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Abstract: SA-PO889

Characteristics and Symptom Severity of Patients Reporting CKD in the PatientsLikeMe Online Health Community

Session Information

  • CKD: Pharmacoepidemiology
    November 09, 2019 | Location: Exhibit Hall, Walter E. Washington Convention Center
    Abstract Time: 10:00 AM - 12:00 PM

Category: CKD (Non-Dialysis)

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

Authors

  • Nyman, Elisabeth, AstraZeneca, Cambridge, United Kingdom
  • James, Glen, AstraZeneca, Cambridge, United Kingdom
  • Hedberg, Jonatan, AstraZeneca, Cambridge, United Kingdom
  • Emmas, Cathy E., AstraZeneca, Cambridge, United Kingdom
Background

Online health communities and research networks such as PatientsLikeMe (PLM) may provide important insight into understanding the real-world experiences of patients with chronic diseases, including chronic kidney disease (CKD).

Methods

Retrospective cross-sectional observational study using the PLM online health network database. Inclusion criteria were registration with PLM between 2011-2018, aged >18 years at registration, with self-reported CKD within 30 days of registration and not receiving dialysis. Information reported by patients within 30 days of registration was used to assess demographics, clinical history, comorbidities, treatments and patient reported symptoms, both general (prompted for all PLM patients) and other symptoms.

Results

1848 patients met the inclusion criteria. The median age at registration was 56 years (IQR 45-64), most patients were female (66%), and US residents (87%). The 1496 patients who recorded race were predominately Caucasian (80%) and African-American (9%). Median age at diagnosis was 47 years (IQR 33-56, N=578) and the median age of first symptom onset was 43 years (IQR 28-54, N=378). Most patients (74%, N=1374) reported at least one comorbidity (median 3 (IQR 0-4)), the most common being type 2 diabetes (57%), hypertension (48%), hypercholesterolemia (32%) and diabetic neuropathy (27%). Less than half of patients (41%) entered any symptom within 30 days of registration. General symptoms were reported by 487 patients and rated as moderate or severe by 72% for fatigue, 58% for pain, 48% for insomnia, 41% for anxious mood, and 41% for depressed mood. Additional symptoms reported by more than 15% of patients and rated moderate or severe by >30% were problems concentrating, nerve pain, and feet tingling (N=315-338). Treatments were reported by 1369 (74%) patients, the most common were for diabetes (51%) and hypertension (27%).

Conclusion

Characteristics of CKD patients in the PLM community are broadly consistent with the general US CKD population, although the percentage of females is slightly higher. PLM provides a unique source of real-world information on the patient experience beyond the clinical environment that can be utilized to improve understanding of the patient-level impact of CKD.

Funding

  • Commercial Support – AstraZeneca