Parent Activation in the Neonatal Intensive Care Unit.

OBJECTIVE: Patient activation is the knowledge, skills, and confidence to manage one's health; parent activation is a comparable concept related to a parent's ability to manage a child's health. Activation in adults is a modifiable risk factor and associated with clinical outcomes and health care utilization. We examined activation in parents of hospitalized newborns observing temporal trends and associations with sociodemographic characteristics, neonate characteristics, and outcomes. STUDY DESIGN: Participants included adult parents of neonates admitted to a level-IV neonatal intensive care unit in an academic medical center. Activation was measured with the 10-item Parent version of the Patient Activation Measure (P-PAM) at admission, discharge, and 30 days after discharge. Associations with sociodemographic variables, health literacy, clinical variables, and health care utilization were evaluated. RESULTS: A total of 96 adults of 64 neonates were enrolled. The overall mean P-PAM score on admission was 81.8 (standard deviation [SD] = 18), 88.8 (SD = 13) at discharge, and 86.8 (SD = 16) at 30-day follow-up. Using linear mixed regression model, P-PAM score was significantly associated with timing of measurement. Higher P-PAM scores were associated with higher health literacy (p = 0.002) and higher in mothers compared to fathers (p = 0.040). There were no significant associations of admission P-PAM scores with sociodemographic characteristics. Parents of neonates who had a surgical diagnosis had a statistically significant (p = 0.003) lower score than those who did not. There were no associations between discharge P-PAM scores and neonates' lengths of stay or other indicators of illness severity. CONCLUSION: Parental activation in the NICU setting was higher than reported in the adult and limited pediatric literature; scores increased from admission to discharge and 30-day postdischarge. Activation was higher in mothers and parents with higher health literacy. Additional larger scale studies are needed to determine whether parental activation is associated with long-term health care outcomes as seen in adults. KEY POINTS: · Little is known about activation in parents of neonates.. · Activation plays a role in health outcomes in adults.. · Larger studies are needed to explore parent activation..

Randomized evaluation of decision support interventions for atrial fibrillation: Rationale and design of the RED-AF study.

BACKGROUND: Shared decision making (SDM) improves the likelihood that patients will receive care in a manner consistent with their priorities. To facilitate SDM, decision aids (DA) are commonly used, both to prepare a patient before their clinician visit, as well as to facilitate discussion during the visit. However, the relative efficacy of patient-focused or encounter-based DAs on SDM and patient outcomes remains largely unknown. We aim to directly estimate the comparative effectiveness of two DA's on SDM observed in encounters to discuss stroke prevention strategies in patients with atrial fibrillation (AF). METHODS: The study aims to recruit 1200 adult patients with non-valvular AF who qualify for anticoagulation therapy, and their clinicians who manage stroke prevention strategies, in a 2x2 cluster randomized multi-center trial at six sites. Two DA's were developed as interactive, online, non-linear tools: a patient decision aid (PDA) to be used by patients before the encounter, and an encounter decision aid (EDA) to be used by clinicians with their patients during the encounter. Patients will be randomized to PDA or usual care; clinicians will be randomized to EDA or usual care. RESULTS: Primary outcomes are quality of SDM, patient decision making, and patient knowledge. Secondary outcomes include anticoagulation choice, adherence, and clinical events. CONCLUSION: This trial is the first randomized, head-to-head comparison of the effects of an EDA versus a PDA on SDM. Our results will help to inform future SDM interventions to improve patients' AF outcomes and experiences with stroke prevention strategies.

Exploring mHealth potential to improve kidney function: secondary analysis of a randomized trial of diabetes self-care in diverse adults.

BACKGROUND: Many individuals living with chronic kidney disease (CKD) have comorbid Type 2 diabetes (T2D). We sought to explore if efficacious interventions that improve glycemic control may also have potential to reduce CKD progression. METHODS: REACH is a text message-delivered self-management support intervention, which focused on medication adherence, diet, and exercise that significantly improved glycemic control in N = 506 patients with T2D. Using data from the trial, we characterized kidney health in the full sample and explored the intervention's effect on change in estimated glomerular filtration rate (eGFR) at 12 months in a subsample of N=271 patients with eGFR data. RESULTS: In a diverse sample with respect to race/ethnicity and socioeconomic status, 37.2% had presence of mild or heavy proteinuria and/or an eGFR < 60 mL/min/1.73 m2. There was a trending interaction effect between intervention and presence of proteinuria at baseline (b = 6.016, p = .099) such that patients with proteinuria at baseline who received REACH had less worsening of eGFR. CONCLUSIONS: Future research should examine whether diabetes directed self-management support reduces CKD progression in ethnically diverse individuals with albuminuria. In highly comorbid populations, such as T2D and CKD, text-based support can be further tailored according to individuals' multimorbid disease self-management needs and is readily scalable for individuals with limited resources. TRIAL REGISTRATION: This study was registered with ClinicalTrials.gov ( NCT02409329 ).

