Significance Statement: Reliable, valid, and interpretable patient-reported outcome measures for kidney patients are needed for patient monitoring and use as outcomes in clinical trials. The Kidney Disease Quality of Life 36-item short form survey (KDQOL-36) is often used with patients on dialysis, but improvements are needed to facilitate interpretability of its scores. The authors calculate normative values for the KDQOL-36 scales referenced to the United States dialysis population, which allow comparison of group means and individual scores with national averages, such as by dialysis centers when fulfilling their required annual assessment of patients’ quality of life. The authors also created the KDQOL-36 Summary Score (KSS), a composite of items from the KDQOL-36’s kidney-targeted scales, which may be useful when kidney-targeted health-related quality of life needs to be summarized in a single score. Background: The Kidney Disease Quality of Life 36-item short form survey (KDQOL-36) is a widely used, patient-reported outcome measure for patients on dialysis. Efforts to aid interpretation are needed. Methods: We used a sample of 58,851 dialysis patients participating in the Medical Education Institute (MEI) KDQOL Complete program, and 443,947 patients from the US Renal Data System (USRDS) to develop the KDQOL-36 Summary Score (KSS) for the kidney-targeted KDQOL-36 scales (Burdens of Kidney Disease [BKD], Symptoms and Problems of Kidney Disease [SPKD], and Effects of Kidney Disease [EKD]). We also used the MEI and USRDS data to calculate normative values for the Short Form-12 Health Survey’s Physical Component Summary (PCS) and Mental Component Summary (MCS), and the KDQOL-36’s BKD, SPKD, and EKD scales for the United States dialysis population. We used confirmatory factor analysis (CFA) models for KDQOL-36 kidney-targeted items, evaluated model fit with the comparative fit index (CFI; >0.95 indicates good fit) and root-mean-squared error of approximation (RMSEA; <0.06 indicates good fit), and estimated norms by matching the joint distribution of patient characteristics in the MEI sample to those of the USRDS sample. Results: A bifactor CFA model fit the data well (RMSEA=0.046, CFI=0.990), supporting the KSS (α=0.91). Mean dialysis normative scores were PCS=37.8 and MCS=50.9 (scored on a T-score metric); and KSS=73.0, BKD=52.8, SPKD=79.0, and EKD=74.1 (0–100 possible scores). Conclusions: The KSS is a reliable summary of the KDQOL-36. The United States KDQOL-36 normative facilitate interpretation and incorporation of patient-related outcome measures into kidney disease care.

The importance of patient activation (i.e., the knowledge, skills, and confidence one has in managing one’s own healthcare) in people with long-term conditions, including kidney disease, is growing. Enabling and empowering patients to take a more active role in their health and healthcare is the focus of person-centred care. Patient activation is recognised as a key construct of self-management, as to effectively self-manage a long-term condition, it is required to enable individuals to actively participate in treatment decisions, prevent complications, and manage risk factors. Identifying an individual’s level of activation can help guide and tailor care, and interventions aimed at increasing patient activation may improve patient engagement and health outcomes. In this review, we explore the concepts of patient activation and self-management, the relationship between patient activation and self-management, interventions aimed at improving these, and what these mean to people living with kidney disease.

Optimal care occurs when patients possess the skills, knowledge, and confidence needed to effectively manage their health. Promoting such patient activation in kidney disease care is increasingly being prioritized, and patient activation has recently emerged as central to kidney disease legislative policy in the United States. Two options of the Centers for Medicare and Medicaid Services Kidney Care Choices model—the Kidney Care First option and the Comprehensive Kidney Care Contracting option—now include patient activation as a quality metric; both models specifically name the patient activation measure (PAM) as the patient-reported outcome to use when assessing activation in kidney disease. Because nephrology practices participating in these models will receive capitated payments according to changes in patients’ PAM scores, it is time to more critically evaluate this measure as it applies to patients with kidney disease. In this review, we raise important issues related to the PAM’s applicability to kidney health, review and summarize existing literature that applies this measure to patients with kidney disease, and outline key elements to consider when implementing the PAM into practice and policy. Our aim is to spur further dialogue regarding how to assess and address patient activation in kidney disease to facilitate best practices for supporting patients in the successful management of their kidney health.

Fewer trainees are choosing to pursue nephrology. Only 60.1% of positions filled in the 2018 fellowship Match, which is concerning given the rising prevalence of end-stage kidney disease. Identifying factors influential in career choices is critical to inform focused approaches to recruit qualified applicants. To understand perceptions of nephrology and assess factors influential in specialty choice among early career trainees, an anonymous survey was distributed to upper-level medical students and internal medicine residents at programs identified through the American Association of Medical Colleges (AAMC) and American Medical Association’s Fellowship and Residency Electronic Interactive Database (FREIDA). Of 4199 recipients, 644 (15.3%) participants responded, including 315 upper-level medical students, 308 residents, and three chief residents from 30 institutions. An interest in the subject was the most critical factor in selecting a specialty (92%). Other key factors included a suitable work-life balance (73%), access to mentors (70%), and subject exposure (66%). Lack of interest was the most frequently-cited reason to forgo a nephrology fellowship (79%), followed by concerns regarding remuneration (43%), work-life balance (39%), and subject exposure (32%). In free-text responses, several participants described frustration with managing patients on hemodialysis and desired combined training with specialties such as critical care. Respondents who had considered nephrology at any point cited an interest in physiology or interface with a mentor as key driving factors. A lack of interest in and exposure to the subject, perceptions of poor earning potential and patient nonadherence, and concerns regarding work-life balance were influential in participants’ decisions to forgo nephrology training. Incorporating novel educational tools and broadening the scope of the nephrology elective, highlighting ongoing areas of clinical and research innovation, expanding opportunities for interdisciplinary collaboration and procedural skills, and cultivating strategies to reduce burnout may be useful areas on which to focus future recruitment efforts.