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Kidney Int Rep. 2019 May 7;4(8):1066-1074. doi: 10.1016/j.ekir.2019.04.026. eCollection 2019 Aug.

Text Messaging for Disease Monitoring in Childhood Nephrotic Syndrome.

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Department of Pediatrics, Emory University and Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, Michigan, USA.
Department of Pediatrics, Children's Mercy Hospital and University of Missouri at Kansas City, Kansas City, Missouri, USA.
Department of Pediatrics, Montefiore Medical Center, New York, New York, USA.
Department of Medicine and Pediatrics, University of North Carolina, Chapel Hill, North Carolina, USA.
Department of Pediatrics, NYU School of Medicine, New York, New York, USA.
Department of Health Behavior & Health Education, University of Michigan, Ann Arbor, Michigan, USA.
Department of Pediatrics, Cohen Children's Medical Center of New York, New Hyde Park, New York, USA.
Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
Department of Pediatrics, Case Western Reserve University, Cleveland Clinic Children's, Cleveland, Ohio, USA.
Department of Pediatrics, Mayo Clinic, Rochester, Minnesota, USA.
Department of Pediatrics, Seattle Children's Hospital, Seattle, Washington, USA.
Department of Pediatrics, Children's Hospital-LA, Los Angeles, California, USA.
Department of Pediatrics, Stanford University, Palo Alto, California, USA.
Department of Pediatrics, UT Southwestern Medical Center, Dallas, Texas, USA.
Department of Pediatrics, Wake Forest University, Winston-Salem, North Carolina, USA.



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.


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.


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.


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.


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

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