Research Article: What do the US advanced kidney disease patients want? Comprehensive pre-ESRD Patient Education (CPE) and choice of dialysis modality

Date Published: April 9, 2019

Publisher: Public Library of Science

Author(s): Ashutosh M. Shukla, Colin Hinkamp, Emma Segal, Tezcan Ozrazgat Baslanti, Teri Martinez, Michelle Thomas, Ramya Ramamoorthy, Shahab Bozorgmehri, Xu-jie Zhou.


Improvement in Home Dialysis (HoD) utilizations as a mean to improve the patient reported and health services outcomes, has been a long-held goal of the providers and healthcare system in United States. However, measures to improve HoD rates have yielded limited success so far. Lack of patient awareness of chronic kidney disease (CKD) and its management options, is one of the important barriers against patient adoption of HoD. Despite ample evidence that Comprehensive pre-ESERD Patient Education (CPE) improves patient awareness and informed HoD choice, use of CPE among US advanced CKD patients is low. Need for significant resources, lack of validated data showing unequivocal and reproducible benefits, and the lack of validated CPE protocols proven to have consistent efficacy in improving not only patient awareness but also HoD rates in US population, are major limitations deterring adoption of CPE in routine clinical practice. We recently demonstrated that if a structured, protocol based CPE is integrated within the routine nephrology care for patients with advanced CKD, it substantially improves informed HoD choice and utilizations. However, this requires establishing CPE resources within each nephrology practice. Efficacy of a stand-alone CPE model, independent of clinical care, has not been examined till date. In this report we report the efficacy of our structured CPE protocol, delivered outside the realm of routine nephrology care—as a stand-alone patient education program, in a geographically distant region, and show that: when provided opportunity for informed dialysis choice, a majority of advanced CKD patients in US would prefer HoD. We also show that initiating CPE leads to accelerated growth in HoD utilizations and reduces disparities in HoD utilizations, goals for system improvements. Finally, the reproducibility of our structured CPE protocol with consistent efficacy data suggest that initiating such programs at institutional levels has the potential to improve informed dialysis selection and HoD rates across any similar large healthcare institute within US.

Partial Text

Home dialysis (HoD) is grossly underutilized for the management of end stage renal disease (ESRD) in US. Due to equivalence in survivals, and trends for better patient-oriented and health services outcomes, i.e. health related quality of life, patient satisfaction, cost of care, etc., major ESRD stakeholders including physicians, payors and policy makers, have advocated increasing the HoD use in US.[1–6] Despite these agreements the growth of HoD in US over last decade has been slow.[7]

This is a retrospective-prospective analysis of the first 18 months of a newly established CPE clinic at University of Florida (UF). Once enrolled the patients were followed prospectively for their need, and modality of dialysis. The data were extracted from the UF Health electronic medical records after the appropriate approvals from the IRB 01, University of Florida Institutional Review Board, Gainesville Health Science Center.

Table 1 shows the demographic distribution of the entire cohort with reference to their dialysis modality selections.

Despite near universal agreements among various ESRD stakeholders and a number of position papers and policy changes targeting greater informed HoD utilizations, growth of HoD in US has been slow and difficult to achieve.[7] It is well established through numerous international studies that CPE, in addition to improving many aspects of CKD care, improves patient awareness and increases informed HoD choice with reported rates for HoD, over 50% among those receiving the education.[3, 6, 14–16] Yet, few in US provide CPE, universally to all of their advanced CKD patients. A recent USRDS analysis of CMS billing database showed that Kidney Disease Education services are billed in less than 2% of the eligible population. [21]




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