PATHWAYS in Glomerular Diseases: A Protocolized, Registry-Based Approach to Enhance Transitions of Care in Pediatric-to-Adult Care, Kidney Transplant Referral, and Dialysis Initiation

Background: Patients with glomerular disease (GN) experience fragmented transitions across their lifespan. The PATHWAYS Project aims to improve outcomes for these high-risk patients by standardizing three critical potential transition points: pediatric-to-adult care, kidney transplant referral, and dialysis planning. The project is embedded within the Mid-Atlantic Glomerulonephritis Network (MAGNET) registry and the VCU Kidney HEALTH platform. Methods: Eligible patients with GN (e.g., FSGS, IgA nephropathy, lupus nephritis) were identified through MAGNET and recruited for protocolized onboarding, including informed consent and baseline biospecimen collection (blood/urine). Participants were enrolled in the PATHWAYS registry and assigned to one or more transition pathways based on clinical disposition at enrollment (Figure 1): Pediatric-to-Adult Care: Patients aged ≥18 complete the TRAQ 6.0 at their initial adult visit. Tiered scores guide follow-up. Education includes the “READY Guide,” personalized summaries, and goal-setting tools. Kidney Transplant Referral: Adults with eGFR ≤20 or high KFRE risk (>40%) are identified via Epic, educated with GN-specific transplant guides, and tracked for evaluation and listing. Dialysis Planning: Patients nearing ESKD receive education on CKD, lifestyle, diet, insurance, and RRT options. Shared decision-making supports access planning and pre-initiation care. Results: Enrollment is ongoing. Process evaluation includes protocol adherence (e.g., timely onboarding, follow-up), improvement in TRAQ scores, and timeliness of transplant or dialysis preparation. Key outcomes will be tracked via REDCap and Epic integration. Conclusion: The PATHWAYS Project offers a scalable, protocol-driven framework to improve care transitions in GN. Integration with a registry and biospecimen bank enables longitudinal tracking and future research on outcomes and disease progression. Funding: Private Foundation SupportFigure 1. Patient Care Transition and Treatment Planning Flow for Glomerular Disease

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Journal
Journal of the American Society of Nephrology
Published
2025-10-01
DOI
https://doi.org/10.1681/asn.20250exsnsea
Primary Topic
Adolescent and Pediatric Healthcare
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article
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article

PATHWAYS in Glomerular Diseases: A Protocolized, Registry-Based Approach to Enhance Transitions of Care in Pediatric-to-Adult Care, Kidney Transplant Referral, and Dialysis Initiation

Jason M. Kidd, Amber B. Paulus
Journal of the American Society of Nephrology
Adolescent and Pediatric Healthcare
article

PATHWAYS in Glomerular Diseases: A Protocolized, Registry-Based Approach to Enhance Transitions of Care in Pediatric-to-Adult Care, Kidney Transplant Referral, and Dialysis Initiation

Jason M. Kidd, Amber B. Paulus
article en

Abstract

Background: Patients with glomerular disease (GN) experience fragmented transitions across their lifespan. The PATHWAYS Project aims to improve outcomes for these high-risk patients by standardizing three critical potential transition points: pediatric-to-adult care, kidney transplant referral, and dialysis planning. The project is embedded within the Mid-Atlantic Glomerulonephritis Network (MAGNET) registry and the VCU Kidney HEALTH platform. Methods: Eligible patients with GN (e.g., FSGS, IgA nephropathy, lupus nephritis) were identified through MAGNET and recruited for protocolized onboarding, including informed consent and baseline biospecimen collection (blood/urine). Participants were enrolled in the PATHWAYS registry and assigned to one or more transition pathways based on clinical disposition at enrollment (Figure 1): Pediatric-to-Adult Care: Patients aged ≥18 complete the TRAQ 6.0 at their initial adult visit. Tiered scores guide follow-up. Education includes the “READY Guide,” personalized summaries, and goal-setting tools. Kidney Transplant Referral: Adults with eGFR ≤20 or high KFRE risk (>40%) are identified via Epic, educated with GN-specific transplant guides, and tracked for evaluation and listing. Dialysis Planning: Patients nearing ESKD receive education on CKD, lifestyle, diet, insurance, and RRT options. Shared decision-making supports access planning and pre-initiation care. Results: Enrollment is ongoing. Process evaluation includes protocol adherence (e.g., timely onboarding, follow-up), improvement in TRAQ scores, and timeliness of transplant or dialysis preparation. Key outcomes will be tracked via REDCap and Epic integration. Conclusion: The PATHWAYS Project offers a scalable, protocol-driven framework to improve care transitions in GN. Integration with a registry and biospecimen bank enables longitudinal tracking and future research on outcomes and disease progression. Funding: Private Foundation SupportFigure 1. Patient Care Transition and Treatment Planning Flow for Glomerular Disease

Journal of the American Society of NephrologyVol. 36(10S)
Virginia Commonwealth University (US)
Openalex Percentile: Top 52%
Adolescent and Pediatric Healthcare
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