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Kidney Week

Abstract: PO0577

Development of a Global CKD Personal Impact Index (CKD-PII) Assessing the Reality of Living with CKD

Session Information

Category: CKD (Non-Dialysis)

  • 2102 CKD (Non-Dialysis): Clinical, Outcomes, and Trials


  • James, Mary Faith, W2O, San Francisco, California, United States
  • Windett, Corey, AstraZeneca, Wilmington, Delaware, United States
  • Guiglotto, Jillian Kate, W2O, San Francisco, California, United States

CKD affects >700M people globally, but its full burden and personal impact attributes (PIA)—impact on instrumental activities of daily living—are under-recognized. Quality of life (QoL) measures fail to show the full patient experience. A Global CKD-PII uncovering the direct and indirect daily impact of CKD on patients may improve understanding of disease burden and secondary complications. The development of the CKD-PII using a geographically diverse cohort of CKD patient-reported aggregate data is described.


A multiphase approach was used to develop CKD-PII. In Phase 1, social media landscape audit and qualitative interviews determined PIA to understand disease burden. Patient conversations within online communities gauged the social, economic and physical impact of CKD. Each attribute was assigned as high, medium or low impact based on the lexicon, overall sentiment and self-reported effect on patient’s QoL. Qualitative, moderated phone interviews followed an engagement model, whereby key PIA and language and characterization of attributes were further explored. Findings of Phase 1 informed Phase 2, a quantitative survey. Data from both phases will culminate in the development of CKD-PII.


Phase 1: Social media landscape analysis leveraged 12 months of relevant patient dialogues (n=156) and shortlisted 11 key PIA from >200M internet sources. Among the key PIAs identified, dietary impacts (19%), time lost to appointments/dialysis (45%) and mental health implications (44%) were rated as high impact. Qualitative interviews (n=15) uncovered key PIA identified consistently. Phase 2: An online survey questionnaire was administered to quantify the extent of patients’ experience of PIA. The CKD-PII synthesizes data from all research phases into an insights and perspectives report evaluating global perspectives.


Uniquely, CKD-PII will use metrics to showcase the real-life impact of CKD, beyond QoL, providing insights into the patient experience that other studies do not typically address. The social media data facilitates understanding of critical issues and patient needs in an organic environment. This cohort of global patient-reported data will raise awareness of the deeper impact of CKD and develop tangible and realistic solutions for both patients and doctors to solve the challenges uncovered.


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