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

Abstract

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.

Fig 1. Dialysis modality choice by the number of CPE clinic visit.

Fig 1 shows the number of CPE clinic patients elected to attend, when provided with an option to decide a follow up visit based on their comfort level for reaching dialysis choice. Each column is further subdivided into the patient choice for the different dialysis modalities with bars representing the proportion of patients reaching the given modality choice.

Fig 2. Impact of CPE on the choice and use of HoD compared to the prevalent USRDS data.

Fig 2 shows the impact of CPE on the selection and use of various renal replacement therapies compared to the concurrent prevalent USRDS data. [27] HHD: Home hemodialysis; PD: peritoneal dialysis; IHD: In-center hemodialysis; RRT: Renal replacement Therapy.

Fig 3. Flow-chart showing patient attendance patterns in a universal CPE program.

* Reflects the no. of patients (%) who initiated renal replacement therapies at the end of the follow up period; CPE: Comprehensive Pre-ESRD patient Education; HoD: Any form of home dialysis; IHD: In-Center Hemodialysis.

Fig 4. Growth of HoD utilization before and after the initiation of CPE program.

Fig 4 represents the HoD utilization before and after the initiation of CPE program. The choice and utilization data in the text represents the initial 18 months study period for which the data is available. The extended 34 month graph is meant to represent the ongoing impact of CPE program on the HoD growth beyond the study period.