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Andrew Vissing shares his clinical perspective and strategies to mitigate gaps in care and management for young adults with glomerular disease.
With a recently identified gap in glomerular disease outcomes among patients aged 14–25 years, clinicians may need to implement more frequent follow-ups to help young adults balance competing priorities.1
“Care should always be individualized, but this age group often requires additional nuance. A 20-year-old with glomerular disease can vary widely in independence and ability to manage a complex medical condition,” explained Andrew Vissing, MD, an attending physician and assistant professor at Northwestern University Feinberg School of Medicine, in an interview with HCPLive. “Early in diagnosis, these diseases often require close follow-up, and adolescents and young adults are at higher risk of being lost to follow-up because of competing life priorities.”
Findings from the Cure Glomerulonephropathy (CureGN) consortium in patients with immunoglobulin A nephropathy (IgAN), focal segmental glomerulosclerosis (FSGS), and minimal change disease (MCD) highlight unique disease trajectories in this age group, including higher relapse rates, faster kidney function decline, and, in some cases, quicker remission.
These differences suggest clinicians should not rely on arbitrary age cutoffs but instead view adolescents and young adults as a distinct group requiring tailored monitoring and treatment strategies.
In the United States, an estimated 0.4% of adolescents aged 12–17 have some form of chronic kidney disease (CKD), with glomerular diseases accounting for roughly 18% of pediatric kidney disease cases and affecting thousands. Previous CureGN research suggested that approximately 25% of individuals with adolescent-onset glomerular disease reached the composite eGFR decline outcome within five years, reflecting an increased risk of disease progression compared with both younger and older patients.1,2,3
Globally, glomerular disease affects millions, and incidence has been increasing over the past decades, highlighting the growing need for age-specific care models.2
Adolescence and young adulthood are transitional periods, particularly for patients managing glomerular disease. The focus on newfound independence, social pressures, and adjusting to careers can push disease management to the background. Additionally, this period also often coincides with transitions from pediatric to adult care providers, which can disrupt continuity and contribute to missed appointments or delayed treatment adjustments.1,4
From Vissing’s perspective, many patients in this age group may not initially grasp the seriousness of their disease. To address this, he implements shorter follow-up windows and frequently involves nurses or social workers to facilitate laboratory testing, medication access, and appointment adherence.1
This approach of increased support and monitoring benefits patients struggling to manage their own care. At the same time, Vissing notes he finds some young adults are capable of independently managing their kidney health, highlighting the need for flexible care strategies tailored to each patient’s level of independence.1
Another challenge for this population is limited access to newer therapies and clinical trial participation due to age-based cutoffs, typically set at 18 years. While this was not the focus of the study, Vissing emphasized it as an important area for improving care.1
“Pediatric patients < 18 are often excluded from trials of new medications, and it can take years for approved adult therapies to become available to younger patients,” he said. “While this was beyond the scope of our study, it highlights an important gap for adolescents and young adults, particularly those who fall just under age-based eligibility thresholds despite potentially benefiting from these treatments.”
Taken together, these findings underscore the need for clinicians to develop structured follow-up plans, consider multidisciplinary support, and advocate for trial inclusion to optimize outcomes for this age group.1
Editor’s Note: Vissing reports no relevant disclosures.
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