Nephrology Providers Research Articles

Palliative Care for Dialysis-Dependent Pediatric Patients: A Survey of Providers, Nurses, and Caregivers.

Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but remain underutilized within pediatric nephrology. Little is known about how providers, nurses, and caregivers perceive palliative care integration into the multidisciplinary care of dialysis-dependent pediatric patients. This study surveyed pediatric nephrology providers (physicians and advanced practice providers), inpatient pediatric nephrology bedside nurses, and caregivers of dialysis-dependent pediatric patients at a freestanding tertiary care children's hospital in Dallas, Texas. Participants completed a survey regarding knowledge about, experiences with, and perceptions of palliative care in pediatric nephrology. 10 providers, 20 nurses, and 18 caregivers completed the survey. Although 80% of providers and all nurses agreed that palliative care would benefit dialysis-dependent pediatric patients, most believed that palliative care is not as important in pediatric nephrology as it should be. 70% of providers and 45% of nurses believed that they understand the scope of palliative care. 90% of providers and all nurses desired more palliative care education. Of the 22% of caregivers whose child had already received palliative care services, all found the consultation to be helpful. Many providers and nurses worried that a palliative care consultation would signal to families that the nephrology team would be giving up on their child and that their child is approaching the end of life. However, no caregivers thought that a consultation would mean that the nephrology team would be giving up on their child and only 6% worried that it would indicate that their child is approaching the end of life. These data support further palliative care education for pediatric nephrology providers and nurses and more robust and systematic involvement of subspecialty palliative care for dialysis-dependent pediatric patients.

Nephrology Provider Engagement in Comprehensive Shared Decision-Making Discussions With Older Adults: Results of a Cross-Sectional Survey.

Background: The largest patient group initiating dialysis for end-stage renal disease is persons over 75 years. Evidence indicates pre-dialysis shared decision-making discussions between nephrology providers and older adults are infrequent and often do not include an option for conservative management of symptoms without dialysis. Aims: To assess and compare behavioral determinants of nephrology providers' use of comprehensive pre-dialysis shared decision-making discussions with older adults. A secondary aim was to prepare the bases for tailored behavioral intervention(s) for nephrology providers by identifying the determinant(s) that should be targeted to elicit change in comprehensive shared decision-making intentions and the resulting behavior. Methods: A cross-sectional survey based on the Theory of Planned Behavior was completed by nephrologists from a state organization and nephrology advance practitioners from a national organization, either in person or online via Qualtrics. Results: Survey respondents included nephrologists (n=29), and nurse practitioners (n=37) and physician assistants (n=7), combined, were predominantly female (83%) and White American (67%). Spearman rho correlation results showed attitude, social norm, and perceived behavioral control were correlated with shared decision-making behavior for one or both groups. Significant differences were present between the two groups for determinants and behaviors. Conclusion: Based on the determinants predominantly influencing SDM behavior of nephrology advance practitioners, behavioral interventions targeting the determinants of Social Norm and Perceived Behavioral Control are warranted. All determinants can be utilized in behavioral interventions for nephrologists.Opportunity exists for collaboration between providers to develop consistent and effective methods of SDM discussion that fit into a typical workday.

Providers' experiences discussing care for patients with kidney failure who forgo kidney replacement therapy: A national qualitative study.

Many nephrology providers express difficulty in discussing care options for patients who forgo kidney replacement therapy (KRT), which hampers their ability to help patients make decisions about their current and future treatment of kidney disease. We conducted a qualitative study using interviews with a national sample of nephrology providers (i.e., physicians and advanced practice providers) who participated in US professional societies between July and December 2022. We performed a thematic analysis of interviews to identify emergent themes reflecting providers' experiences discussing care for patients who forgo KRT. There were 21 providers (age 54±13years, female 81%, White 32%) who participated in interviews, of which 43% were physicians and most (57%) practiced in academic settings. Three dominant themes emerged from interviews: 1) Inconsistent terminology: while providers sought to use terms to describe care for patients who forgo KRT that affirmed patients' decision, clearly conveyed that KRT would not be pursued, and were familiar to patients and other providers, they disagreed about which terms satisfied these priorities; 2) Blurred distinctions between KRT and its alternative: providers' descriptions of their care practices suggested that differences in their approaches to caring for patients who forgo KRT and those who are planning to pursue KRT could be opaque; and, 3) Deciphering patients' decision to forgo KRT: providers did not readily accept patients' expressed preferences to forgo KRT at face value and described using a variety of methods to assess whether patients would follow through with their decision. Providers used different, inconsistent terms to describe care for patients who forgo KRT. They disagreed about what this care entailed and were uncertain about what patients might mean when they express not wanting to undergo KRT.