Peer mentorship to improve outcomes in patients on hemodialysis (PEER-HD): a randomized controlled trial protocol.

BACKGROUND: Patients receiving in-center hemodialysis experience disproportionate morbidity and incur high healthcare-related costs. Much of this cost stems from potentially avoidable hospitalizations. Peer mentorship has been used effectively to improve outcomes for patients with complex chronic diseases. We propose testing the efficacy of peer mentorship on hospitalization rates among patients receiving hemodialysis. METHODS: This is a multicenter parallel group randomized controlled pragmatic trial of patients treated at hemodialysis facilities in Bronx, NY and Nashville, TN. The study has two phases. Phase 1 will enroll and train 16 hemodialysis patients (10 in Bronx, NY and 6 in Nashville TN) to be mentors using a program focused on enhancing self-efficacy, dialysis self-management and autonomy-supportive communication skills. Phase 2 will enroll 200 high risk adults receiving hemodialysis (140 in Bronx, NY and 60 in Nashville, TN), half of whom will be randomized to intervention and half to usual care. Intervention participants are assigned to weekly telephone calls with trained mentors (see Phase 1) for a 3-month period. The primary outcome of Phase 1 will be engagement of mentors with training and change in knowledge scores and autonomy skills from pre- to post-training. The primary outcome of Phase 2 will be the composite count of ED visits and hospitalizations at the end of study follow-up in patient participants assigned to intervention as compared to those assigned to usual care. Secondary outcomes for Phase 2 include the change over the trial period in validated survey scores measuring perception of social support and self-efficacy, and dialysis adherence metrics, among intervention participants as compared to usual care participants. DISCUSSION: The PEER-HD study will test the feasibility and efficacy of a pragmatic peer-mentorship program designed for patients receiving hemodialysis on ED visit and hospitalization rates. If effective, peer-mentorship holds promise as a scalable patient-centered intervention to decrease hospital resource utilization, and by extension morbidity and cost, for patients receiving maintenance in-center hemodialysis. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT03595748 ; 7/23/2018. TRIAL SPONSOR: National Institutes of Diabetes, Digestive and Kidney Disease (NIDDK) 5R18DK118471. FUNDING: Funding for this study was provided by the National Institutes of Diabetes, Digestive and Kidney Disease: R18DK118471. STUDY STATUS: This is an ongoing study and not complete. We are still collecting data for observational follow-up on participants. RELATED ARTICLES: No related articles for this study have been submitted to any journal. The study sponsor and funders had no role in the design, analysis or interpretation of this data. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Impact of pre-dialysis nephrology care engagement and decision-making on provider and patient action toward permanent vascular access.

BACKGROUND: While catheters are often thought the result of emergency hemodialysis (HD) initiation among patients with little or no pre-dialysis nephrology care, the role of patient level of engagement in care and modality decision-making have not been fully explored. METHODS: This is a retrospective medical record review of adults (age 18-89 years) who received care in academically affiliated private practice, public hospital, or Veterans Administration settings prior to initiating HD with a catheter between 10/1/2011 and 9/30/2012. Primary predictors were level of patient engagement in nephrology care within 6 months of HD initiation and timing of modality decision-making. Primary outcomes were provider action (referral) and any patient action (evaluation by a vascular surgeon, vein mapping or vascular surgery) toward [arteriovenous fistula or graft, (AVF/AVG)] creation. RESULTS: Among 92 incident HD patients, 66% (n = 61) initiated HD via catheter, of whom 34% (n = 21) had ideal engagement in care but 42% (n = 25) had no documented decision. Providers referred 48% (n = 29) of patients for AVF/AVG, of whom 72% (n = 21) took any action. Ideal engagement in care predicted provider action (adjusted OR 13.7 [95% CI 1.08, 175.1], p = 0.04), but no level of engagement in care predicted patient action (p > 0.3). Compared to patients with no documented decision, those with documented decisions within 3, 3-12, or more than 12 months before initiating dialysis were more likely to have provider action toward AVF/AVG (adjusted OR [95% CI]: 9.0 [1.4,55.6], p = 0.2, 37.6 [3.3423.4] p = 0.003, and 4.8 [0.8, 30.6], p = 0.1, respectively); and patient action (adjusted OR [95% CI]: 18.7 [2.3, 149.0], p = 0.006, 20.4 [2.6, 160.0], p = 0.004, and 6.2 [0.9, 44.0], p = 0.07, respectively). CONCLUSIONS: Timing of patient modality decision-making, but not level of engagement in pre-dialysis nephrology care, was predictive of patient and provider action toward AVF/AVG Interventions addressing patients' psychological preparation for dialysis are needed.

