Supporting Patient-Centered Pregnancy Counseling in Nephrology Care: A Semistructured Interview Study of Patients and Nephrologists.

Introduction: Individuals with chronic kidney disease (CKD) are at increased risk of adverse pregnancy outcomes and are susceptible to disempowerment and decisional burden when receiving reproductive counseling and considering pregnancy. Nephrologists do not frequently counsel about reproductive health, and no tools exist to support patient-centered reproductive counseling for those with CKD. Methods: A total of 30 patients aged 18 to 45 years with CKD stages 1 to 5 who were assigned female sex at birth and 12 nephrologists from a single academic medical center participated in semistructured qualitative interviews. They were asked about information needs, decision support needs, and facilitators and barriers to reproductive health care and counseling. Thematic analysis was performed. Results: The following 4 main themes were identified: (i) assessing reproductive intentions; (ii) information about reproductive health and kidney disease; (iii) reproductive risk; and (iv) communication and decision-making needs. Patients' reproductive intentions varied over time and shaped the content of information needed from nephrologists. Patients and nephrologists both felt that risk communication could be improved but focused on different aspects to improve the quality of this counseling; nephrologists focused on providing individualized risk estimates and patients focused on balancing risks with benefits and management. Patients desired nephrologists to bring up the topic of reproductive health and counseling in kidney clinic, and this is not frequently or systematically done currently. Conclusion: This work highlights a critical need for more dialog about reproductive health in kidney care, identified differences in what patients and nephrologists think is important in communication and decision-making, and provides an important step in developing patient-centered reproductive counseling tools in nephrology.

Patient Electronic Health Record Portal Use and Patient-Centered Outcomes in CKD.

RATIONALE & OBJECTIVE: Electronic health record portals are increasingly emphasized in chronic kidney disease (CKD). However, associations of portal use with clinical and patient-centered outcomes remain unknown. STUDY DESIGN: Cross-sectional survey (April 2015 to March 2018). SETTING & PARTICIPANTS: Nondialysis patients with CKD from nephrology clinics within 1 academic medical center. EXPOSURES: Patient demographics (age, sex, race, ethnicity, education, and income), kidney function. OUTCOMES: Association between portal use as an outcome and exposures. Additionally, associations of portal use and patient demographics with 4 patient-centered outcomes (CKD-specific knowledge, stress, and 2 self-ratings of health). ANALYTIC APPROACH: Logistic regression to examine associations between patient portal use, demographics, and kidney function. Linear regression to examine associations between portal use and patient-centered outcomes. RESULTS: Of 245 participants, mean age was 60 ± 17 (SD) years, 182 (77%) were White, 121 (49%) were women, 230 (96%) had a high school education or higher, and 96 (45%) had <$50,000 annual income. Examining portal use, 159 (65%) used the portal as follows: checking laboratory test results, 157 (99%); managing appointments, 133 (84%); messaging providers, 131 (82%); viewing medical history, 127 (80%); reviewing educational resources, 113 (71%); and renewing prescriptions, 98 (62%). African Americans (OR, 0.34; 95% CI, 0.16-0.72 vs White patients), patients with less formal education (OR, 0.06; 95% CI, 0.01-0.36), and those with lower income (OR, 0.28; 95% CI, 0.13-0.60; and OR, 0.26; 95% CI, 0.12-0.54 comparing income < $25,000 and $25,000-$50,000, respectively, with ≥$50,000) had lower odds of using the portal. In adjusted analysis, only lower income predicted lower portal use. Examining patient-centered outcomes in univariable analysis, portal users had higher knowledge (ß = 4.89; P = 0.02), higher ratings of current health (ß = 0.28; P = 0.03), and lower CKD-related stress (ß = -0.18; P = 0.05). In adjusted analysis, only patient demographics and/or kidney function remained independent predictors of patient-centered outcomes. LIMITATIONS: Cross-sectional study design, cannot determine causality. CONCLUSIONS: Interventions are needed to ensure that all patients have access to portals to mitigate disparities in care.

The Relationship of Disease-Specific Knowledge and Health Literacy With the Uptake of Self-Care Behaviors in CKD.