Implementation of kidney palliative care-lessons learned from the US Department of Veterans Affairs.

Advanced kidney disease is a progressive life-limiting illness associated with high symptom burden, disability, and highly intensive care near the end of life. There is growing interest in integrating palliative care principles into the care of patients with advanced kidney disease to improve care and outcomes for these patients. The United States (US) Department of Veterans Affairs (VA) has been a leader in advancing palliative care initiatives across its health system and whose experience and approach may be instructive to other health systems seeking to develop kidney palliative care (KPC) services. Herein, we review current KPC programs in the VA and highlight the different models of care that programs have been adopted and how key components of goals of care conversations and advance care planning, symptom management, multidisciplinary care, patient selection, and quality improvement have been implemented across programs. VA KPC programs have adopted "parallel", "merged", and "embedded" models of KPC that reflect the different configurations of partnerships between nephrology and palliative care providers to deliver KPC. A primary service of VA KPC programs is providing goals of care conversations and advance care planning to referred patients and systematically documenting the outcomes of these discussions in standardized note templates in the electronic medical record. Symptom management is delivered by KPC providers through regular shared or sequential visits with patients' nephrology providers and is guided by patient responses to validated symptom surveys. Programs are staffed by allied health professionals, such as chaplains, pharmacists, social workers, and dieticians, to provide whole-person care and regularly huddle with nephrology staff to reach a shared understanding of each patient's care needs and plan. KPC programs implement champions who select patients in greatest need of KPC using a combination of clinical events that trigger referral for KPC and validated mortality risk prediction scores that are automatically generated in each patient's medical record. KPC programs also routinely collect clinical, patient-reported, process, and care quality measures to assess its services. The experiences of the VA highlight novel approaches that strive to close the care gaps in meeting the KPC needs of patients with advanced kidney disease.

#1495 5 and 10 year kidney outcomes in acute interstitial nephritis: a retrospective single-centre cohort study

Abstract Background and Aims Acute interstitial nephritis (AIN) is a common cause of acute kidney injury (AKI), histologically characterized by an interstitial inflammatory cell infiltrate. Data regarding long term kidney outcomes is lacking. We performed a retrospective cohort study to evaluate the long-term kidney and mortality outcomes in patients with biopsy-proven AIN between 2011-2018. Method We serve as a tertiary referral centre and sole nephrology provider for a population of over 650,000 people. We identified biopsy-proven AIN cases from the years 2011-2018 from our pathology database. Demographic data, creatinine, eGFR (calculated using CKD-EPI 2021 formula), dialysis and mortality data were collected from our electronic medical record. Ethical approval was obtained. Results Between 2011 – 2018, 576 native kidney biopsies were performed in our centre. 66 (11.5%) cases had pathologically confirmed AIN as the primary kidney diagnosis. Long-term outcome data was available for 90.9% (60). The median age at time of biopsy was 52.5 years (IQR 41.5 - 68.3). 68% of patients were male. The aetiology of AIN was medication in 42%, autoimmune in 15% and infection-associated in 3%. Of the cases of drug-induced AIN the predominant culprits agents were non-steroidal anti-inflammatories 28%, proton pump inhibitors in 24%, antibiotics 20%, with other medications in 8%. The median eGFR at the time of biopsy was 13.6 (IQR 7.9 -25.4) mls/min/1.73 m2. The median eGFR at year 1 was 47.8 (IQR 30.7 - 72.7) mls/min/1.73 m2, 54.4 (IQR 31.2 -79.6) mls/min/1.73 m2 at year 5 and 69.4 (IQR 19.9 - 86.1) mls/min/1.73 m2 at year 10. See Table 1 for results. At one year 64.3% of cases had eGFR < 60 mls/min/1.73 m2 (CKD III or higher). Interestingly the rate of CKD was lower at years 5 and 10 (54.7% and 50% respectively). GFR <30 mls/min (CKD IV or higher) were present in 25% at year 1, 26% at year 5 and 37% at year 10. 23% (14/60) people had dialysis-requiring AKI at the time of biopsy. Of these 21.4% (3) remained dialysis dependent at one year. In this group, no additional cases of ESKD were seen between years 1 through 5, one additional case of ESKD occurred by year 10. A composite outcome of kidney failure (GFR <15, dialysis or kidney transplantation) occurred in 48.2% at year 1, 54.7% at year 5 and 56.2% at year 10. Mortality data was available on 58 patients. 18.9% (11) people had died at 10 years follow-up. 8 out of the 11 deaths were within 5 years, 2 of which were within 1 year of diagnosis. Conclusion In this single centre study, kidney failure occurred in 48% of people at 10 years of follow up. 78% of dialysis-requiring cases recover independent renal function.