Measuring Patient Activation as Part of Kidney Disease Policy: Are We There Yet?

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.

Community Racial Composition and Hospitalization Among Patients Receiving In-Center Hemodialysis.

RATIONALE & OBJECTIVE: Community racial composition has been shown to be associated with mortality in patients receiving maintenenance dialysis. It is unclear whether living in communities with predominantly Black residents is also associated with risk for hospitalization among patients receiving hemodialysis. STUDY DESIGN: Retrospective analysis of prospectively collected data from a cohort of patients receiving hemodialysis. SETTING & PARTICIPANTS: 4,567 patients treated in 154 dialysis facilities located in 127 unique zip codes and enrolled in US Dialysis Outcomes and Practice Patterns Study (DOPPS) phases 4 to 5 (2010-2015). EXPOSURE: Tertile of percentage of Black residents within zip code of patients' dialysis facility, defined through a link to the American Community Survey. OUTCOME: Rate of hospitalizations during the study period. ANALYTIC APPROACH: Associations of patient-, facility-, and community-level variables with community's percentage of Black residents were assessed using analysis of variance, Kruskal-Wallis, or χ2/Fisher exact tests. Negative binomial regression was used to estimate the incidence rate ratio for hospitalizations between these communities, with and without adjustment for potential confounding variables. RESULTS: Mean age of study patients was 62.7 years. 53% were White, 27% were Black, and 45% were women. Median and threshold percentages of Black residents in zip codes in which dialysis facilities were located were 34.2% and≥14.4% for tertile 3 and 1.0% and≤1.8% for tertile 1, respectively. Compared with those in tertile 1 facilities, patients in tertile 3 facilities were more likely to be younger, be Black, live in urban communities with lower socioeconomic status, have a catheter as vascular access, and have fewer comorbid conditions. Patients dialyzing in communities with the highest tertile of Black residents experienced a higher adjusted rate of hospitalization (adjusted incidence rate ratio, 1.32; 95% CI, 1.12-1.56) compared with those treated in communities within the lowest tertile. LIMITATIONS: Potential residual confounding. CONCLUSIONS: The risk for hospitalization for patients receiving maintenance dialysis is higher among those treated in communities with a higher percentage of Black residents after adjustment for dialysis care, patient demographics, and comorbid conditions. Understanding the cause of this association should be a priority of future investigation.

Barriers to home dialysis: Unraveling the tapestry of policy.

Home dialysis use as a treatment for end-stage kidney disease varies locally, nationally, and internationally. There is a call to action in the United States to significantly increase access and uptake of home dialysis as the preferred dialysis treatment option. Although most do not object to patient choice in modality selection, the reality is that there are multilevel barriers both obvious and subtle that interfere with expanding home dialysis access. Financial barriers and how payment is structured continue to be key drivers, although new models of care are emerging that include for the first time incentives rather than penalties regarding home dialysis. Resources to support implementation include expert personnel requiring educational training. Policies requiring training curriculum content that is not only specified within nephrology but also for these multidisciplinary providers requisite for successful home dialysis to ensure professional expertise is ready and available, and also to cultivate champions of home modality within the broader nephrology community. Perhaps most importantly, innovation through expanded investment in research is necessary to advance practices, elevate quality, and improve outcomes. Policy in a variety of sectors at local, regional, national, and international levels has the potential to drastically drive expansion and increasing success of home dialysis.

Incorporating patient-reported outcomes (PROs) into dialysis policy: Current initiatives, challenges, and opportunities.

