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The effect of genetic education on the referral of patients to genetic evaluation: Findings from a national survey of nephrologists

Rasouly, Hila Milo; Balderes, Olivia; Marasa, Maddalena; Fernandez, Hilda; Lipton, Marissa; Lin, Fangming; Gharavi, Ali G; Sabatello, Maya
PURPOSE:The success of genomic medicine hinges on the implementation of genetic knowledge in clinical settings. In novel subspecialties, it requires that clinicians refer patients to genetic evaluation or testing, however referral is likely to be affected by genetic knowledge. METHODS:An online survey was administered to self-identified nephrologists working in the United States. Nephrologists' demographic characteristics, genetic education, confidence in clinical genetics, genetic knowledge, and referral rates of patients to genetic evaluation were collected. RESULTS:In total, 201 nephrologists completed the survey. All reported treating patients with genetic forms of kidney disease, and 37% had referred <5 patients to genetic evaluation. A third had limited basic genetic knowledge. Most nephrologists (85%) reported concerns regarding future health insurance eligibility as a barrier to referral to genetic testing. Most adult nephrologists reported insufficient genetic education during residency (65%) and fellowship training (52%). Lower rating of genetic education and lower knowledge in recognizing signs of genetic kidney diseases were significantly associated with lower number of patients referred to the genetic evaluation (P < .001). Most nephrologists reported that improving their genetic knowledge is important for them (>55%). CONCLUSIONS:There is a need to enhance nephrologists' genetic education to increase genetic testing use in nephrology.
PMCID:10164060
PMID: 36789889
ISSN: 1530-0366
CID: 5599762

Long-Term Care of the Pediatric Kidney Transplant Recipient

Fernandez, Hilda E; Foster, Bethany J
Pediatric kidney transplant recipients are distinguished from adult recipients by the need for many decades of graft function, the potential effect of CKD on neurodevelopment, and the changing immune environment of a developing human. The entire life of an individual who receives a transplant as a child is colored by their status as a transplant recipient. Not only must these young recipients negotiate all of the usual challenges of emerging adulthood (transition from school to work, romantic relationships, achieving independence from parents), but they must learn to manage a life-threatening medical condition independently. Regardless of the age at transplantation, graft failure rates are higher during adolescence and young adulthood than at any other age. All pediatric transplant recipients must pass through this high-risk period. Factors contributing to the high graft failure rates in this period include poor adherence to treatment, potentially exacerbated by the transfer of care from pediatric- to adult-oriented care providers, and perhaps an increased potency of the immune response. We describe the characteristics of pediatric kidney transplant recipients, particularly those factors that may influence their care throughout their lives. We also discuss the risks associated with the transition from pediatric- to adult-oriented care and provide some suggestions to optimize transition to adult-oriented transplant care and long-term outcomes.
PMID: 33980614
ISSN: 1555-905x
CID: 4994212

Postvaccine Anti-SARS-CoV-2 Spike Protein Antibody Development in Kidney Transplant Recipients

Husain, Syed Ali; Tsapepas, Demetra; Paget, Kathryn F; Chang, Jae-Hyung; Crew, R John; Dube, Geoffrey K; Fernandez, Hilda E; Morris, Heather K; Mohan, Sumit; Cohen, David J
PMCID:8062410
PMID: 33907723
ISSN: 2468-0249
CID: 4994202

Evaluation of the Reproductive Care Provided to Adolescent Patients in Nephrology Clinics: A Pediatric Nephrology Research Consortium Study

Vasylyeva, Tetyana L; Page-Hefley, Shyanne; Almaani, Salem; Ayoub, Isabelle; Batson, Abigail; Hladunewich, Michelle; Howard, Noel; Fernandez, Hilda E; O'Shaughnessy, Michelle; Reynolds, Monica L; Wadhwani, Shikha; Zee, Jarcy; Smoyer, William E; Wenderfer, Scott E; Twombley, Katherine E
PMCID:8116773
PMID: 34013118
ISSN: 2468-0249
CID: 4994222

Telehealth in outpatient management of kidney transplant recipients during COVID-19 pandemic in New York [Letter]

Chang, Jae-Hyung; Diop, Mohamed; Burgos, Yvonne L; Blackstock, Daryle M; Fernandez, Hilda E; Morris, Heather K; Dube, Geoffrey K; Crew, Russell John; Mohan, Sumit; Husain, Syed Ali; Cohen, David J; Tsapepas, Demetra S
PMID: 32940919
ISSN: 1399-0012
CID: 4994182

Longitudinal Changes in Health-Related Quality of Life in Primary Glomerular Disease: Results From the CureGN Study

