Measuring Disease and Transplant Knowledge among Patients with Advanced CKD

Despite multiple national policy directives aimed at reducing disparities in kidney disease, inequities in the provision of care and access to optimal treatment stubbornly persist for CKD and kidney failure populations in the United States. Disease awareness remains low, with only 17% of patients with CKD stage 3 aware of their kidney disease (1); with approximately one third of patients with no or unknown nephrology care prior to commencing KRT (1); and with access to kidney transplantation, the preferred treatment for advanced CKD and kidney failure (2), remaining elusive for the majority of patients in need. Patient acquisition of knowledge of their illness and kidney transplant is arguably the first step in the complex journey toward obtaining a transplant. Research has documented important associations between lack of knowledge about kidney disease and treatment options with reduced access to care and poor outcomes (3,4)—as well as evidence of improvements in access to transplant when patients have access to comprehensive transplant education (5). To date, few measurement tools have been developed and validated in the CKD and kidney failure populations (6–9). In addition, there is no national assessment of knowledge about disease and treatment options among patients to assess deficits that may need to be addressed to ensure equity in access to information critical to pursuing treatment.

In this issue of CJASN, Waterman et al. (10) help fill this gap and present results of the validation of the Knowledge Assessment of Renal Transplantation (KART) 2.0, which includes an updated version of the original KART 1.0 scale (9), a scale developed to measure transplant knowledge in patients with kidney failure, as well as a CKD knowledge scale. The updated KART scale includes 16 items assessing transplant knowledge, including items that cover immunosuppressive medication insurance coverage, post-transplant cancer risk, and aspects of living donation (10). KART 2.0 also includes a nine-item CKD knowledge scale that assesses patients’ general knowledge of CKD (10) using items from a previously validated CKD knowledge scale (6). The authors used rigorous psychometric methods to develop and assess the reliability and validity of the measure, and both scales were found to have good internal consistency reliability (Cronbach α values of 0.80 and 0.79 for the transplant knowledge and CKD knowledge scales, respectively) (10). The inclusion of the CKD knowledge scale to assess disease knowledge among patients in earlier stages of their disease could enable clinicians and researchers to use interventions sooner to positively affect disease and treatment trajectories. This is well aligned with recent policy directives and practice recommendations aimed at helping patients plan for life with kidney disease. A major strength of this study was the validation of KART 2.0 in a more diverse patient population than the original version, including patients for whom English is not their primary language and patients with less advanced CKD (10). Importantly, KART 2.0 “demonstrated measurement equivalence” across patients with diverse racial and ethnic, socioeconomic status, health literacy, and primary language backgrounds (10). Hence, KART 2.0 is an excellent tool to assess interventions designed to remediate inequities for the CKD and kidney failure populations.

However, use of KART 2.0 should be considered within the context of its limitations. Primarily, the study population used to test the scale, although racially and ethnically diverse, was not representative of the CKD and kidney failure populations in the United States. Additionally, the study population comprised patients from within the Southern California Kaiser Permanente health system who had access to health insurance, including primary care, and were already under the care of a nephrologist. Thus, given what we know about the low rates of CKD awareness and the large proportion of patients who lack prekidney failure nephrology care in the United States, the study population examined likely had more CKD and transplant knowledge at baseline compared with most CKD and kidney failure populations. Nevertheless, mean scores from participants on both knowledge scales were relatively low (4.2 of 16 on the transplant knowledge scale and 5.2 of nine on the CKD knowledge scale) (10), suggesting that most participants had limited CKD and transplant knowledge at baseline. Additionally, three quarters of the study population had CKD stage 3 or 4, and it is unclear how many had been referred, evaluated, or listed for transplant; thus, many patients likely had not received detailed transplant education covering some of the items in the scale (e.g., risk of skin cancer post-transplant). An additional limitation is that the CKD knowledge scale does not include items that assess knowledge related to risk factors for the development of CKD. This limitation represents an opportunity for the development and validation of additional measures targeted to patients in earlier stages of CKD (i.e., stages 1–3) aimed at assessing knowledge of disease prevention and risk factors.

KART 2.0 is an important and valuable addition to the small but growing toolbox of validated measures targeted to patients with kidney disease. Its utility is far reaching and can be integrated into a variety of settings and contexts, including to assess intervention effectiveness and quality improvement projects, as well as by individual clinicians in primary care and nephrology settings to evaluate patient knowledge of disease and transplant education. Going forward, it will be important to test if KART 2.0 can be used as a tool to predict outcomes relevant to increasing parity for patients with kidney failure, including pursuit and receipt of deceased or living donor transplant among patients with documented disparate access. It will also be important to validate the scale in other geographic regions and among patients who more closely resemble the racial, ethnic, and socioeconomic characteristics of the US kidney disease population.

Although it is essential to identify patients with limited knowledge about kidney failure and treatment options so that comprehensive education can be targeted to patients who need further education, it is also critical that interventions and quality improvement initiatives using KART 2.0 to address equity in access to information recognize the importance of the multilevel, upstream influences on and barriers to the provision of disease- and transplant-related education. Specifically, the causes of low knowledge scores on KART 2.0 likely reflect not only the need for additional patient education but also the important influence of social determinants of health throughout the life course of an individual. Interventions that aim to improve patient knowledge using KART 2.0 as an end point should consider the underlying mechanisms and fundamental causes that contribute to both low knowledge and the specific health outcome or access to treatment targeted. Although measuring knowledge using KART 2.0 to help identify educational needs will have an important effect on individual patients with or approaching kidney failure, there is a need to intervene at other levels to have a population health effect, and health care interactions between patients and providers represent only a small component of public health (Figure 1). For example, interventions that address social determinants of health, which are ubiquitous across society, are likely to have the largest population health effect on increasing knowledge of kidney disease and transplantation (11). Comprehensive interventions to increase knowledge of CKD and transplantation should occur at multiple levels, and KART 2.0 holds promise to improve kidney disease and transplant knowledge for both individuals and populations.

Figure 1.

Example interventions to increase kidney disease and transplant knowledge among individuals and populations. Knowledge Assessment of Renal Transplantation (KART) 2.0 can be applied at each intervention level depicted. (1) At the first level, KART 2.0 can be used by providers in 1:1 or group education programs to assess patient knowledge. (2) At the second level, KART 2.0 is deployed at a practice level and can be used by all providers within a particular clinic. (3) KART 2.0 can be a required preventive intervention and used to assess educational deficits at certain junctures (e.g., annually for patients with late-stage CKD). (4) KART 2.0 can be used to make assessments on a population level to benchmark clinical practices. (5) Finally, at level 5, addressing population-level social determinants of health could have the most effect in improving knowledge.

Disclosures

R.E. Patzer reports serving on the editorial boards of American Journal of Transplantation and CJASN and as chair of the United Network for Organ Sharing Data Advisory Board. R.E. Patzer is supported by National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) grants R01DK122701 and R01DK114891 and National Institute on Minority Health and Health Disparities (NIMHD) grants R01MD011682 and U01MD010611. R.E. Patzer’s spouse reports ownership interest in Vital Software. M.A. Urbanski reports serving as an editorial board member of Journal of Nephrology Social Work. M.A. Urbanski is supported by Georgia Clinical and Translational Science Alliance grant UL1TR002378.

Funding

M.A. Urbanski is supported by Georgia Clinical and Translational Science Alliance grant TL1TR002382.

Author Contributions

R.E. Patzer and M.A. Urbanski conceptualized the study; R.E. Patzer provided supervision; R.E. Patzer and M.A. Urbanski wrote the original draft; and R.E. Patzer and M.A. Urbanski reviewed and edited the manuscript.