A groundbreaking consensus has been achieved to standardize the assessment of life participation among chronic kidney disease (CKD) patients who do not require kidney replacement therapy. This initiative involved a diverse group of stakeholders aiming to enhance the quality and consistency of patient-centered outcomes in CKD research.
Workshop Insights
In March and April 2024, two comprehensive workshops were conducted—one online in English and another in-person in Spanish—bringing together 130 participants from 18 countries. The diverse assembly included 74 patients and caregivers alongside 56 healthcare professionals, fostering a holistic dialogue on defining meaningful life participation measures for CKD trials.
Key Themes Identified
The discussions led to the emergence of four pivotal themes essential for developing a robust core outcome measure. These themes emphasize the need for personalization, broad applicability across CKD spectrums, ease of implementation, and the potential to foster person-centered clinical care.
- Personal relevance and alignment with individual patient priorities
- Inclusivity of diverse life activities and fulfillment goals
- Applicability across various CKD stages and treatment modalities
- Feasibility in administration with minimal burden and strong psychometric properties
The resultant framework underscores the importance of enabling patients to interpret life participation within their unique contexts, ensuring the measure is versatile enough to be utilized across different CKD populations, and maintaining a high standard of reliability and practicality for widespread adoption in clinical trials.
Establishing a standardized measure for life participation holds significant potential to revolutionize patient-centered decision-making in CKD management. By consistently capturing meaningful life activities and personal fulfillment, healthcare providers can better tailor interventions to enhance the overall quality of life for patients. This advancement not only bridges the gap between clinical outcomes and patient experiences but also paves the way for innovative strategies aimed at improving life participation.
Implementing this core outcome measure will provide researchers and clinicians with a reliable tool to assess and compare the effectiveness of various treatments on patients’ daily lives. Additionally, it encourages the incorporation of patient feedback into the development of therapeutic approaches, ensuring that medical advancements align closely with the lived experiences and priorities of those affected by chronic kidney disease.
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