Patient reported measures (PRMs), including patient-reported outcomes, play a critical role in dialysis care. The usage of PRMs is extensive in dialysis clinics. While there are excellent PRMs to choose from, and their implementation as part of quality improvement and performance monitoring is extensive, there are still methodological challenges to be addressed. In this paper, we identify key methodological concerns around use of PRMs in dialysis centers in the United States and make recommendations for improving the use of PRMs in dialysis related to Selection of PRMs, Mode of Administration, and Support for PRM Use. These recommendations include: (1) Continue the use of Kidney Disease Quality of Life 36-item survey (KDQOL™-36) for dialysis centers' internal quality improvement activities and the In-Center Hemodialysis Consumer Assessment of Health Care Providers and Systems (ICH-CAHPS survey®) for public dialysis center performance monitoring, but promote efforts to modify these instruments by incorporating PROMIS general health items (KDQOL-36) and reducing the length of the ICH-CAHPS. (2) Adopt a PRM of whether dialysis patients have been informed about all dialysis and transplant options. (3) Evaluate equivalence between electronic and paper versions of PRMs prior to widespread use of electronic administration. (4) Explore reimbursement of costs of PRM administration by the Centers for Medicare and Medicaid Services and kidney organizations. (5) Continue development of provider trainings in PRM administration and interpretation. These recommendations will help dialysis care decision-makers, clinicians, and applied researchers take the next steps toward enhancing PRM use in dialysis.

Purpose

End-stage renal disease patients' experience of care is an integral part of the assessment of the quality of the care provided at hemodialysis centers and is needed to promote patient choice, quality improvement, and accountability. The purpose of this study is to evaluate the In-Center Hemodialysis Consumer Assessment of Healthcare Providers and Systems (ICH-CAHPS®) survey and its equivalence in different age, gender, race, and education subgroups.

Methods

The ICH-CAHPS survey was administered to 1454 patients from 32 dialysis facilities. For the characteristics compared, the sample had 756 participants younger than 65 years old, 739 men, 516 Black, 567 White, and 970 with less than high school diploma. Three different patient experience constructs were studied including nephrologist's communication and caring, quality of care and operations, and providing information to patients. We used item response theory analysis to examine the possibility of differential item functioning (DIF) by patient age, gender, race, and education separately after controlling for the other DIF characteristics and additional confounding variables including survey mode, mental, and general health status as well as duration on dialysis.

Results

The three constructs studied were unidimensional and no major DIF was observed on the composites. Some non-equivalences were observed when confounders were not controlled for, suggesting that such covariates can be important factors in understanding the possibility of disparity in patients' experience.

Conclusions

The ICH-CAHPS is a promising survey to elicit hemodialysis patients' experience that has good psychometric properties and provides a standardized tool for assessing age, gender, race, or education disparity.

A promising strategy for increasing living donor kidney transplant (LDKT) rates is improving education about living donation for both prospective kidney transplant recipients and living donors to help overcome the proven knowledge, psychological, and socioeconomic barriers to LDKT. A recent Consensus Conference on Best Practices in Live Kidney Donation recommended that comprehensive LDKT education be made available to patients at all stages of chronic kidney disease (CKD). However, in considering how to implement this recommendation across different healthcare learning environments, the current lack of available guidance regarding how to design, deliver, and measure the efficacy of LDKT education programs is notable. In the current article, we provide an overview of how one behavior change theory, the Transtheoretical Model of Behavior Change, can guide the delivery of LDKT education for patients at various stages of CKD and readiness for LDKT. We also discuss the importance of creating educational programs for both potential kidney transplant recipients and living donors, and identify key priorities for educational research to reduce racial disparities in LDKT and increase LDKT rates.

Purpose

Black dialysis patients report better health-related quality of life (HRQOL) than White patients, which may be explained if Black and White patients respond systematically differently to HRQOL survey items.

Methods

We examined differential item functioning (DIF) of the Kidney Disease Quality of Life 36-item (KDQOL^TM-36) Burden of Kidney Disease, Symptoms and Problems with Kidney Disease, and Effects of Kidney Disease scales between Black (n = 18,404) and White (n = 21,439) dialysis patients. We fit multiple group confirmatory factor analysis models with increasing invariance: a Configural model (invariant factor structure), a Metric model (invariant factor loadings), and a Scalar model (invariant intercepts). Criteria for invariance included non-significant χ² tests, > 0.002 difference in the models' CFI, and > 0.015 difference in RMSEA and SRMR. Next, starting with a fully invariant model, we freed loadings and intercepts item-by-item to determine if DIF impacted estimated KDQOL^TM-36 scale means.

Results

ΔCFI was 0.006 between the metric and scalar models but was reduced to 0.001 when we freed intercepts for the burdens and symptoms and problems of kidney disease scales. In comparison to standardized means of 0 in the White group, those for the Black group on the Burdens, Symptoms and Problems, and Effects of Kidney Disease scales were 0.218, 0.061, and 0.161, respectively. When loadings and thresholds were released sequentially, differences in means between models ranged between 0.001 and 0.048.