410 Results of a Survey on How Nephrology Providers Assess Kidney Size for Autosomal Dominant Polycystic Kidney Disease

410 Results of a Survey on How Nephrology Providers Assess Kidney Size for Autosomal Dominant Polycystic Kidney Disease

Transitioning from Pediatric- to Adult-focused Dialysis Care: A Systematic Review with Recommendations

Background: There is limited data evaluating the practices of nephrologists who prepare dialysis-dependent adolescents and young adults (AYA) for healthcare transition (HCT) from pediatric- to adult-focused healthcare. The aims of this manuscript are to 1) critically evaluate the current evidence and experiences surrounding HCT from pediatric- to adult-focused dialysis units and 2) make recommendations that can be implemented for this process. Methods: We searched PubMed, EMBASE, CINAHL, COCHRANE, and clinicaltrials.gov to identify studies that pertain to the HCT of AYA patients from pediatric- to adult-focused dialysis care. Results: A total of 14 studies were included and were grouped into subcategories to facilitate data synthesis: HCT process, preparedness of patient and family, preparedness of adult-focused nephrology providers, barriers to HCT, and quality of life. These included studies highlight the importance of creating an HCT process with a formal policy. They focus on the importance of patient and family preparedness and on measuring HCT readiness using standardized scales. They also underline the importance of identifying adult-focused nephrology ‘HCT champions’ to care for AYA requiring dialysis. Lastly, they emphasize the importance of measuring the quality of life in AYA patients to ensure optimal patient-centered HCT. Conclusion: There is limited data on HCT for AYA with ESKD. Upon review and analysis of current literature, we recommend: creating a formal, written HCT policy; setting achievable goals for health self-management and conducting regular assessments of HCT readiness; identifying a lead or ‘champion’ at an accepting adult-focused dialysis unit and ensuring good communication between pediatric and adult providers; and completing annual quality-of-life assessments.

A National Survey of Conservative Kidney Management Practices for Patients Who Forgo RRT.

Clinical practice guidelines advocate for conservative kidney management (CKM), a planned, holistic, patient-centered approach to caring for patients who forgo initiation of kidney replacement therapy (KRT). Little is known about the extent to which current care practices meet these expectations. We conducted a cross-sectional survey of a national sample of nephrology providers recruited through US professional societies between March-July 2022 and inquired about their experiences with caring for patients who forgo KRT and their capacity to provide CKM. Overall, 203 nephrology providers (age 47±12years, 53.2% white, 66.0% female), of which 49.8% were nephrologists and 50.2% advanced practice providers, completed the survey. Most (70.3%) reported that <10% of their practice comprised patients who had forgone KRT. Most indicated that they "always" or "often" provided symptom management (81.8%), multidisciplinary care (68.0%), tools to support shared decision-making about treatment of advanced kidney disease (66.3%), and psychological support (52.2%) to patients who forgo KRT, while less than half reported that they "always" or "often" provided staff training on the care of these patients (47.8%) and spiritual support (41.4%). Most providers reported "always" or "often" working with primary care (72.9%), palliative medicine (68.8%), hospice (62.6%), social work (58.1%) and dietitian (50.7%) services to support these patients, while only a minority indicated that they "always" or "often" offered chaplaincy (23.2%), physical and/or occupational therapy (22.8%), psychology or psychiatry (31.5%), and geriatric medicine (28.1%). Many nephrology providers have limited experience with caring for patients who forgo KRT. Our findings highlight opportunities to optimize comprehensive CKM care for these patients.

