Introduction: The use of standardized patient-reported outcome (PRO) measures as part of the pediatric pre-transplant psychosocial evaluation process serves two purposes: (1) to identify patient and family strengths and areas of needed support during the transplant process; and (2) to better understand in aggregate the needs of our patient population, to inform the design and evaluation of psychosocial intervention.  At a large US Children’s Hospital in 2021, we implemented an electronic-based screening program across our pediatric heart, lung, liver and kidney transplant programs.  We aim to understand factors influencing completion of these measures, to inform modifications to screening methodology.
Methods: Parents were emailed a link to complete measures of child and family functioning in REDCap prior to the pre-transplant psychosocial evaluation; measures included a form to enter the child’s email (if child was 8 or older) for the child to receive a link to complete measures. Chi-square analyses were conducted to explore differences between parents who completed the psychosocial measures and those who did not.  Factors analyzed included race, ethnicity, childhood opportunity index (COI), evaluation setting (inpatient vs. outpatient), primary language, and organ type.
Results: A total of 393 patients underwent evaluation for transplant over a four-year period. Measures were sent to 309 families (78.6%), of which 173 (56%) of parents completed the measures. Among the 157 children eligible to complete surveys (age 8 and over), 23 (14.6%) did so. Parents who completed measures were more likely to be white (X2 (5, n=309) = 39.086, p<.001), English-speaking (X2 (1, n=309) = 10.633, p=.001), and from communities with a higher COI (X2 (4, n=309) = 20.078, p<.001).  There were no significant differences based on organ type (X2 (4, n=309) = .522, p=.971) ethnicity (Hispanic/Latino vs. not Hispanic/Latino; X2 (1, n=309) = .527, p=.281), or evaluation setting (X2 (2, n=309) = 1.294, p=.524).
Discussion: Completion rates of screening measures are more closely related to health disparities (race, language, and community resources) than to circumstances of the transplant evaluation (organ type or evaluation setting).[WK1]   Further understanding of how these factors create barriers to measure completion will be critical as we undertake modifications to the screening methodology.  It is important that the information collected is representative of all families, and that every family has equal opportunity to share their strengths and needs, and to contribute to the evidence base for future psychosocial intervention in pediatric solid organ transplant.