Sociodemographic Differences in Early Access to Liver Transplantation Services
C. L. Bryce a,b,d,∗, D.C. Angus c,d, R. M. Arnold a, C.-C. H. Chang a,b,e, M. H. Farrell a, C. Manzarbeitia f, I. R. Marino g
and M. S. Roberts a,b,d,h
a Division of General Internal Medicine, Department of Medicine, b Section for Decision Sciences and Clinical
Systems Modeling, c The Clinical Research Investigation and Systems Modeling of Acute Illness (CRISMA)
Laboratory, Department of Critical Care Medicine, d Department of Health Policy and Management, Graduate
School of Public Health and e Department of Biostatistics, Graduate School of Public Health, University of
Pittsburgh, Pittsburgh, PA f(former) Chair, Division of Transplant Surgery, Einstein Medical Center and Department of Surgery and g Department of Surgery, Jefferson Medical College, Thomas Jefferson University, Philadelphia, PA
h Department of Industrial Engineering, University of Pittsburgh, Pittsburgh, PA
*Corresponding author: Cindy L. Bryce, brycec@upmc.edu
The question of whether health care inequities occur before patients with end-stage liver disease (ESLD) are waitlisted for transplantation has not previously been assessed. To determine the impact of gender, race and insurance on access to transplantation, we linked Pennsylvania sources of data regarding adult patients discharged from nongovernmental hospitals from 1994 to 2001. We followed the patients through 2003 and linked information to records from five centers responsible for 95% of liver transplants in Pennsylvania during this period. Using multinomial logistic regressions, we estimated probabilities that patients would undergo transplant evaluation, transplantwaitlisting and transplantation itself. Of the 144 507 patients in the study, 4361 (3.0%) underwent transplant evaluation. Of those evaluated, 3071 (70.4%) were waitlisted. Of those waitlisted, 1537 (50.0%) received a transplant. Overall, 57 020 (39.5%) died during the study period. Patients were less likely to undergo evaluation, waitlisting and transplantation if they were women, black and lacked commercial insurance (p < 0.001 each). Differences were more pronounced for early stages (evaluation and listing) than for the transplantation stage (in which national oversight and review occur). For early management and treatment decisions of patients with ESLD to be better understood, more comprehensive data concerning referral and listing practices are needed.
Introduction
Policies for the allocation of donated organs to patients who need them have been scrutinized and revised repeatedly in an effort to both enhance the public health benefits of transplantation and improve the process’s equity and fairness (1–7). These changes, however, can only have minimal impact, as the allocation of organs is simply the last step in transplantation, and potential barriers can be encountered at the diagnostic, referral or listing stages as well. Indeed, as Alexander and Sehgal observed in their study of end-stage renal disease, gender- and race-based barriers to care are found at all stages of management, from diagnosis of end-organ disease through the actual receipt of an organ (8).
What allowed Alexander and Sehgal to examine access in the entire system was the availability of information from the US Renal Data System (USRDS), a populationbased registry created by Medicare to track the management of patients with end-stage renal disease from diagnosis/ dialysis through death and/or transplantation (9). No similar registry exists for patients with liver disease. Once patients progress to end-stage liver disease (ESLD) and are placed on the United Network for Organ Sharing (UNOS) liver transplant waiting list, access- and equity-related issues can be monitored. However, the UNOS waitlist includes only those individuals who were listed by transplant centers (10), and it fails to account for potential inequities associated with diagnosis, referral or evaluatedbut- not-listed decisions. The Institute of Medicine (IOM) agrees with this analysis, indicating that ‘the larger problems of equitable access to transplantation occur prior to a patient being put on a waiting list for a transplant; they take the form of inadequate health insurance coverage and inadequate access to primary care, proper diagnosis and treatment, and referral for transplant evaluation’ (11).
Previous evaluation of the early stages of the process leading to liver transplantation has been survey based or limited to descriptions of center-specific practices (12–15). A survey conducted by the American Society of Transplant Physicians reported on practice variation across centers, including both patient factors (e.g. age, compliance and medical condition) and center factors (academic vs. nonacademic medical centers) (12). Trotter et al. described early practices and determinants of successful transplantation in North Carolina, noting that evaluation of candidates included subjective assessments by the team and that exclusionary criteria often varied across centers (e.g. patient age) (13).
Eckhoff et al. provided a more systematic examination of patients referred to the center for liver transplantation and tested explicitly for racial differences (14). The authors reported that although blacks were referred to their center less often than appropriate given their prevalence of liver disease and were sicker at referral than whites, once evaluated, blacks and whites were equally likely to be listed for transplantation, to receive a transplant and had similar 1- and 3-year posttransplant survival rates.
More recently, Julapalli et al. examined liver-related encounters for a large VA Medical Center, following patients for 1 year to analyze referral patterns for transplantation services (15). The mention of liver transplantation in the medical record or other evidence of arranging for referral to a transplant center occurred in only 21% of all cases and was discussed less often if the patient was black or had alcoholic liver disease.
To our knowledge, the only population-based study of early access to transplantation services used discharge data for the state of North Carolina to estimate the prevalence of ESLD and the covariates associated with the likelihood of liver transplantation. Although several nonmedical factors (e.g. source of payment, distance to transplant center) were associated with the likelihood of transplantation, the authors were not able to link hospitalization data to other sources or to follow patients over time (16).
This study follows patients with liver disease who might potentially need a liver transplant in the future, allowing us to examine the early barriers to access and the impact of sociodemographic factors (i.e. gender, race or insurance status) on variation in referrals to and listings by transplant centers. It uses hospitalization data for liver-related discharges as a means of flagging patients who either have or may be ‘at risk’ for ESLD and may eventually require transplantation. We treat the earliest instance for each patient as the index hospitalization and then link discharge records to other data sources that allow us to follow these ‘transplant-potential’ patients over time, using information about subsequent hospitalizations, transplant evaluation, transplant-related care and death. We compare sociodemographics observed prior to listing with those observed after listing, as a way of assessing whether later stages provide an accurate picture in describing the overall equity of the current liver transplantation process. This study follows patients with liver disease who might potentially need a liver transplant in the future, allowing us to examine the early barriers to access and the impact of sociodemographic factors (i.e. gender, race or insurance status) on variation in referrals to and listings by transplant centers. It uses hospitalization data for liver-related discharges as a means of flagging patients who either have or may be ‘at risk’ for ESLD and may eventually require transplantation. We treat the earliest instance for each patient as the index hospitalization and then link discharge records to other data sources that allow us to follow these ‘transplant-potential’ patients over time, using information about subsequent hospitalizations, transplant evaluation, transplant-related care and death. We compare sociodemographics observed prior to listing with those observed after listing, as a way of assessing whether later stages provide an accurate picture in describing the overall equity of the current liver transplantation process.
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American Journal of Transplantation - 07 May 2009
06.60301809