Governments at national and state levels regulate dialysis care in the United States to ensure safe practices, and continually elevate the quality of care. An objective of these regulatory policies is the independent evaluation of dialysis unit outcomes by patients, caregivers, and the community to facilitate choices as well as to advance equal access to high quality dialysis care. These polices recognized decades ago that it was fundamental to include the patient perspective in the assessment and evaluation of dialysis care quality by requiring both individual and aggregate patient reported outcomes (PROs). Although there is support for integrating the patient perspective, concerns persist about the implementation of these polices including selection of PRO measures, administration timing and reach, as well as interpretation of results including benchmarking to permit comparisons across organizations. The experience from the early adoption of PROs into dialysis policies in conjunction with advances in electronic health records, personal data capture and monitoring, and analytics is poised to address these concerns. The dialysis community has the opportunity to lead the way in innovation related to PRO implementation not only in kidney disease care, but also for other healthcare conditions or contexts such as oncology, surgical, and acute care.

Apolipoprotein L1 Testing in African Americans: Involving the Community in Policy Discussions.

BACKGROUND: Apolipoprotein A1 (APOL1) gene variants occurring in people of West African descent contribute to the greater burden of kidney disease among African Americans. These variants are associated with increased risk of nondiabetic nephropathy, more rapid progression of chronic kidney disease, and shorter survival of donor kidneys after transplantation. However, only a minority of people with APOL1-associated risk develops kidney disease and specific clinical measures to address APOL1-associated risk are lacking. Given these uncertainties, we sought to engage members of the African American public in discussions with other stakeholders about the appropriate use of APOL1 testing. METHODS: Formative interviews with community members, researchers, and clinicians in Seattle WA, Nashville TN, and Jackson MS, provided baseline information about views toward APOL1 testing and informed the design of 3 community-based deliberations among African Americans. A national meeting held in March 2018 included 13 community members, 7 scientific advisors and 26 additional researchers, clinicians, bioethicists, patient advocates, and representatives from professional organizations and federal funding agencies. Using small break-out and plenary discussion, the group agreed on recommendations based on current knowledge about APOL1-associated risk. RESULTS: Meeting outcomes included recommendations to develop educational materials about APOL1 for community members and clinicians; to offer APOL1 research results to participants; and on the use of APOL1testing in kidney transplant programs. The group recommended against the routine offer of APOL1 testing in clinical care. Areas of disagreement included whether kidney transplant programs should require APOL1 testing of prospective living donors or bar individuals with APOL1 risk from donating kidneys and whether testing should be available on request in routine clinical care. CONCLUSION: We recommend continued discussion among stakeholders and concerted efforts to ensure active and informed participation of members of the affected community to guide research on APOL1 and kidney disease.

Kidney Disease Awareness and Knowledge among Survivors ofAcute Kidney Injury.

BACKGROUND: Acute kidney injury (AKI) survivors are at risk for chronic kidney disease, recurrent AKI, and cardiovascular disease. The transition from hospital to ambulatory care is an opportunity to reduce these sequelae by launching self-care plans through effective patient education. How well AKI survivors are informationally prepared to apply kidney-specific self-care is unknown. The purpose of this study was to identify awareness and disease-specific knowledge among AKI survivors. METHODS: We performed a cross-sectional survey of AKI-related awareness and knowledge in 137 patients with Kidney Disease Improving Global Outcomes Stage II or III AKI near the time of hospital discharge. Patients were asked (1) "Did you experience AKI while in the hospital?" and (2) "Do you have a problem with your kidney health?" Objective knowledge of AKI was evaluated with a 15-item adapted version of the validated Kidney Knowledge Survey that included topics such as common causes, risk factors, and how AKI is diagnosed. RESULTS: Median age was 54 (interquartile range 43-63) and 81% were white. Eighty percent of patients were unaware that they had experienced AKI and 53% were both unaware they had experienced AKI or had a "problem with their kidneys." Multivariable logistic regression identified being male and lack of nephrology consult as predictors of unawareness with ORs of 3.92 (95% CI 1.48-10.33) and 5.10 (95% CI 1.98-13.13), respectively. Less than 50% recognized nonsteroidal anti-inflammatory drugs, contrast, or phosphate-based cathartics as risk factors for AKI. Two-thirds of patients did not agree that they knew a lot about AKI and more than 80% desired more information. CONCLUSIONS: Most patients with moderate to severe AKI are unaware of their condition, lack understanding of risk factors for recurrent AKI, and desire more information. Patient-centered communication to optimize awareness, understanding, and care will require coordinated educational strategies throughout the continuum of AKI care.

