Dialysis Providers’ Perceptions of Barriers to Transplant for Black and Low‐Income Patients: A Mixed Methods Analysis Guided by the Socio‐Ecological Model for Transplant

Published date01 December 2017
Date01 December 2017
DOIhttp://doi.org/10.1002/wmh3.251
Dialysis Providers’ Perceptions of Barriers to Transplant
for Black and Low-Income Patients: A Mixed Methods
Analysis Guided by the Socio-Ecological Model for
Transplant
Anna-Michelle M. McSorley , John D. Peipert, Cynthia Gonzalez,
Keith C. Norris, Christina J. Goalby, Leanne J. Peace, and Amy D. Waterman
Although mandates require all dialysis patients be informed about transplant, Black and low-income
patients remain less likely to receive transplant education, and signif‌icant racial and socioeconomic
disparities in access to transplant persist. This mixed methods study, utilizing surveys and focus
groups, examined 48 dialysis providers’ perceptions of transplant barriers for Black and low-income
patients. Focus group transcripts were coded for common themes, which were organized by level of
the Socio-Ecological Model for Transplant (SEMT). On surveys, over 50 percent of providers
reported having insuff‌icient time to provide transplant education. In focus groups, providers
perceived that Black and low-income patients experience greater barriers to transplant. These
perceptions, as well as limited time and resources, could enable subtle biases against comprehensive
transplant education for these patient groups to emerge. Raising awareness among providers about
existing biases and supplementing transplant education within dialysis centers may improve the
consistency of education and access to transplant.
KEY WORDS: education, disparities, transplant, kidney, dialysis, Black, low-income, socio-ecological
model
Introduction
In the United States, over 650,000 patients have end-stage renal disease (ESRD)
with over 100,000 new patients diagnosed every year (United States Renal Data
System, 2015). Despite the signif‌icant survival and quality of life benef‌its afforded
by transplant compared to dialysis (Neipp et al., 2006; United States Renal Data
System, 2015), most ESRD patients remain on dialysis (United States Renal Data
System, 2015). Further, while Black patients make up 32 percent of ESRD patients
nationally (United States Renal Data System, 2015), they receive only 25 percent of
transplants and 12–14 percent of living donor kidney transplants (LDKTs) annually
World Medical & Health Policy, Vol. 9, No. 4, 2017
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doi: 10.1002/wmh3.251
#2017 Policy Studies Organization
(OPTN data as of 8/19/2016). This trend is more extreme in Missouri, where Black
patients accounted for 40 percent of the total ESRD population in 2014, but received
only 28 percent of transplants in total and 9 percent of LDKTs (Heartland Kidney
Network, 2014) (OPTN data as of 8/19/2016). Additionally, patients with lower
socioeconomic status (SES) have signif‌icantly reduced access to transplant, and are
up to 75 percent less likely to receive LDKTs than those with higher SES (Axelrod
et al., 2010).
One constraint on Black and low-income patients’ access to transplant is their
insuff‌icient exposure to education about its risks and benef‌its (Kucirka, Grams,
Balhara, Jaar, & Segev, 2012; Waterman et al., 2013). The Centers for Medicare
and Medicaid Services’ (CMS) mandates that every dialysis patient must be
informed of their transplant options (Centers for Medicare & Medicaid Services,
2008), but transplant education is often not administered consistently or
effectively in dialysis centers (Balhara, Kucirka, Jaar, & Segev, 2012; Kucirka et al.,
2012; Salter et al., 2014; Waterman, Peipert, et al., 2015). In fact, transplant
education practices vary from center to center and include referring patients to an
external transplant education program or simply providing an oral recommenda-
tion to be evaluated for transplant (Waterman, Peipert, et al., 2015). Moreover, the
social workers and nurses, who are predominantly responsible for transplant
education in dialysis centers, report having limited knowledge about transplant,
and little time to deliver education (Waterman, Peipert, et al., 2015). This places
patients at a disadvantage, as it has been demonstrated that having access to
more transplant education resources is associated with the successful completion
of transplant evaluation. Similarly, patients with more transplant knowledge at
the onset of the transplant evaluation process are more successful at receiving
transplants years later (Waterman et al., 2013).
Previous quantitative s tudies have shown suppor t for the inf‌luence of key
patient-level factor s (e.g., patient race, ac cess to health insurance , employment
status) (Patzer, Plant inga, Krisher, & Pastan, 2 014), provider and healt h care
system level factors (e.g., t he number of staff in the center, p rof‌it-status,
informing patients abo ut transplant, accessib ility of transplant cente rs in ESRD
Network) (Axelrod et al., 2010; Kucirka et al., 2012; Patzer et al., 2014), and
community and societal level factors (e.g., neighbor hood poverty) (Patzer et al.,
2009) on transplant rece ipt. While these studie s examined mostly non-
modif‌iable barriers to tr ansplant, qualitative studies of dialysis providers
delivering education are still needed to explore the specif‌ic modif‌iable
mechanisms by which these factors prevent Black and low-income patients
from accessing transp lant to inform the develo pment of appropriate int erven-
tions. These dialysis providers, specif‌ically soci al workers and nurses who
consistently have direct contact with dialysi s patients, have a critica l vantage
point from which to observe multiple levels of facto rs present in daily dialysi s
center operations as wel l as the lives of their patie nts. In addition, their
interpretation of the complexities of these factors impacts how they choose to
deliver transplant edu cation to Black and low- income patients. There fore, we
conducted a mixed methods study with dialysis providers to learn more about:
400 World Medical & Health Policy, 9:4

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