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Patient-Reported Outcomes in the Treatment of IgA Nephropathy

Opinion
Video

Panelists discuss how patient-reported outcomes including symptom burden, treatment-related adverse effects, preserved functionality, and impact on quality of life should be prioritized alongside traditional clinical measures when assessing the value of immunoglobulin A (IgA) nephropathy therapies.

Patient-Reported Outcomes in IgA Nephropathy Treatment Evaluation

Critical Patient-Reported Domains

Symptom Management

  • Fatigue assessment: Severity, impact on daily activities, and improvement with therapy
  • Energy levels: Changes in vitality and stamina for routine tasks
  • Edema-related discomfort: Swelling, tightness, and physical restrictions
  • Pain during hematuria episodes: Intensity and duration of flank or abdominal discomfort
  • Sleep quality: Disruption from nocturia, anxiety, or physical symptoms

Functional Capacity

  • Work productivity: Ability to maintain employment, attendance, and performance
  • Physical functioning: Capacity for exercise, household activities, and self-care
  • Cognitive function: Clarity of thinking and concentration with progressive disease
  • Social engagement: Participation in family events and community activities
  • Travel limitations: Impact of disease on mobility and travel independence

Psychological Well-Being

  • Disease uncertainty anxiety: Concerns about unpredictable progression
  • Treatment burden: Mental load of medication adherence and appointments
  • Depression screening: Mood impact of chronic disease diagnosis
  • Body image concerns: Related to edema, medication adverse effects, or future dialysis access
  • Sense of control: Patient empowerment in disease management

Treatment Experience

  • Medication adverse effects: Tolerability of prescribed therapies
  • Treatment satisfaction: Perceived benefit relative to burden
  • Health care interaction quality: Communication effectiveness with providers
  • Treatment convenience: Impact of therapy schedule on daily routines
  • Financial toxicity: Economic burden of treatment regimens

Implementation Considerations

  • Systematic assessment: Integration of validated patient-reported outcome (PRO) measures into routine clinical workflows
  • Measurement frequency: Regular scheduled evaluation at meaningful intervals
  • Action thresholds: Defined parameters for intervention based on PRO results
  • Shared decision-making: Using PRO data to guide treatment choices
  • Comparative effectiveness: Inclusion of PROs in evaluating therapeutic options

Prioritizing these patient-centered outcomes alongside traditional clinical end points provides a more comprehensive assessment of treatment value and supports therapeutic decision-making that aligns with patients’ priorities and quality of life goals.

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