standardized Screening for Chronic Graft-Versus-Host Disease: Insights from the Engraft Learning Network

BACKGROUND: Chronic graft-versus-host disease (cGVHD) affects up to 54% of allogeneic hematopoietic cell transplantation (HCT) recipients and is the leading cause of late non-relapse morbidity and mortality. Despite the availability of NIH consensus criteria, FACT accreditation standards, and CIBMTR reporting requirements, standardized screening practices remain inconsistent. The Engraft Learning Health Network (LHN) conducted a multicenter assessment to characterize cGVHD screening practices across participating transplant centers.

OBJECTIVE: To characterize current cGVHD screening practices across participating transplant centers within the Engraft Learning Health Network (LHN), identify areas of practice variation, and inform development of a standardized screening approach.

STUDY DESIGN: This multicenter qualitative study included 10 transplant centers (8 pediatric and 2 adult) within the Engraft LHN. Thirty-three structured interviews were conducted with clinician representatives using a standardized guide addressing eight screening domains: assessment schedules, documentation practices, and organ-specific screening of the skin, oral cavity, ocular, pulmonary, gastrointestinal, genitourinary, and musculoskeletal systems. Interview summaries were validated by participants and analyzed to quantify screening practices across centers using descriptive statistics and heat map visualization.

RESULTS: Marked heterogeneity was observed across all screening domains, with no uniform approach identified across centers. Assessment schedules ranged from weekly to as-needed evaluations, with only 52% of respondents reporting monthly evaluations in the first six monthsfollowing day 100 post-transplant and 37% continuing quarterly assessments beyond one year. Only 10% incorporated the Lee Symptom Scale (LSS) into routine documentation. Skin was universally included in the review of systems, but comprehensive examination (12%) and structured scoring (21%) were infrequent. Pulmonary function test monitoring showed significant gaps at intermediate timepoints, with most centers performing PFTs at annual milestones but fewer than 25% reporting assessment at quarterly intervals recommended by current guidelines. Genitourinary screening demonstrated the greatest inconsistency, with 42% and 63% of respondents not routinely discussing symptoms with female and male patients, respectively. Rare manifestations including neuropathy and serositis were screened for by fewer than 10% of centers.

CONCLUSIONS: cGVHD screening practices vary widely across transplant centers in timing, documentation, organ-specific assessment, and utilization of standardized tools. Existing assessment frameworks, while clinically detailed, pose practical challenges for routine use outside specialized GVHD clinics. These findings highlight the need for a streamlined, evidence-informed screening bundle with defined assessment intervals, guideline-recommended PFT surveillance, and integration of patient-reported outcome measures. The Engraft LHN is leveraging these findings to develop and implement such a bundle at the provider, patient, and center levels using rapid-cycle quality improvement methodology.