Fetal urinary tract dilation: What to tell the parents.

Urinary tract dilation (UTD), which refers to the abnormal dilation of the urinary collection system, is the most common finding on prenatal ultrasound and presents with varying severity, presentation, etiology, and prognosis. Prenatal classification and risk stratification aim to prevent postnatal complications, such as urinary tract infections and further kidney dysfunction. Parents expecting a child with UTD should be counseled by a multidisciplinary team consisting of maternal-fetal medicine specialists, and pediatric urology and nephrology providers. This review summarizes the key points in the diagnostic evaluation and management during the prenatal and initial postnatal period, focusing on the information that should be provided to future parents. We address frequently asked parental questions and concerns that our multidisciplinary clinical practice faces.

THU233 Reduction Of Overutilization Of 1,25-Dihydroxyvitamin D

Abstract Disclosure: J. Brown: None. M. Dewan: None. J. Courter: None. A. Spooner: None. J. Treasure: None. K. Kaplan: None. N.A. Crimmins: None. Unnecessary testing may lead to patient harm, inappropriate treatments, and/or increased cost. Per the Endocrine Society, in conjunction with Choosing Wisely, 1,25-dihydroxyvitamin D (1,25-OH D) should not be measured unless a patient has hypercalcemia or decreased kidney function. This study sought to evaluate overutilization of 1,25-OH D at Cincinnati Children's Hospital Medical Center. We queried EPIC for all 1,25 OH vitamin D tests drawn in all patients (inpatient and outpatient) between 01/01/2021 and 12/31/2021. We then cross-referenced each test with all patient ICD10 codes associated with each patient’s chart. Appropriate ordering was defined as the patient having an ICD10 code related to calcium disorders or renal disease (531 codes included, data not shown). Out of a total of 1,057 1,25-OH D tests ordered, we found that only 19.4 percent were in patients whose chart contained a code that clinically would indicate testing. Further analysis showed most of these tests were obtained by psychiatry (22.7%) and community general pediatricians (14.6%) and not by endocrinology (12.5%) or nephrology (2.2%) providers. We will use this as baseline data to design quality improvement interventions to reduce unnecessary ordering of 1,25 OH vitamin D, including an ordering pathway in Epic to provide point of care education and guidance regarding appropriate Vitamin D test selection. In summary, inappropriate ordering of 1,25 vitamin D is common, likely due to misunderstanding of the best test to determine vitamin D sufficiency. Presentation: Thursday, June 15, 2023

Considerations for genetic testing in individuals with autosomal dominant polycystic kidney disease.

Autosomal dominant polycystic kidney disease (ADPKD) is a systemic, irreversible, genetic condition caused by mutations in the PKD1 and PKD2 genes, and the most common form of inherited kidney disease in the United States, affecting more than 600,000 individuals. Because the condition is autosomal dominant, there is a 50% chance that each child of an affected adult will also have the pathogenic genetic mutation. PKD1 mutation accounts for approximately 85% of ADPKD cases and is characterized by an earlier onset of disease with more rapid progression, whereas PKD2 mutation accounts for the remaining 15% of cases and is characterized by a less severe and less rapid disease course. Genetic testing is not consistently used in the management of individuals with ADPKD, although it can provide invaluable information regarding disease progression and prognosis. Genetic data are necessary to effectively communicate disease progression with patients, use current prognostic calculators, and play a role in family planning. Increasing clinician knowledge in primary care and nephrology providers will contribute to improved care for individuals affected by ADPKD.