Conclusion

Despite some DIF, impacts on KDQOL^TM-36 responses appear to be minimal. We conclude that the KDQOL^TM-36 is appropriate to make substantive comparisons of HRQOL between Black and White dialysis patients.

A recent article in the journal reported analyses of KDQOL-36™ survey data collected from 240,343 adults (330,412 surveys) dialyzed at a large dialysis organization in the United States during 2014-2016. The authors concluded that the KDQOL-36™ Symptoms and Problems of Kidney Disease scale had the highest mean score of the KDQOL-36™ scales. We note that this inference was erroneous because the scales are not scored on the same numeric scale. In addition, the authors found that responses to a general health perceptions item ("In general, would you say your health is excellent, very good, good, fair, or poor") was not significantly associated with any of the 5 KDQOL-36 scale scores. In contrast, we find significant and noteworthy correlations in two other datasets. These analytic issues call into question the accuracy and validity of the conclusions of this paper.

Background

The Centers for Medicare & Medicaid Services require that dialysis patients' health-related quality of life be assessed annually. The primary instrument used for this purpose is the Kidney Disease Quality of Life 36-Item Short-Form Survey (KDQOL-36), which includes the SF-12 as its generic core and 3 kidney disease-targeted scales: Burden of Kidney Disease, Symptoms and Problems of Kidney Disease, and Effects of Kidney Disease. Despite its broad use, there has been limited evaluation of KDQOL-36's psychometric properties.

Study design

Secondary analyses of data collected by the Medical Education Institute to evaluate the reliability and factor structure of the KDQOL-36 scales.

Settings & participants

KDQOL-36 responses from 70,786 dialysis patients in 1,381 US dialysis facilities that permitted data analysis were collected from June 1, 2015, through May 31, 2016, as part of routine clinical assessment.

Measurements & outcomes

We assessed the KDQOL-36 scales' internal consistency reliability and dialysis facility-level reliability using coefficient alpha and 1-way analysis of variance. We evaluated the KDQOL-36's factor structure using item-to-total scale correlations and confirmatory factor analysis. Construct validity was examined using correlations between SF-12 and KDQOL-36 scales and "known groups" analyses.

Results

Each of the KDQOL-36's kidney disease-targeted scales had acceptable internal consistency reliability (α=0.83-0.85) and facility-level reliability (r=0.75-0.83). Item-scale correlations and a confirmatory factor analysis model evidenced the KDQOL-36's original factor structure. Construct validity was supported by large correlations between the SF-12 Physical Component Summary and Mental Component Summary (r=0.40-0.52) and the KDQOL-36 scale scores, as well as significant differences on the scale scores between patients receiving different types of dialysis, diabetic and nondiabetic patients, and patients who were employed full-time versus not.

Limitations

Use of secondary data from a clinical registry.

Conclusions

The study provides support for the reliability and construct validity of the KDQOL-36 scales for assessment of health-related quality of life among dialysis patients.

Background

The best treatment option for end-stage renal disease is usually a transplant, preferably a live donor kidney transplant (LDKT). The most effective ways to educate kidney transplant candidates about the risks, benefits, and process of LDKT remain unknown.

Methods/design

We report the protocol of the Enhancing Living Donor Kidney Transplant Education (ELITE) Study, a cluster randomized trial of an educational intervention to be implemented during initial transplant evaluation at a large, suburban U.S. transplant center. Five hundred potential transplant candidates are cluster randomized (by date of visit) to receive either: (1) standard-of-care ("usual") transplant education, or (2) intensive education that is based upon the Explore Transplant series of educational materials. Intensive transplant education includes viewing an educational video about LDKT, receiving print education, and meeting with a transplant educator. The primary outcome consists of knowledge of the benefits, risks, and process of LDKT, assessed one week after the transplant evaluation. As a secondary outcome, knowledge and understanding of LDKT are assessed 3 months after the evaluation. Additional secondary outcomes, assessed one week and 3 months after the evaluation, include readiness, self-efficacy, and decisional balance regarding transplant and LDKT, with differences assessed by race. Although the unit of randomization is the date of the transplant evaluation visit, the unit of analysis will be the individual potential transplant candidate.

Discussion

The ELITE Study will help to determine how education in a transplant center can best be designed to help Black and non-Black patients learn about the option of LDKT.

Trial registration

Clinicaltrials.gov number NCT01261910.

Despite the known benefits of kidney transplant, less than 30% of the 615 000 patients living with end-stage renal disease (ESRD) in the United States have received a transplant. More than 100 000 people are presently on the transplant waiting list. Although the shortage of kidneys for transplant remains a critical factor in explaining lower transplant rates, another important and modifiable factor is patients' lack of comprehensive education about transplant. The purpose of this article is to provide an overview of known best practices from the broader literature that can be used as an evidence base to design improved education for ESRD patients pursuing a kidney transplant. Best practices in chronic disease education generally reveal that education that is individually tailored, understandable for patients with low health literacy, and culturally competent is most beneficial. Effective education helps patients navigate the complex health care process successfully. Recommendations for how to incorporate these best practices into transplant education design are described. Providing more ESRD patients with transplant education that encompasses these best practices may improve their ability to make informed health care decisions and increase the numbers of patients interested in pursuing transplant.