Murphy, Shannon L; Mahan, John D; Troost, Jonathan P; Srivastava, Tarak; Kogon, Amy J; Cai, Yi; Davis, T Keefe; Fernandez, Hilda; Fornoni, Alessia; Gbadegesin, Rasheed A; Herreshoff, Emily; Canetta, Pietro A; Nachman, Patrick H; Reeve, Bryce B; Selewski, David T; Sethna, Christine B; Wang, Chia-Shi; Bartosh, Sharon M; Gipson, Debbie S; Tuttle, Katherine R
Introduction/UNASSIGNED:Prior cross-sectional studies suggest that health-related quality of life (HRQOL) worsens with more severe glomerular disease. This longitudinal analysis was conducted to assess changes in HRQOL with changing disease status. Methods/UNASSIGNED:Cure Glomerulonephropathy (CureGN) is a cohort of patients with minimal change disease, focal segmental glomerulosclerosis, membranous nephropathy, IgA vasculitis, or IgA nephropathy. HRQOL was assessed at enrollment and follow-up visits 1 to 3 times annually for up to 5 years with the Patient-Reported Outcomes Measurement Information System (PROMIS). Global health, anxiety, and fatigue domains were measured in all; mobility was measured in children; and sleep-related impairment was measured in adults. Linear mixed effects models were used to evaluate HRQOL responsiveness to changes in disease status. Results/UNASSIGNED:A total of 469 children and 1146 adults with PROMIS scores were included in the analysis. HRQOL improved over time in nearly all domains, though group-level changes were modest. Edema was most consistently associated with worse HRQOL across domains among children and adults. A greater number of symptoms also predicted worse HRQOL in all domains. Sex, age, obesity, and serum albumin were associated with some HRQOL domains. The estimated glomerular filtration rate (eGFR) was only associated with fatigue and adult physical health; proteinuria was not associated with any HRQOL domain in adjusted models. Conclusion/UNASSIGNED:HRQOL measures were responsive to changes in disease activity, as indicated by edema. HRQOL over time was not predicted by laboratory-based markers of disease. Patient-reported edema and number of symptoms were the strongest predictors of HRQOL, highlighting the importance of the patient experience in glomerular disease. HRQOL outcomes inform understanding of the patient experience for children and adults with glomerular diseases.
PMCID:7569685
PMID: 33102960
ISSN: 2468-0249
CID: 4994192

Early Outcomes of Outpatient Management of Kidney Transplant Recipients with Coronavirus Disease 2019

Husain, S Ali; Dube, Geoffrey; Morris, Heather; Fernandez, Hilda; Chang, Jae-Hyung; Paget, Kathryn; Sritharan, Sharlinee; Patel, Shefali; Pawliczak, Olga; Boehler, Mia; Tsapepas, Demetra; Crew, R John; Cohen, David J; Mohan, Sumit
BACKGROUND AND OBJECTIVES:Outcomes of kidney transplant recipients diagnosed with coronavirus disease 2019 as outpatients have not been described. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:We obtained clinical data for 41 consecutive outpatient kidney transplant recipients with known or suspected coronavirus disease 2019. Chi-squared and Wilcoxon rank sum tests were used to compare characteristics of patients who required hospitalization versus those who did not. RESULTS:=0.02), but there were no other differences between groups. CONCLUSIONS:In an early cohort of outpatient kidney transplant recipients with known or suspected coronavirus disease 2019, many had symptomatic resolution without requiring hospitalization.
PMID: 32423908
ISSN: 1555-905x
CID: 4994172

Pilot Study of Return of Genetic Results to Patients in Adult Nephrology

Nestor, Jordan G; Marasa, Maddalena; Milo-Rasouly, Hila; Groopman, Emily E; Husain, S Ali; Mohan, Sumit; Fernandez, Hilda; Aggarwal, Vimla S; Ahram, Dina F; Vena, Natalie; Bogyo, Kelsie; Bomback, Andrew S; Radhakrishnan, Jai; Appel, Gerald B; Ahn, Wooin; Cohen, David J; Canetta, Pietro A; Dube, Geoffrey K; Rao, Maya K; Morris, Heather K; Crew, Russell J; Sanna-Cherchi, Simone; Kiryluk, Krzysztof; Gharavi, Ali G
BACKGROUND AND OBJECTIVES:Actionable genetic findings have implications for care of patients with kidney disease, and genetic testing is an emerging tool in nephrology practice. However, there are scarce data regarding best practices for return of results and clinical application of actionable genetic findings for kidney patients. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:We developed a return of results workflow in collaborations with clinicians for the retrospective recontact of adult nephrology patients who had been recruited into a biobank research study for exome sequencing and were identified to have medically actionable genetic findings. RESULTS:Using this workflow, we attempted to recontact a diverse pilot cohort of 104 nephrology research participants with actionable genetic findings, encompassing 34 different monogenic etiologies of nephropathy and five single-gene disorders recommended by the American College of Medical Genetics and Genomics for return as medically actionable secondary findings. We successfully recontacted 64 (62%) participants and returned results to 41 (39%) individuals. In each case, the genetic diagnosis had meaningful implications for the patients' nephrology care. Through implementation efforts and qualitative interviews with providers, we identified over 20 key challenges associated with returning results to study participants, and found that physician knowledge gaps in genomics was a recurrent theme. We iteratively addressed these challenges to yield an optimized workflow, which included standardized consultation notes with tailored management recommendations, monthly educational conferences on core topics in genomics, and a curated list of expert clinicians for patients requiring extranephrologic referrals. CONCLUSIONS:Developing the infrastructure to support return of genetic results in nephrology was resource-intensive, but presented potential opportunities for improving patient care. PODCAST:This article contains a podcast at https://www.asn-online.org/media/podcast/CJASN/2020_04_16_12481019.mp3.
PMCID:7269209
PMID: 32299846
ISSN: 1555-905x
CID: 4994162

