INTRODUCTION
Hematopoietic stem cell transplant (HSCT) is a widely used treatment for
many malignant and non-malignant conditions. However, receiving a
transplant can cause significant stress for a patient and their family,
and life following transplant can present additional challenges.
Children often experience high levels of affective and somatic distress
at admission for HSCT that escalates after conditioning. This stress is
often compounded by strict long-term adherence to medications, frequent
monitoring of physical health and labs, and numerous trips to clinic,
culminating in an immense psychological toll. As a result, these
patients are at a higher risk for acute distress and lingering
adjustment problems in later years, affecting their quality of life
(QoL).1,2 Poor QoL following HSCT can be related to
the psychological outcomes of treatment, impaired social skills due to
lack of peer interaction and chronic school absenteeism, cognitive and
academic decline, and the stress of loved ones.3,4Studies have generally shown improvements in patient QoL for the years
following pediatric HSCT; however, a significant proportion of patients
remain at risk for experiencing adjustment
difficulties.5,6 QoL after HSCT is increasingly being
recognized as a major outcome parameter of
readjustment.7,8 Multiple studies have highlighted key
factors that affect readjustment and QoL years after pediatric
HSCT.9-13 Pre-transplant family cohesion and adaptive
abilities of individual patients,10 as well as
development of long-term complications of HSCT such as graft versus host
disease and other comorbidities,9 are thought to
impact readjustment and thus affect QoL.
Race is a known predictor of health-related outcomes, and racial
disparities have been shown to be prevalent in a multitude of diseases,
including cancers and blood disorders.14-17 Racial
disparities in the access to and outcomes of HSCT have been explored,
with most studies describing inferior clinical outcomes for Hispanic and
Black patients as compared to non-Hispanic
Whites;18-22 notably, the impact of racial disparities
on the QoL of HSCT patients years after treatment has yet to be
explored. With the goal of identifying barriers to improved QoL in
transplant patients from marginalized and minority populations, we
explored the impact of race and ethnicity on QoL two or more years
post-transplant in a cohort of pediatric patients undergoing HSCT. We
further explored how transplant and socioeconomic variables might serve
as modifiers of such relationships. We hypothesized that (1) race and
ethnicity affect the readjustment phase and thus impact QoL, (2)
minority pediatric patients will experience lower QoL than their white
counterparts, and (3) racial differences in QoL will be modified by the
inclusion of socioeconomic variables in our analyses.