Optimizing Specialty Care Access for Veterans with End-Stage Organ Diseases

Background: Low rates of referral to specialty care among Veterans represent a significant barrier to access
and optimal clinical outcomes. This is particularly true for Veterans with end-stage organ diseases (e.g.,
advanced chronic kidney disease (CKD), decompensated cirrhosis), who are potentially eligible for life-saving
transplantation and require specialty care for optimal disease management. Despite the high prevalence of
end-stage liver and kidney diseases among Veterans, less than a third of Veterans with advanced CKD and
decompensated cirrhosis are referred to a specialist and <5% for transplant evaluation. A comprehensive
assessment of patient-, provider- and system-level factors influencing specialty care referral and referral for
transplant evaluation is critical to developing targeted strategies and approaches to optimize referral
appropriateness as there is a clear association between being seen by a specialist and improved survival.
Significance/Impact: Ensuring timely access to high-quality primary and specialty care is a core mission of
the Veterans Health Administration (VHA). Factors affecting specialty care referral and referral for transplant
evaluation among Veterans with advanced chronic liver and kidney diseases are incompletely characterized.
This knowledge is critical to designing effective strategies to enhance referral appropriateness and optimize
access. Hence, there is an urgent unmet need to improve our understanding of these complex relationships
and the mechanisms by which they affect referral to specialty care and referral for transplant evaluation.
Innovation: Most existing work has focused on steps downstream of referral to specialty care and for
transplant evaluation, such as completion of transplant evaluation, waitlisting, transplant receipt, and post-
transplant outcomes -- thus, barriers to specialty care referral and referral for transplant evaluation remain
understudied. This study will comprehensively examine and identify the multi-level factors driving referral to
specialty care and referral for transplant evaluation, with the goal of generating best practice recommendations
to optimize referral appropriateness and equity. This knowledge is critical to improving referral
processes/pathways, enhancing Veteran outcomes, and informing policy changes to increase parity in access.
Aims: 1) Characterize the multi-level factors associated with specialty referral and referral for transplant
evaluation among patients with advanced chronic liver and kidney diseases. 2) Examine patient and provider
knowledge, attitudes, and perceived barriers/facilitators of specialty care referral and referral for transplant
evaluation. 3) Develop best practice recommendations to optimize referral appropriateness and equity using
modified Delphi panels.
Project Methods: Aim 1 is a retrospective observational cohort study using multi-level modeling to identify key
patient-, provider-, and system-level factors associated with non-referral to specialty care and for transplant
evaluation. As part of Aim 1, the impact of social determinants of health on referral to specialty care and for
transplant evaluation also will be evaluated. In Aim 2, we will conduct semi-structured qualitative interviews
with primary and specialty care providers and patients sampled from 6 VA health systems to explore variation
in knowledge, attitudes, and perceived barriers/facilitators of referral to specialty care and for transplant
evaluation. In Aim 3, we will use a modified Delphi approach to convene two panels of VA operational leaders
and other experts to develop best practice recommendations to maximize referral appropriateness and equity.
Implementation/Next Steps: This study will provide critical information regarding key factors impacting
specialty care referral and referral for transplant evaluation among vulnerable Veterans with advanced chronic
liver and kidney diseases. Products of the grant will provide vital information to VHA leaders on how to
enhance referral appropriateness and equity by generating actionable strategies to address key barriers to
referral to specialty care and for transplant evaluation.

Grant Number: 5I01HX003658-02
NIH Institute/Center: VA
Principal Investigator: Megan Adams