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More Than Words

Health Literacy and Liver Transplant Waitlisting

Serper, Marina, MD, MS1; Wolf, Michael S., PhD, MPH2,3

doi: 10.1097/TP.0000000000002537

1Division of Gastroenterology, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.

2Health Literacy and Learning Program, Division of General Internal Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL.

3Department of Learning Sciences, School of Education and Social Policy, Northwestern University, Evanston, IL.

Received 22 October 2018.

Accepted 24 October 2018.

The authors declare no funding or conflicts of interest.

M.S. and M.S.W. participated in writing of the paper.

Correspondence: Marina Serper, MD, MS, 3400 Spruce St, 2 Dulles, Philadelphia, PA 19104. (

Health literacy, defined as one’s ability to obtain and process information to make appropriate health decisions, has now been the subject of multiple investigations spanning nearly 3 decades and has been shown to be strongly associated healthcare utilization, healthcare engagement, and mortality across diverse clinical contexts.1 In this issue of Transplantation, Bababekov et al2 aimed to investigate whether organizational health literacy, defined as the degree to which healthcare organizations facilitate patients’ ability to navigate, understand, and use healthcare services to improve their health, correlates with liver transplant (LT) waitlisting.3 The authors’ hypothesis was that greater institutional health literacy, as evidenced by the readability of a transplant center’s website, would have higher LT waitlisting rates among patients with lower literacy (operationalized as low educational attainment with less than high school education). The authors measured readability of LT online resources at 112 LT centers using the Clear Communication Index (CCI) and examined associations with this measure and the proportion of patients with low educational attainment waitlisted at each center during the study period (2006–2017).4 Educational attainment data were obtained from a validated source, the American Community Survey, at the level of the donor service area (DSA).

The authors found that a total of 11% of waitlisted patients had less than a high school education and that none of the transplant centers’ online educational materials reached the desired CCI score of 90, indicative of easy to understand materials. In fact, the median CCI was 73.6 with an IQR of 67.5–75.0. In multivariable analysis, the authors adjusted for patient characteristics, average educational attainment of the DSA, and the Herfindahl-Hirschman Index, a measure of the DSA market competitiveness. The main result was that a 1-point increase in the CCI of online LT educational resources was associated with a 0.2% increase in the proportion of patients listed with low EA. From this finding, Bababekov et al2 concluded that increasing the readability of these online resources to an acceptable score of 90 could result in a 3.6% or nearly 3000 absolute increase in the number of waitlisted patients with low educational attainment. Interestingly, it was also noted that the mean level of educational attainment was not at all associated with CCI scores suggesting that these online materials were not tailored to the population they were intended to serve.

The major take-home finding of this study is the universally inadequate readability of LT online educational materials put forth by transplant programs. However, this should not be surprising; a recent body of evidence has repeatedly and consistently found that health information provided to patients from health systems, including solid organ transplant centers in the context of both kidney transplant and chronic liver disease, is presented at too high a reading grade level.5,6 For LT candidates, this is most concerning, as prior research has found high rates of limited health literacy in this patient population with a significant impact on posttransplant outcomes.7 The baseline low literacy of this patient population could be even further exacerbated by concurrent hepatic encephalopathy before transplant making the listing process even more difficult to navigate.

However, it is equally important to recognize that LT evaluation and methods for waitlisting individuals are complex, involving multiple steps, whereby the role of online resources may have limited influence and represent the tip of the iceberg when it comes to facilitating the listing process. LT referral typically begins with a recognition of decompensated liver disease by a community primary care physician or gastroenterologist. For this to occur, a patient has to have access to care and be engaged in care. Subsequently, the patient has to be adherent with outpatient appointments, be deemed to have sufficient social support, and be generally free from substance abuse and major psychiatric comorbidities in order for the referral to be considered. After that point, he or she needs to have adequate insurance coverage to be seen by a transplant center, be accompanied by an involved family or friend, and in some cases have the means to travels hundreds of miles to subsequently undergo a rigorous medical and psychosocial evaluation. After this, the candidate must complete a battery of medical tests that may take months and require significant time and financial commitments by caregivers. As such, those who make it to the waitlist already represent a select group with more resources, access to care, and higher than average health literacy skills. How to optimally reach those who are underserved and not able to navigate complex healthcare systems remains an open question and should be further investigated.

The overall message of this study by Bababekov et al2 is commendable; transplant centers should continually work to ensure their communication with patients are clear, understandable, and following health literacy best practices. Their findings also invite more questions than answers. Educational attainment is not equivalent to health literacy; prior seminal investigations have found the correlation, while strong, to be convoluted by other socioeconomic metrics such as income, occupation, and other social determinants of health. The authors do, however, if only indirectly, invite us to assess the process by which patients and their families are properly inundated as they are identified and considered for transplantation. This is an equally important and understudied issue: how do health systems initially recognize patients with advanced liver disease, educate them, and link them to knowledgeable providers. In summary, we appreciate that this investigation brings greater attention to the problem of low health literacy specific to LT, as there are many unique challenges in this clinical context pertaining to patient education and engagement (pre- and post-LT) that need to be addressed far beyond the readability of online educational resources.

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