Putting patients at the center of kidney care transitions: PREPARE NOW, a cluster randomized controlled trial.

Care for patients transitioning from chronic kidney disease to kidney failure often falls short of meeting patients' needs. The PREPARE NOW study is a cluster randomized controlled trial studying the effectiveness of a pragmatic health system intervention, 'Patient Centered Kidney Transition Care,' a multi-component health system intervention designed to improve patients' preparation for kidney failure treatment. Patient-Centered Kidney Transition Care provides a suite of new electronic health information tools (including a disease registry and risk prediction tools) to help providers recognize patients in need of Kidney Transitions Care and focus their attention on patients' values and treatment preferences. Patient-Centered Kidney Transition Care also adds a 'Kidney Transitions Specialist' to the nephrology health care team to facilitate patients' self-management empowerment, shared-decision making, psychosocial support, care navigation, and health care team communication. The PREPARE NOW study is conducted among eight [8] outpatient nephrology clinics at Geisinger, a large integrated health system in rural Pennsylvania. Four randomly selected nephrology clinics employ the Patient Centered Kidney Transitions Care intervention while four clinics employ usual nephrology care. To assess intervention effectiveness, patient reported, biomedical, and health system outcomes are collected annually over a period of 36 months via telephone questionnaires and electronic health records. The PREPARE NOW Study may provide needed evidence on the effectiveness of patient-centered health system interventions to improve nephrology patients' experiences, capabilities, and clinical outcomes, and it will guide the implementation of similar interventions elsewhere. TRIAL REGISTRATION: NCT02722382.

Life Options Patient Opinion Study identifies keys to a long life for dialysis patients.

Results of a recent survey of 31 people on dialysis show that, initially, most of them had no real expectation of living a long life when they started treatment. How and why have their perceptions changed? What can providers and other patients learn from this Life Options Patient Opinion Study? For people on dialysis, rehabilitation means living long and living well, despite the challenges of kidney disease. The first step to successful renal rehabilitation is ensuring that the clinical prerequisites of anemia control, adequate dialysis, a well-functioning vascular access, and proper nutrition are in place. In addition, research indicates that people on dialysis are more likely to experience positive outcomes and better quality of life when they are informed about their disease and its treatments; have solid support systems; exercise regularly and remain active and productive, and engage in self-care. It is the combination of good clinical care plus rehabilitation management that can help dialysis patients return to active and fulfilling lives. In 1993 the Life Options Rehabilitation Advisory Council (LORAC) developed a comprehensive approach to renal rehabilitation, based on the "5E's:" Encouragement, Education, Exercise, Employment, and Evaluation. Since then, the 5E's have served as the basis for numerous activities of the Life Options Rehabilitation Program. The Patient Opinion Study examined the patient experience as a way to begin identifying the keys to a long life on dialysis.

Home hemodialysis: survival, quality of life, and rehabilitation.

Choice of treatment modality for patients with end-stage renal disease ideally should not only increase the chances of survival but also improve quality of life and facilitate rehabilitation goals. These goals include employment, enhanced physical functioning, improved understanding of dialysis, increased control, and resumption of activities enjoyed before dialysis. Home hemodialysis has been consistently associated with improved long-term patient survival and quality of life compared with patients treated with in-center hemodialysis or peritoneal dialysis. Home hemodialysis is also well suited to rehabilitation. Home hemodialysis training programs educate patients and partners to become responsible for dialysis treatments, thus encouraging independence and permitting flexible scheduling, which promotes greater participation in exercise and employment. Further information about modality choice and rehabilitation outcomes could be obtained by systematic data collection to enable comparisons between modalities. Patients should have the opportunity to choose from among all modalities, including home hemodialysis.