ASN's Mission

To create a world without kidney diseases, the ASN Alliance for Kidney Health elevates care by educating and informing, driving breakthroughs and innovation, and advocating for policies that create transformative changes in kidney medicine throughout the world.

learn more

Contact ASN

1401 H St, NW, Ste 900, Washington, DC 20005

email@asn-online.org

202-640-4660

The Latest on X

Kidney Week

Please note that you are viewing an archived section from 2019 and some content may be unavailable. To unlock all content for 2019, please visit the archives.

Abstract: SA-PO854

Utilising Mobile and Web-Based Technology for Capturing Patient-Specific Information: Methods from the DISCOVER CKD Program

Session Information

Category: CKD (Non-Dialysis)

  • 2101 CKD (Non-Dialysis): Epidemiology, Risk Factors, and Prevention

Authors

  • James, Glen, AstraZeneca, Cambridge, United Kingdom
  • Wei, Jenny, AstraZeneca, Cambridge, United Kingdom
  • Wittbrodt, Eric T., AstraZeneca, Cambridge, United Kingdom
  • Moreno Quinn, Carol Patricia, AstraZeneca, Cambridge, United Kingdom
  • Allum, Alaster, AstraZeneca, Cambridge, United Kingdom
  • Hedman, Katarina, AstraZeneca, Cambridge, United Kingdom
  • Chen, Hungta (tony), AstraZeneca, Cambridge, United Kingdom
  • Pascual, Esther, AstraZeneca, Cambridge, United Kingdom
  • Holmqvist, Björn, AstraZeneca, Cambridge, United Kingdom
  • Fenici, Peter, AstraZeneca, Cambridge, United Kingdom
  • Carrero, Juan Jesus, Karolinska Institutet, Stockholm, Sweden
  • Curhan, Gary C., Channing Division of Network Medicine, Brigham and Women's Hospital, Boston, Massachusetts, United States
  • Fishbane, Steven, Northwell Health, Commack, New York, United States
  • L Heerspink, Hiddo Jan, University Medical Center Groningen, Groningen, Netherlands
  • Kanda, Eiichiro, Kawasaki Medical School, Kurashiki, OKAYAMA, Japan
  • Kashihara, Naoki, Kawasaki Medical School, Kurashiki, OKAYAMA, Japan
  • Kosiborod, Mikhail, Saint Luke's Mid America Heart Institute, Kansas City, Missouri, United States
  • Carolyn, Lam Su ping, National Heart Centre Singapore, Singapore, Singapore
  • Pecoits-Filho, Roberto, Arbor Research Collaborative for Health, Ann Arbor, Michigan, United States
  • Pollock, Carol A., The University of Sydney, St. Leonards, New South Wales, Australia
  • Stenvinkel, Peter, Karolinska University Hospital Huddinge , Stockholm, Sweden
  • Wheeler, David C., University College London, London, LOndon, United Kingdom
Background

Chronic kidney disease (CKD) is a global health problem associated with cardiovascular complications, impaired health-related quality of life (HRQoL) and high mortality. New ways of capturing patient experiences and burden of disease in settings outside of the clinic through mobile or web-based technology are becoming more widely used, but not within CKD real-world data.

Methods

DISCOVER CKD is an enriched hybrid observational study utilising a novel cloud-based IT platform to integrate retrospective and prospective data from patients with estimated glomerular filtration rate (eGFR) <75 ml/min/1.73 m2 through to end stage kidney disease from the UK, US, Italy, Denmark, Sweden, China and Japan. Prospective data will be captured over a 3-year period from >1,000 CKD patients. Data collected by validated instruments including HRQoL (SF-36), physical activity (RAPA), work productivity (WPAI), diet (food diary), and other patient-reported outcomes will be captured in a bespoke mobile/web-based application to be completed by the patient before, during or after their routine clinical visit. The application will be available, validated and user-tested in multiple languages.

Results

Capturing patient-reported information outside of the clinic setting provides an innovative patient-centric approach for understanding the burden and journey of CKD from a patients’ perspective. Initial results are anticipated in 2020.

Conclusion

Utilising mobile/web-based technology to collect patient experiences has the potential to increase the understanding of a disease, with easier communication, minimising burden of data collection in the clinic from a patient, physician and eCRF perspective while improving the consistency and validity of data that patients enter.

Funding

  • Commercial Support – AstraZeneca