“Things we deal with in exchange for cure”: How hematologists discuss graft versus host disease with patients considering allogeneic stem cell transplant.
Authors: Thordardottir Thorunn Halldora , Rodenbach Rachel , Hall Aric C. , Brauer Markus , Ward Earlise , Smith Cardinale B. , Campbell Toby Christopher 
Published: June 2024

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Background: Graft versus host disease (GVHD) remains an important complication of allogeneic stem cell transplant (alloSCT). Severe forms can impact quality of life long term or prove fatal. While disparities exist in routine doctor-patient communication, the complexity of alloSCT adds barriers and magnifies disparities in healthcare. How hematologists discuss risks may impact patients’ perception and understanding. Here we explore how hematologists explain GVHD and identify differences based on patient race. Methods: This is a secondary analysis of a qualitative study of video-recorded virtual encounters. We recruited transplant hematologists in the US and randomly assigned them to meet with a patient actor of Black or white race trained to portray the same 67 years old man with newly diagnosed high-risk myeloid neoplasm referred for discussion of treatment options including alloSCT. The clinical case was designed to represent a realistic transplant candidate and to enable hematologists to focus on treatment decision making. Results: 37 hematologists from 25 centers participated (65% male, 35% non-white, median age 44). All hematologists shared that transplant carries risks; however, they varied in the extent to which they discussed GVHD. 16% (6/37) of them did not mention GVHD and 19% (7/37) briefly introduced it, deferring more discussion to a later visit. Two thirds discussed GVHD (10/17 with the Black patient and 14/20 with the white patient) but provided variable details. Most described a spectrum of severity: that GVHD is a major, potentially life-threatening risk of transplant but most develop mild and treatable form. They explained that monitoring for GVHD was the main reason for frequent clinic visits. Some discussed that chronic GVHD could be a primary driver of impaired quality of life after transplant, where “we are sometimes trading one disease for another”. Extensive conversations on differences between acute and chronic forms, manifestations, risk factors, treatment and prognosis occurred in 12% (2/17) of visits with the Black patient vs 25% (5/20) with the white patient. Hematologists gave different quantitative GVHD risk estimates ranging from ‘two thirds” to “the historical 30% has been taken down to 10%”. Conclusions: GVHD was included in most alloSCT decision making visits, however over a third of hematologists did not provide meaningful information about it in their first conversation with a patient. The information provided varied with risk of the condition quoted as 10-66%. Few provided extensive details but these were twice as likely to be given to the white patient. GVHD is an important and potentially life-limiting toxicity of alloSCT, this study suggests patients are asked to make transplant decisions based on variable information which may contribute to disparities in this already difficult to access therapy.