Racial disparities in end-stage renal disease in a high-risk population: the Southern Community Cohort Study.

INTRODUCTION: The Southern Community Cohort Study is a prospective study of low socioeconomic status (SES) blacks and whites from the southeastern US, where the burden of end-stage renal disease (ESRD) and its risk factors are high. We tested whether the 2.4-fold elevated risk of ESRD we previously observed in blacks compared to whites was explained by differences in baseline kidney function. METHODS: We conducted a case-cohort study of incident ESRD cases (n = 737) with stored blood and a probability sampled subcohort (n = 4238) and calculated estimated glomerular filtration rate (eGFR) from serum creatinine. 86% of participants were enrolled from community health centers in medically underserved areas and 14% from the general population in 12 states in the southeastern United States. Incident ESRD after entry into the cohort was ascertained by linkage of the cohort with the US Renal Data System (USRDS). RESULTS: Median (25th, 75th percentile) eGFR at baseline was 63.3 (36.0, 98.2) ml/min/1.73m2 for ESRD cases and 103.2 (86.0, 117.9) for subcohort. Black ESRD cases had higher median (25th, 75th) eGFR [63.3 (35.9, 95.9)] compared to whites [59.1 (39.4, 99.2)]. In multivariable Cox models accounting for sampling weights, baseline eGFR was a strong predictor of ESRD risk, and an interaction with race was detected (P = 0.029). The higher ESRD risk among blacks relative to whites persisted (hazard ratio: 2.58; 95% confidence interval: 1.65, 4.03) after adjustment for eGFR. CONCLUSION: In this predominantly lower SES cohort, the racial disparity in ESRD risk is not explained by differences in baseline kidney function.

Correction to: Health care providers' support of patients' autonomy, phosphate medication adherence, race and gender in end-stage renal disease.

In the original publication of the article, the majority of changes stem from misclassification of "medium adherence" when using the Morisky Medication Adherence Scale (MMAS-8) and not using the correct scoring algorithm for one of the responses when calculating MMAS-8 total scores.

Protein Intake and Long-term Change in Glomerular Filtration Rate in the Jackson Heart Study.

OBJECTIVE: Dietary protein intake could have deleterious renal effects in populations at risk for chronic kidney disease. Here, we examined whether higher protein intake (≥80th percentile of energy from protein) is associated with decline in kidney function and whether this decline varies by diabetes status. DESIGN: Observational cohort study. SUBJECTS AND SETTINGS: Participants were African-Americans (n = 5,301), who enrolled in the Jackson Heart Study between 2000 and 2004. METHODS: Dietary intake was assessed using a validated food-frequency questionnaire at baseline, and serum creatinine was measured at baseline (visit 1) and 8 years later (visit 3). Estimated glomerular filtration rates (eGFRs) at baseline and follow-up were computed using the chronic kidney disease epidemiology collaboration equation. MAIN OUTCOME MEASURE: The change in eGFR was computed by subtracting eGFR at visit 1 from that at visit 3. RESULTS: Of 3,165 participants with complete data, 64% were women, 57% had hypertension, and 19% had diabetes. The median (25th, 75th percentile) percent energy intake from protein was 14.3 (12.4, 16.4), comparable to that reported for the general US population (15% of energy). During a median (25th, 75th percentile) follow-up of 8.0 (7.4, 8.3) years, eGFR declined by 10.5% from a mean (SD) of 97.4 (17.5) to 86.9 (21.3) mL/min/1.73 m2. In the fully adjusted model, consumption of protein as percent of energy intake in lowest and highest quintiles was associated with decline in eGFR among diabetic subjects. The analysis of variance with a robust variance estimator was used to determine whether long-term change in eGFR significantly varies by protein intake. CONCLUSIONS: Our results show that, among African-Americans with diabetes, higher protein intake as a percent of total energy intake is positively associated with greater decline in eGFR in analyses that accounted for risk factors for kidney disease.

Audio-/Videorecording Clinic Visits for Patient's Personal Use in the United States: Cross-Sectional Survey.