Best Case/Worst Case: protocol for a multisite randomised clinical trial of a scenario planning intervention for patients with kidney failure

IntroductionGiven the burdens of treatment and poor prognosis, older adults with kidney failure would benefit from improved decision making and palliative care to clarify goals, address symptoms, and reduce unwanted...

Reducing disparities in kidney transplantation for Spanish-speaking patients through creation of a dedicated center

IntroductionHispanic Americans receive disproportionately fewer organ transplants than non-Hispanic whites. In 2018, the Hispanic Kidney Transplant Program (HKTP) was established as at the University of Colorado Hospital (UCH). The purpose of this quality improvement study was to examine the effect of this culturally sensitive program in reducing disparities in kidney transplantation.MethodsWe performed a mixed-methods analysis of data from 436 Spanish-speaking patients referred for transplant to UCH between 2015 and 2020. We compared outcomes for patients referred between 2015–2017 (n = 156) to those referred between 2018–2020 (n = 280). Semi-structured phone interviews were conducted with 6 patients per time period and with 6 nephrology providers in the Denver Metro Area. Patients and providers were asked to evaluate communication, transplant education, and overall experience.ResultsWhen comparing the two time periods, there was a significant increase in the percentage of patients being referred (79.5% increase, p-0.008) and evaluated for transplant (82.4% increase, p = 0.02) during 2018–2020. While the number of committee reviews and number waitlisted increased during 2018–2020, it did not reach statistical significance (82.9% increase, p = 0.37 and 79.5% increase, p = 0.75, respectively. During patient and provider interviews, we identified 4 themes reflecting participation in the HKTP: improved communication, enhanced patient education, improved experience and areas for advancement. Overall, patients and providers reported a positive experience with the HKTP and noted improved patient understanding of the transplantation process.ConclusionsThe establishment of the HKTP is associated with a significant increase in Spanish-speaking Hispanic patients being referred and evaluated for kidney transplantation.

Keys to Driving Implementation of the New Kidney Care Models.

Contemporary nephrology practice is heavily weighted toward in-center hemodialysis, reflective of decisions on infrastructure and personnel in response to decades of policy. The Advancing American Kidney Health initiative seeks to transform care for patients and providers. Under the initiative's framework, the Center for Medicare and Medicaid Innovation has launched two new care models that align patient choice with provider incentives. The mandatory ESRD Treatment Choices model requires participation by all nephrology practices in designated Hospital Referral Regions, randomly selecting 30% of all Hospital Referral Regions across the United States for participation, with the remaining Hospital Referral Regions serving as controls. The voluntary Kidney Care Choices model offers alternative payment programs open to nephrology practices throughout the country. To help organize implementation of the models, we developed Driver Diagrams that serve as blueprints to identify structures, processes, and norms and generate intervention concepts. We focused on two goals that are directly applicable to nephrology practices and central to the incentive structure of the ESRD Treatment Choices and Kidney Care Choices: (1) increasing utilization of home dialysis, and (2) increasing the number of kidney transplants. Several recurring themes became apparent with implementation. Multiple stakeholders from assorted backgrounds are needed. Communication with primary care providers will facilitate timely referrals, education, and comanagement. Nephrology providers (nephrologists, nursing, dialysis organizations, others) must lead implementation. Patient engagement at nearly every step will help achieve the aims of the models. Advocacy with federal and state regulatory agencies will be crucial to expanding home dialysis and transplantation access. Although the models hold promise to improve choices and outcomes for many patients, we must be vigilant that they not do reinforce existing disparities in health care or widen known racial, socioeconomic, or geographic gaps. The Advancing American Kidney Health initiative has the potential to usher in a new era of value-based care for nephrology.

Nephrology and Palliative Care Providers' Beliefs in Engaging American Indian Patients in Palliative Care Conversations.