INTRODUCTION: Individuals with chronic kidney disease (CKD) generally have poor participation in self-care. We hypothesized that greater kidney disease knowledge and health literacy would associate with better self-care. METHODS: We enrolled 401 participants with non-dialysis-dependent CKD from one academic center in this cross-sectional study. Validated surveys were used to assess health literacy level (inadequate vs. adequate; Rapid Estimate of Adult Literacy in Medicine), perceived kidney disease knowledge (Perceived Kidney Disease Knowledge Survey [PiKS]), objective kidney disease knowledge (Kidney Disease Knowledge Survey [KiKS]), and a CKD self-care measure was constructed as the sum of self-reported self-care behaviors using the adapted Summary of Diabetes Self-Care Activities Assessment. The association between health literacy level, PiKS scores, KiKS scores, and the CKD self-care measure was assessed with multivariable adjusted linear regression models. RESULTS: Participants had a mean age of 57 years and 17.7% had inadequate health literacy. PiKS scores were positively associated with the CKD self-care measure (ß = 1.05, 95% confidence interval [CI] 0.50-1.63), and a positive trend was observed for KiKS scores and the CKD self-care measure (ß = 0.30, 95% CI: -0.12 to 0.72). Health literacy was not associated with CKD self-care measure. CONCLUSION: Objective kidney disease knowledge is likely necessary, but not sufficient for self-care and may depend on the level of health literacy. Perceived kidney knowledge may offer a novel target to assess patients at risk for poor self-care, and be used in targeted educational interventions.

Longitudinal Evolution of Markers of Mineral Metabolism in Patients With CKD: The Chronic Renal Insufficiency Cohort (CRIC) Study.

RATIONALE & OBJECTIVE: The pathogenesis of disordered mineral metabolism in chronic kidney disease (CKD) is largely informed by cross-sectional studies of humans and longitudinal animal studies. We sought to characterize the longitudinal evolution of disordered mineral metabolism during the course of CKD. STUDY DESIGN: Retrospective analysis nested in a cohort study. SETTING & PARTICIPANTS: Participants in the Chronic Renal Insufficiency Cohort (CRIC) Study who had up to 5 serial annual measurements of estimated glomerular filtration rate, fibroblast growth factor 23 (FGF-23), parathyroid hormone (PTH), serum phosphate, and serum calcium and who subsequently reached end-stage kidney disease (ESKD) during follow-up (n = 847). EXPOSURE: Years before ESKD. OUTCOMES: Serial FGF-23, PTH, serum phosphate, and serum calcium levels. ANALYTICAL APPROACH: To assess longitudinal dynamics of disordered mineral metabolism in human CKD, we used "ESKD-anchored longitudinal analyses" to express time as years before ESKD, enabling assessments of mineral metabolites spanning 8 years of CKD progression before ESKD. RESULTS: Mean FGF-23 levels increased markedly as time before ESKD decreased, while PTH and phosphate levels increased modestly and calcium levels declined minimally. Compared with other mineral metabolites, FGF-23 levels demonstrated the highest rate of change (velocity: first derivative of the function of concentration over time) and magnitude of acceleration (second derivative). These changes became evident approximately 5 years before ESKD and persisted without deceleration through ESKD onset. Rates of changes in PTH and phosphate levels increased modestly and without marked acceleration around the same time, with modest deceleration immediately before ESKD, when use of active vitamin D and phosphate binders increased. LIMITATIONS: Individuals who entered the CRIC Study at early stages of CKD and who did not progress to ESKD were not studied. CONCLUSIONS: Among patients with progressive CKD, FGF-23 levels begin to increase 5 years before ESKD and continue to rapidly accelerate until transition to ESKD.

Provider perspectives on chronic kidney disease diagnosis delivery
.