BACKGROUND: Few clinics in the United States routinely offer patients audio or video recordings of their clinic visits. While interest in this practice has increased, to date, there are no data on the prevalence of recording clinic visits in the United States. OBJECTIVE: Our objectives were to (1) determine the prevalence of audiorecording clinic visits for patients' personal use in the United States, (2) assess the attitudes of clinicians and public toward recording, and (3) identify whether policies exist to guide recording practices in 49 of the largest health systems in the United States. METHODS: We administered 2 parallel cross-sectional surveys in July 2017 to the internet panels of US-based clinicians (SERMO Panel) and the US public (Qualtrics Panel). To ensure a diverse range of perspectives, we set quotas to capture clinicians from 8 specialties. Quotas were also applied to the public survey based on US census data (gender, race, ethnicity, and language other than English spoken at home) to approximate the US adult population. We contacted 49 of the largest health systems (by clinician number) in the United States by email and telephone to determine the existence, or absence, of policies to guide audiorecordings of clinic visits for patients' personal use. Multiple logistic regression models were used to determine factors associated with recording. RESULTS: In total, 456 clinicians and 524 public respondents completed the surveys. More than one-quarter of clinicians (129/456, 28.3%) reported that they had recorded a clinic visit for patients' personal use, while 18.7% (98/524) of the public reported doing so, including 2.7% (14/524) who recorded visits without the clinician's permission. Amongst clinicians who had not recorded a clinic visit, 49.5% (162/327) would be willing to do so in the future, while 66.0% (346/524) of the public would be willing to record in the future. Clinician specialty was associated with prior recording: specifically oncology (odds ratio [OR] 5.1, 95% CI 1.9-14.9; P=.002) and physical rehabilitation (OR 3.9, 95% CI 1.4-11.6; P=.01). Public respondents who were male (OR 2.11, 95% CI 1.26-3.61; P=.005), younger (OR 0.73 for a 10-year increase in age, 95% CI 0.60-0.89; P=.002), or spoke a language other than English at home (OR 1.99; 95% CI 1.09-3.59; P=.02) were more likely to have recorded a clinic visit. None of the large health systems we contacted reported a dedicated policy; however, 2 of the 49 health systems did report an existing policy that would cover the recording of clinic visits for patient use. The perceived benefits of recording included improved patient understanding and recall. Privacy and medicolegal concerns were raised. CONCLUSIONS: Policy guidance from health systems and further examination of the impact of recordings-positive or negative-on care delivery, clinician-related outcomes, and patients' behavioral and health-related outcomes is urgently required.

The Perceived Medical Condition Self-Management Scale can be applied to patients with chronic kidney disease.

Chronic Kidney Disease (CKD) is a major burden on patients and the health care system. Treatment of CKD requires dedicated involvement from both caretakers and patients. Self-efficacy, also known as perceived competence, contributes to successful maintenance of patient's CKD self-management behaviors such as medication adherence and dietary regulations. Despite a clear association between self-efficacy and improved CKD outcomes, there remains a lack of validated self-report measures of CKD self-efficacy. To address this gap, the Perceived Kidney/Dialysis Self-Management Scale (PKDSMS) was adapted from the previously validated Perceived Medical Condition Self-Management Scale. We then sought to validate this using data from two separate cohorts: a cross-sectional investigation of 146 patients with end-stage renal disease receiving maintenance hemodialysis and a longitudinal study of 237 patients with CKD not receiving dialysis. The PKDSMS was found to be positively and significantly correlated with self-management behaviors and medication adherence in both patient cohorts. The PKDSMS had acceptable reliability, was internally consistent, and exhibited predictive validity between baseline PKDSMS scores and self-management behaviors across multiple time points. Thus, the PKDSMS is a valid and reliable measure of CKD patient self-efficacy and supports the development of interventions enhancing perceived competence to improve CKD self-management.

Patient Experience Assessment is a Requisite for Quality Evaluation: A Discussion of the In-Center Hemodialysis Consumer Assessment of Health Care Providers and Systems (ICH CAHPS) Survey.

