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Text Messaging for Disease Monitoring in Childhood Nephrotic Syndrome
Chia-Shi Wang1, Jonathan P Troost2, Larry A Greenbaum1
1Department of Pediatrics, Emory University and Children's Healthcare of Atlanta, Atlanta, Georgia, USA.
Insights
Text messaging systems (SMS) effectively monitor childhood nephrotic syndrome, improving relapse detection and remission time. This novel approach shows high patient acceptance and reliable disease activity capture between visits.
Area of Science:
- Pediatric Nephrology
- Digital Health
- Clinical Trial Methodology
Background:
- Limited data exists on effective disease monitoring for prompt intervention in childhood nephrotic syndrome.
- A multicenter, prospective study investigated a novel text messaging system (SMS) for disease monitoring.
Purpose of the Study:
- To assess the feasibility and effectiveness of an SMS system for monitoring nephrotic syndrome in children.
- To evaluate SMS adoption, retention, engagement, and data concordance with clinical assessments.
Main Methods:
- 127 pediatric patients (<19 years) with incident nephrotic syndrome were enrolled.
- Caregivers or adolescent patients received SMS prompts for urine protein, symptoms, and adherence.
- SMS data was compared with laboratory/clinician assessments and conventional visit data.
Main Results:
- 94% of patients agreed to SMS monitoring, with a 94% retention rate and high engagement (87% median response rate).
- Excellent concordance was observed between SMS-reported and in-person assessed urine protein (kappa=0.88) and edema (kappa=0.92).
- SMS detected more relapses (108 vs. 41) and showed a shorter median time to remission (22 vs. 50 days) compared to scheduled visits.
Conclusions:
- SMS monitoring is well-accepted by caregivers and adolescent patients.
- The system reliably captures nephrotic syndrome disease activity between clinic visits.
- Further research is needed to explore the impact of SMS on disease outcomes.
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.
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