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Rationale & Objective Nutrition management can slow the progression of chronic kidney disease (CKD) and help manage complications of CKD, but few individuals with CKD receive medical nutrition therapy before initiating dialysis. This study aimed to identify knowledge, attitudes, experiences, and practices regarding medical nutrition therapy and barriers and facilitators to medical nutrition therapy access for individuals with CKD stages G1-G5 from the perspective of patients and providers. Study Design Cross-sectional study composed of anonymous surveys. Setting & Population Adults with CKD stages G1-G5 and medical providers and registered dietitian nutritionists who regularly see patients with CKD stages G1-G5 were recruited by email using National Kidney Foundation and Academy of Nutrition and Dietetics databases and through the National Kidney Foundation 2019 Spring Clinical Meetings mobile app. Analytical Approach Descriptive analyses and Fisher exact tests were conducted with Stata SE 16. Results Respondents included 348 patients, 66 registered dietitian nutritionists, and 30 medical providers. In general, patients and providers had positive perceptions of medical nutrition therapy and its potential to slow CKD progression and manage complications, and most patients reported interest in a medical nutrition therapy referral. However, there were feasibility concerns related to cost to the patient, lack of insurance coverage, and lack of renal registered dietitian nutritionists. There was low awareness of Medicare no-cost share coverage for medical nutrition therapy across patients and providers. About half the practices did not bill for medical nutrition therapy and those that did reported issues with being paid and low reimbursement rates. Limitations Results may not be generalizable due to the small number of respondents and the potential for self-selection, nonresponse, and social desirability bias. Conclusions Many patients with CKD stages G1-G5 are interested in medical nutrition therapy and confident that it can help with disease management, but there are feasibility concerns related to cost to the patient, insurance coverage, and reimbursement. There are significant opportunities to design and test interventions to facilitate medical nutrition therapy access for patients with CKD stages G1-G5.

BackgroundPatient engagement and patient-centered care are critical in optimally managing patients with end-stage renal disease (ESRD). Understanding patient preferences is a key element of patient-centered care and shared decision making. The objective of this study was to elicit patients’ preferences for the treatment of secondary hyperparathyroidism (SHPT) associated with ESRD using a discrete-choice experiment survey.MethodsClinical literature, nephrologist input, patient-education resources, and a patient focus group informed development of the survey instrument, which was qualitatively pretested before its administration to a broader sample of patients. The National Kidney Foundation invited individuals in the United States with ESRD who were undergoing hemodialysis to participate in the survey. Respondents chose among three hypothetical SHPT treatment alternatives (two medical alternatives and surgery) in each of a series of questions, which were defined by attributes of efficacy (effect on laboratory values and symptoms), safety, tolerability, mode of administration, and cost. The survey instrument included a best-worst scaling exercise to quantify the relative bother of the individual attributes of surgery. Random-parameters logit models were used to evaluate the conditional relative importance of the attributes.ResultsA total of 200 patients with ESRD completed the survey. The treatment attributes that were most important to the respondents were whether a treatment was a medication or surgery and out-of-pocket cost. Patients had statistically significant preferences for efficacy attributes related to symptom management and laboratory values, but placed less importance on the attributes related to mode of administration and side effects. The most bothersome attribute of surgery was the risk of surgical mortality.ConclusionsPatients with ESRD and SHPT who are undergoing hemodialysis understand SHPT and have clear and measurable treatment preferences. These results may help inform clinicians about patients’ preferences regarding treatment options for a common complication of ESRD.Electronic supplementary materialThe online version of this article (doi:10.1186/s12882-017-0665-8) contains supplementary material, which is available to authorized users.