Background: American Indians with chronic kidney disease are twice as likely to develop end-stage renal disease. Palliative care is underused by American Indian patients, although studies show it is not due to an unwillingness to engage in conversations about end of life. Objectives: The aim of our study was to explore the experiences and beliefs of Nephrology and palliative care providers of one tribal community with respect to engaging patients and family members in palliative care. Design: Using an interview guide, individual, in-depth interviews were conducted between March and August 2019 with eligible participants. We used constant comparative analysis of interview transcripts. Setting and Subjects: Our study sample included eight participants, including four Nephrology providers and four palliative care providers. Results: We identified five themes, including (1) providers' stereotypes, (2) patients' mistrust of providers, (3) patients' end-of-life preferences, (4) available community resources, and (5) patients' family dynamics. Negative stereotypes were present in every theme, although most participants did not acknowledge the role stereotypes played in establishing trust and building therapeutic relationships conducive to end-of-life discussions. Conclusion: Providers serving American Indian patients with kidney disease should consider training in trauma informed care and cultural sensitivity. Negative stereotypes of American Indian patients may impact provider's ability to build trust, a key component of end-of-life conversations, and contribute to misperceptions related to family dynamics, end-of-life preferences, and available community resources.

Nephrology and Palliative Care Providers’ Experiences and Beliefs in Engaging American Indian Patients in Palliative Care Conversations (RP315)

Nephrology and Palliative Care Providers’ Experiences and Beliefs in Engaging American Indian Patients in Palliative Care Conversations (RP315)

Pregnancy, Contraception, and Menopause in Advanced Chronic Kidney Disease and Kidney Transplant.

Background: Reproductive health is an essential part of the care of women with kidney disease. However, the self-reported patient experience of reproductive issues has been underexplored.Materials and Methods: We identified a cohort of women ages 18 to 44 at the time of kidney transplant from 1996 to 2014 at our 3-site program (n = 816). We sent each woman a survey on her reproductive lifespan, characterizing features from menarche to menopause.Results: We received survey responses from 190 patients (27%). One third of respondents reported amenorrhea before transplant, and 61.5% of these women reported resumption of menses post-transplant. The average age of menopause was 45.5 years, earlier than the general population (51.3 years). There were 204 pregnancies pretransplant and 52 pregnancies post-transplant. Pregnancies post-transplant were more likely to be complicated by preeclampsia, preterm delivery, and small for gestational age babies than pregnancies that occurred >5 years before transplant. Pregnancies <5 years before transplant were similar to post-transplant pregnancies with respect to complications. Forty-two percent of women were advised to avoid pregnancy after transplant, most often by a nephrology provider.Conclusions: In our cohort of kidney transplant recipients, women report increased pregnancy-related complications post-transplant and in the 5 years before transplant, compared with pregnancies that occurred greater than 5 years before transplant. They were often counseled to avoid pregnancy altogether. Women reported a younger age of menopause relative to the general population. This should be considered when counseling patients with chronic kidney disease regarding optimal pregnancy timing.

Xanthogranulomatous Pyelonephritis: A Clinical Analysis

Xanthogranulomatous pyelonephritis (XGP) is an inflammatory form of chronic renal disease with the characteristics of pyelonephritis. It is associated with staghorn nephrolithiasis, kidney tissue damage, renal function loss, and a nonfunctional kidney. XGP can be confused with neoplastic or inflammatory renal conditions due to its indistinguishable imaging and its vague clinical presentation. The treatment of choice is nephrectomy. Only a few cases of XGP have been treated medically. XGP should be managed by urology and nephrology providers. The nurse practitioner should refer patients with recurrent or persistent urinary tract infections, renal stones, staghorn calculi, or pyelonephritis to nephrology and urology specialists for further evaluation and management.

Determinants of Nephrology Provider Engagement in Comprehensive Pre-Dialysis Discussions with Older Adults: Scale Development and Psychometric Evaluation

Determinants of Nephrology Provider Engagement in Comprehensive Pre-Dialysis Discussions with Older Adults: Scale Development and Psychometric Evaluation

Determinants of Nephrology Provider Engagement in Comprehensive Pre-Dialysis Discussions with Older Adults: Scale Development and Psychometric Evaluation

Determinants of Nephrology Provider Engagement in Comprehensive Pre-Dialysis Discussions with Older Adults: Scale Development and Psychometric Evaluation