AIMS: Lack of clear provider communication has been suggested as a reason for low patient awareness of their chronic kidney disease (CKD) diagnosis. Using quality improvement methods, we performed one-on-one provider interviews about CKD diagnosis delivery. MATERIALS AND METHODS: Interviews were audio-recorded, transcribed, and examined using mixed methods. We used thematic analysis to code and analyze transcripts, and Fisher's exact test to examine differences comparing nephrologist and primary care provider (PCP) perspectives. RESULTS: 24 providers completed interviews (18 nephrologists, 6 PCPs). Four themes emerged (N = 260 statements): 1) perspectives informing patients about CKD diagnosis (37 statements), 2) timing of diagnosis messaging (38 statements), 3) language used to convey diagnosis (42 statements), and 4) challenges in diagnosis delivery (143 statements). Most agreed that patients should be informed of their CKD (87.5%), but only 76% believed that communication should occur early. Terminology was not unified; half of nephrology providers used the term "Chronic Kidney Disease" to explain diagnosis. No PCPs used this terminology. Challenges to CKD diagnosis delivery included: Kidney disease is perceived as difficult to explain, lack of provider time, lack of patient symptoms, patient denial of disease, and low public awareness of CKD. CONCLUSIONS: Providers' views on informing patients of their CKD diagnosis were not unified, in particular with respect to timing and terminology of diagnosis delivery. More work is needed to address barriers to efficiently and effectively convey CKD diagnosis information.
.

Learning to live with nephrotic syndrome: experiences of adult patients and parents of children with nephrotic syndrome.

Background: People living with nephrotic syndrome (NS) need to develop an in-depth understanding of their condition in order to participate in treatment decisions, develop self-management skills and integrate illness into daily life. However, the learning needs of adult patients and parents of children with NS are unknown. We therefore explored patient and parent perspectives on learning needs related to NS as part of a larger study to develop a shared learning tool for NS. Methods: Qualitative data were collected using semistructured focus groups and individual interviews with adult patients (n = 22) and parents of children with NS (n = 25). Results: The complexity of NS and its treatment made decision making challenging, as patients/parents often had to assimilate information about a condition that is poorly understood. Specific informational needs related to understanding the diagnosis and treatment approaches as well as learning to manage NS were identified. Difficulty in getting accurate information often made learning challenging. The importance of learning to monitor their condition, including understanding triggers that might precipitate a relapse, was highlighted, underscoring the need for individualized approaches to ensure unique learning needs are addressed. Conclusions: Our findings reveal some of the unique concerns of people with NS given its uncertain course and the limited information available specific to NS. These results suggest the need for shared communication between the patient/parents and providers to elicit the patient's/parents' understanding of NS and to support them in meeting their unique learning needs.

Continuous quality improvement in nephrology: a systematic review.

BACKGROUND: Continuous quality improvement (CQI) has been successfully applied in business and engineering for over 60 years. While using CQI techniques within nephrology has received increased attention, little is known about where, and with what measure of success, CQI can be attributed to improving outcomes within nephrology care. This is particularly important as payors' focus on value-based healthcare and reimbursement is tied to achieving quality improvement thresholds. We conducted a systematic review of CQI applications in nephrology. METHODS: Studies were identified from PubMed, MEDLINE, Scopus, Web of Science, CINAHL, Google Scholar, ProQuest Dissertation Abstracts and sources of grey literature (i.e., available in print/electronic format but not controlled by commercial publishers) between January 1, 2004 and October 13, 2014. We developed a systematic evaluation protocol and pre-defined criteria for review. All citations were reviewed by two reviewers with disagreements resolved by consensus. RESULTS: We initially identified 468 publications; 40 were excluded as duplicates or not available/not in English. An additional 352 did not meet criteria for full review due to: 1. Not meeting criteria for inclusion = 196 (e.g., reviews, news articles, editorials) 2. Not nephrology-specific = 153, 3. Only available as abstracts = 3. Of 76 publications meeting criteria for full review, the majority [45 (61%)] focused on ESRD care. 74% explicitly stated use of specific CQI tools in their methods. The highest number of publications in a given year occurred in 2011 with 12 (16%) articles. 89% of studies were found in biomedical and allied health journals and most studies were performed in North America (52%). Only one was randomized and controlled although not blinded. CONCLUSIONS: Despite calls for healthcare reform and funding to inspire innovative research, we found few high quality studies either rigorously evaluating the use of CQI in nephrology or reporting best practices. More rigorous research is needed to assess the mechanisms and attributes by which CQI impacts outcomes before there is further promotion of its use for improvement and reimbursement purposes.