The role of resilience in healthcare transitions among adolescent kidney transplant recipients

Quinn, Sheila M; Fernandez, Hilda; McCorkle, Taylor; Rogers, Rachel; Hussain, Saarah; Ford, Carol A; Barg, Frances K; Ginsburg, Kenneth R; Amaral, Sandra
PURPOSE:AYAs with KTs experience high rates of premature allograft loss during the HCT. There is a critical need to identify protective factors associated with stable HCT. Resilience-the ability to adapt and thrive in the setting of adversity-has known positive impact on health outcomes. This study explored the novel role of resilience constructs as protective factors in securing stable HCT among AYA with KT. METHODS:We conducted semi-structured interviews of adolescents and young adults who transitioned from a single pediatric transplant center to multiple adult nephrology centers between 2010 and 2017. Interviews explored the role of key resilience constructs in participants' lives around the time of HCT. Participants were stratified into stable or unstable HCT groups based on biological markers of allograft function and clinical data from chart review. Content analyses of interview transcripts were reviewed and compared among HCT groups. RESULTS:Thirty-two participants enrolled (17 stable; 15 unstable). Key resilience constructs more salient in the stable versus unstable HCT group were confidence in and connection to one's healthcare team. Reports of healthcare self-management competencies were similar across both HCT groups. CONCLUSIONS:Confidence in and connection to one's healthcare team appear to be linked with a stable HCT among AYA with KT. This suggests that interdependence, the ability to foster connections with and elicit support from healthcare providers, as opposed to complete independence or autonomy, which is often advised in the HCT process, is a critical component of resilience linked to stable HCT.
PMID: 31441191
ISSN: 1399-3046
CID: 4994142

The effect of transfer to adult transplant care on kidney function and immunosuppressant drug level variability in pediatric kidney transplant recipients

Fernandez, Hilda E; Amaral, Sandra; Shaw, Pamela A; Doyle, Alden M; Bloom, Roy D; Palmer, Jo Ann; Baluarte, Hobart J; Furth, Susan L
Adolescent age at time of transplant has been recognized as a risk factor for renal allograft loss. Increased risk for graft failure may persist from adolescence to young adulthood. Transfer of care is hypothesized as a risk factor for non-adherence and graft loss. We explored whether kidney allograft function declined at an accelerated rate after transfer of care to adult transplant centers and whether coefficient of variation of tacrolimus (CV TAC) trough levels predicted allograft loss. Single-center, retrospective chart review was performed for pediatric kidney transplant recipients who received transplants between 1999 and 2011. Change in eGFR pre- and post-transfer was performed via a linear mixed-effects model. CV TAC was calculated in transplant recipients with TAC data pre- and post-transfer. t test was performed to determine the difference between means of CV TAC in subjects with and without allograft loss following transfer of care. Of the 138 subjects who transferred to adult care, 47 subjects with data pre- and post-transfer demonstrated a decrease in the rate of eGFR decline post-transfer from 8.0 mL/min/1.73 m2 per year to 2.1 mL/min/1.73 m2 per year, an ~80% decrease in eGFR decline post-transfer (P = 0.01). Twenty-four subjects had CV TAC data pre- and post-transfer of care. Pretransfer CV TAC for subjects with allograft loss post-transfer was significantly higher than in subjects without allograft loss (49% vs 26%, P < 0.05). Transfer of care was not independently associated with acceleration in eGFR decline. CV TAC may aid in identifying patients at risk for allograft loss post-transfer.
PMID: 31209988
ISSN: 1399-3046
CID: 4994122