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.