Text Messaging for Disease Monitoring in Childhood Nephrotic Syndrome

Chia shi Wang, Jonathan P. Troost, Larry A. Greenbaum, T. Srivastava, Kimberly Reidy, Keisha Gibson, Howard Trachtman, John D. Piette, Christine B. Sethna, K. Meyers, Katherine M. Dell, Cheryl L. Tran, Suzanne Vento, Krishna Kallem, E. Herreshoff, Sangeeta Hingorani, K. Lemley, Gia Oh, Elizabeth Brown, Jen Jar LinFrederick Kaskel, Debbie S. Gipson

Research output: Contribution to journalArticlepeer-review

9 Scopus citations


Introduction: There is limited information on effective disease monitoring for prompt interventions in childhood nephrotic syndrome. We examined the feasibility and effectiveness of a novel text messaging system (SMS) for disease monitoring in a multicenter, prospective study. Methods: A total of 127 patients <19 years with incident nephrotic syndrome were enrolled in the ongoing Nephrotic Syndrome Study Network between June 2015 and March 2018. Text messages soliciting home urine protein results, symptoms, and medication adherence were sent to a designated caregiver (n = 116) or adolescent patient (n = 3). Participants responded by texting. Feasibility of SMS was assessed by SMS adoption, retention, and engagement, and concordance between participant-reported results and laboratory/clinician assessments. The number of disease relapses and time-to-remission data captured by SMS were compared with data collected by conventional visits. Results: A total of 119 of 127 (94%) patients agreed to SMS monitoring. Retention rate was 94%, with a median follow-up of 360 days (interquartile range [IQR] 353–362). Overall engagement was high, with a median response rate of 87% (IQR, 68–97). Concordance between SMS-captured home urine protein results and edema status with same-day in-person study visit was excellent (kappa values 0.88 and 0.92, respectively). SMS detected a total of 108 relapse events compared with 41 events captured by scheduled visits. Median time to remission after enrollment was 22 days as captured by SMS versus 50 days as captured by scheduled visits. Conclusion: SMS was well accepted by caregivers and adolescent patients and reliably captured nephrotic syndrome disease activity between clinic visits. Additional studies are needed to explore the impact of SMS on disease outcomes.

Original languageEnglish (US)
Pages (from-to)1066-1074
Number of pages9
JournalKidney International Reports
Issue number8
StatePublished - Aug 2019


  • caregivers
  • children
  • health status
  • mobile health
  • nephrotic syndrome
  • text messaging

ASJC Scopus subject areas

  • Nephrology


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