Opinion
Video
Gaps in Patient Care for IgA Nephropathy
Panelists discuss how significant gaps in immunoglobulin A (IgA) nephropathy patient care persist, including delayed diagnosis, limited access to nephrology expertise, inadequate disease monitoring, and insufficient psychosocial support throughout the disease journey.
Gaps in Patient Care for IgA Nephropathy
Diagnostic Challenges
- Delayed recognition: Asymptomatic nature leads to missed opportunities for early intervention
- Limited access to specialized nephropathology: Inconsistent interpretation of renal biopsies affects accurate diagnosis and risk stratification
- Inconsistent biopsy thresholds: Variability in when clinicians pursue diagnostic biopsies for persistent hematuria or low-grade proteinuria
Risk Stratification and Monitoring
- Inadequate biomarkers: Lack of reliable, noninvasive biomarkers for disease activity and progression risk
- Suboptimal follow-up protocols: Insufficient standardization of monitoring intervals and parameters
- Heterogeneous risk assessment: Inconsistent application of validated prognostic tools (MEST-C scores, clinical risk factors)
Treatment Gaps
- Delayed optimization of supportive care: Suboptimal dosing or premature abandonment of renin-angiotensin-aldosterone system blockade
- Therapeutic inertia: Reluctance to escalate therapy in high-risk patients despite persistent proteinuria
- Limited access to emerging therapies: Geographic and economic disparities in access to novel targeted agents
- Treatment discontinuities: Gaps in care during transitions between pediatric and adult nephrology
Psychosocial Support
- Insufficient patient education: Many patients lack understanding of their disease course and management options
- Inadequate psychological support: Limited resources addressing anxiety, depression, and coping with chronic disease
- Fragmented care coordination: Poor integration between specialty care and primary care providers
Health Care System Factors
- Geographic disparities: Concentration of expertise in academic centers creates access barriers
- Limited clinical trial participation: Underrepresentation of diverse patient populations in therapeutic trials
- Cost barriers: Financial toxicity of long-term medications and monitoring
- Delayed referrals: Primary care providers may not recognize indicators for nephrology evaluation
Research Translation
- Implementation gaps: Slow adoption of evidence-based guidelines into clinical practice
- Personalized medicine challenges: Limited tools for individualizing treatment approaches
- Outcome measurement inconsistencies: Variation in end points used to assess treatment response
Addressing these gaps requires multidisciplinary collaboration, development of practical clinical pathways, improved education for both patients and providers, and continued research into personalized treatment approaches for IgA nephropathy.
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