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Accepted for/Published in: JMIR Medical Informatics

Date Submitted: Jun 21, 2023
Open Peer Review Period: Jun 21, 2023 - Aug 16, 2023
Date Accepted: Mar 25, 2024
(closed for review but you can still tweet)

The final, peer-reviewed published version of this preprint can be found here:

An Electronic Health Record–Integrated Application for Standardizing Care and Monitoring Patients With Autosomal Dominant Polycystic Kidney Disease Enrolled in a Tolvaptan Clinic: Design and Implementation Study

Chedid M, Chebib F, Dahlen E, Mueller T, Schnell T, Gay M, Hommos M, Swaminathan S, Garg A, Mao M, Amberg B, Baldares K, Johnson K, Bishop A, Vaughn J, Hogan M, Torres V, Chaudhry R, Zoghby Z

An Electronic Health Record–Integrated Application for Standardizing Care and Monitoring Patients With Autosomal Dominant Polycystic Kidney Disease Enrolled in a Tolvaptan Clinic: Design and Implementation Study

JMIR Med Inform 2024;12:e50164

DOI: 10.2196/50164

PMID: 38717378

PMCID: 11085039

Standardizing care and monitoring ADPKD patients enrolled in a Tolvaptan clinic using an intelligent automated electronic health record application

  • Maroun Chedid; 
  • Fouad Chebib; 
  • Erin Dahlen; 
  • Theodore Mueller; 
  • Theresa Schnell; 
  • Melissa Gay; 
  • Musab Hommos; 
  • Sundararaman Swaminathan; 
  • Arvind Garg; 
  • Michael Mao; 
  • Brigid Amberg; 
  • Kirk Baldares; 
  • Karen Johnson; 
  • Alyssa Bishop; 
  • Jackqueline Vaughn; 
  • Marie Hogan; 
  • Vicente Torres; 
  • Rajeev Chaudhry; 
  • Ziad Zoghby

ABSTRACT

Background:

Tolvaptan is the only FDA-approved drug to slow the progression of autosomal dominant polycystic kidney disease (ADPKD), but its use requires strict clinical monitoring due to potential serious adverse events.

Objective:

We share our experience in developing and implementing an electronic health record (EHR) based application to efficiently monitor patients with ADPKD initiated on Tolvaptan.

Methods:

The application was developed in collaboration with clinical informatics based on our clinical protocol with frequent laboratory monitoring to detect early drug-related toxicity. The application streamlines clinical workflow and enables our nursing team to take appropriate actions in real-time to prevent drug-related serious adverse events. We retrospectively analyzed the characteristics of enrolled patients.

Results:

As of September 2022, 214 patients were enrolled in the Tolvaptan program across all Mayo Clinic sites. Of these, 126 were enrolled in the “Tolvaptan monitoring application” and 88 in the “Past Tolvaptan patients’ application”. The mean age at enrollment was 43.1±9.9 years. The two EHR-based applications allow consolidation of all necessary patient information and real-time data management at the individual or population level. This approach ensures efficient staff workflow, monitoring of drug-related adverse events, and timely prescription renewal.

Conclusions:

Our study demonstrates the feasibility of integrating digital applications into the EHR workflow, facilitating efficient and safe care delivery for patients enrolled in a drug monitoring program. This workflow can be extended to other healthcare systems for similar programs of chronic disease management, to ensure that all eligible patients can safely receive the best available treatment for their condition. Clinical Trial: N/A


 Citation

Please cite as:

Chedid M, Chebib F, Dahlen E, Mueller T, Schnell T, Gay M, Hommos M, Swaminathan S, Garg A, Mao M, Amberg B, Baldares K, Johnson K, Bishop A, Vaughn J, Hogan M, Torres V, Chaudhry R, Zoghby Z

An Electronic Health Record–Integrated Application for Standardizing Care and Monitoring Patients With Autosomal Dominant Polycystic Kidney Disease Enrolled in a Tolvaptan Clinic: Design and Implementation Study

JMIR Med Inform 2024;12:e50164

DOI: 10.2196/50164

PMID: 38717378

PMCID: 11085039

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