Patient experience surveys provide a critical and unique perspective on the quality of patient-centered healthcare delivery. These surveys provide a mechanism to systematically express patients' voice on topics valued by patients to make decisions about choices in care. They also provide an assessment to healthcare organizations about their service that cannot be obtained from any other source. Regulatory agencies have mandated the assessment of patients' experience as part of healthcare value based purchasing programs and weighted the results to account for up to 30% of the total scoring. This is a testimony to the accepted importance of this metric as a fundamental assessment of quality. After more than a decade of rigorous research, there is a significant body of growing evidence supporting specifically the validity and use of the Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys, including a version specific to in-center hemodialysis (ICH CAHPS). This review will focus on the ICH CAHPS survey including a review of its development, content, administration, and also a discussion of common criticisms. Although it is suggested that the survey assesses activities and experiences that are not modifiable by the healthcare organization (or the dialysis facility in our case) emerging evidence suggests otherwise. Dialysis providers have an exclusive opportunity to lead the advancement of understanding the implications and serviceability of the evaluation of the patient experience in health care.

Protocol of a randomized controlled trial of an erythropoietin stimulating agent decision aid for anemia treatment in kidney disease.

BACKGROUND: Erythropoiesis-stimulating agents (ESAs) are commonly used for the treatment of anemia due to chronic kidney disease (CKD) and end stage renal disease (ESRD). Patients often lack an understanding of the potential risks and benefits of ESAs, despite government mandated education on this topic. Decision aids are tools commonly used to discuss important information in health care settings. To address this knowledge gap, we designed this study to evaluate the effectiveness of a novel ESA decision aid at promoting informed shared decision making (ISDM) between patients and providers related to ESA use for CKD- and ESRD-related anemia. METHODS: Using the principles of informed shared decision making theory, we designed and piloted an ESA decision aid intended to increase CKD and ESRD patient understanding of the potential risks and benefits of ESAs. Informed by the findings during development, the ESA decision aid was modified and finalized for testing. We will perform a randomized clinical trial to assess if administration of the ESA decision aid improves patient understanding of the risks and benefits of ESA use compared to control patients receiving standard care. Participants with either CKD or ESRD and who are receiving ESAs will be eligible for participation. The primary outcome is patients' score on the Patient Anemia Knowledge in Kidney Disease (PAKKD) survey assessed at enrollment and 3 months after. Secondary outcomes include decisional conflict related to ESAs, and patient satisfaction with provider communication. DISCUSSION: The Anemia Risk Communication for patients with Kidney Disease (ARC-KD) study will assess the effectiveness of a novel ESA decision aid to improve patient understanding of ESA use to manage CKD- and ESRD-related anemia. This decision aid is the first resource targeted to improve patient understanding of anemia management in the kidney health context. With the increasing options available for anemia management, this will serve as an important foundation to evolve in the future to optimize anemia-related shared decision making. TRIAL REGISTRATION: ClinicalTrials.gov, number NCT01992926 . Registered 11/14/2013.

Dietary polyunsaturated fatty acids and incidence of end-stage renal disease in the Southern Community Cohort Study.

BACKGROUND: Whether polyunsaturated fatty acids (PUFA) are associated with end-stage renal disease (ESRD) in populations with a high burden of risk factors for kidney disease is unknown. We sought to determine whether PUFA intake is associated with ESRD. METHODS: We conducted a nested case-control study of ESRD within the Southern Community Cohort Study (SCCS), a prospective cohort of low-income blacks and whites in the southeastern US (2002-2009). Through 2012, 1,074 incident ESRD cases were identified by linkage with the United States Renal Data System and matched to 3,230 controls by age, sex and race. Dietary intake of total, n-3 or n-6 PUFA was assessed from a validated food frequency questionnaire administered at baseline. Odds ratios (ORs) and 95 % confidence intervals (CIs) were computed from logistic regression models that included matching variables, body mass index, smoking, diabetes, hypertension, education, income, total energy intake and percent energy from protein and saturated fat. RESULTS: The mean (SD) age of participants was 55 (9) years. Most participants were women (55 %), black (87 %), with hypertension (67 %) and on average obtained 8 % of their energy from PUFA. Higher PUFA intake was marginally associated with a lower risk of ESRD in adjusted analyses. The adjusted odds ratios (95 % confidence intervals) for ESRD for the 5th vs. 1st quintile of PUFA were 0.79 (0.60-1.05; P trend = 0.06) for total PUFA, 0.81 (0.61-1.06; P trend = 0.04) for n-6 PUFA and 0.93 (0.71-1.21; P trend = 0.45) for n-3 PUFA. CONCLUSIONS: We observed a marginally significant inverse trend between dietary PUFA intake and ESRD incidence, mainly driven by n-6 fatty acid intake. Our findings require replication but suggest that a diet rich in n-6 PUFA may prevent ESRD development in a population with a high burden of kidney disease risk factors.