Digital Health Intervention to Promote Lifelong Specialized Care in Adults With Congenital Heart Disease: Theory-Driven Community Co-Designed Study - Report - MDSpire

Digital Health Intervention to Promote Lifelong Specialized Care in Adults With Congenital Heart Disease: Theory-Driven Community Co-Designed Study

  • By

  • Anushree Agarwal

  • Joseph Valente

  • Karina Buenrostro

  • Katelyn Macholl

  • Juhi Mehta

  • Keerthana Reddy

  • Karina Manayan

  • Parang Kim

  • Aleah Sparks

  • Kunyi Li

  • Pranav Ahuja

  • Kevin Sun

  • Kimberly Payton

  • Mark D Norris

  • Katia Bravo-Jaimes

  • Leigh Reardon

  • Philip Moons

  • Megumi J Okumura

  • Gregory M Marcus

  • Michelle Gurvitz

  • June 23, 2026

  • 0 min

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Community-Designed Digital Health Strategy for Adults with Congenital Heart Disease

Background

The management of adult congenital heart disease (ACHD) is critical as this population grows, yet many patients face barriers to receiving consistent specialized care. Current interventions are often limited and resource-intensive.

Data Highlights

No specific numerical data or trial results were provided in the source material.

Key Findings

  • Up to 85% of adults with congenital heart disease experience gaps in specialized care.
  • Existing interventions are often clinic-based and resource-intensive.
  • Web- and mobile-based solutions can engage patients outside of clinic visits.
  • 94% of patients with ACHD use smartphones and are open to app-based solutions.
  • The intervention design incorporates evidence-based behavioral frameworks to promote ACHD care.

Clinical Implications

The development of a digital health intervention tailored to the needs of ACHD patients may enhance patient engagement and reduce care gaps. Understanding patient perspectives is essential for creating effective interventions that can be widely adopted.

Conclusion

A theory- and community-driven approach to digital health intervention design may significantly improve the management of ACHD by addressing barriers to care and fostering patient engagement.

Related Resources & Content

  1. American College of Cardiology/American Heart Association, JACC, 2025 -- 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease
  2. European Journal of Preventive Cardiology, 2025 -- Preventing cardiovascular complications in adults with congenital heart disease: predictors and outcomes of the levels of follow-up care
  3. JAMA Network, 2025 -- Digital Emotion Regulation Interventions for Patients With Congenital Heart Disease: A Randomized Clinical Trial
  4. Loss to Specialized Cardiology Follow-Up in Adults Living with Congenital Heart Disease, ScienceDirect, 2024
  5. Mobile health apps for home care support of children with congenital heart disease: A scoping review based on persuasive system design models
  6. Pediatric Cardiology — Teamwork as a Clinical Competency in Pediatric Cardiology: A Measurement–Feedback–Simulation Framework for Improving Decision-Making and Outcomes
  7. Pediatric Cardiology — Challenges in Counseling Approaches for Congenital Heart Defects
  8. 2025 ACC/AHA/HRS/ISACHD/SCAI Guideline for the Management of Adults With Congenital Heart Disease: A Report of the American College of Cardiology/American Heart Association Joint Committee on Clinical Practice Guidelines | JACC
  9. Loss to Specialized Cardiology Follow-Up in Adults Living with Congenital Heart Disease - ScienceDirect
  10. Digital Emotion Regulation Interventions for Patients With Congenital Heart Disease: A Randomized Clinical Trial | Mobile Health and Telemedicine | JAMA Network Open | JAMA Network

Original Source(s)

Digital Health Intervention to Promote Lifelong Specialized Care in Adults With Congenital Heart Disease: Theory-Driven Community Co-Designed Study

  • by Anushree Agarwal, Joseph Valente, Karina Buenrostro, Katelyn Macholl, Juhi Mehta, Keerthana Reddy, Karina Manayan, Parang Kim, Aleah Sparks, Kunyi Li, Pranav Ahuja, Kevin Sun, Kimberly Payton, Mark D Norris, Katia Bravo-Jaimes, Leigh Reardon, Philip Moons, Megumi J Okumura, Gregory M Marcus, Michelle Gurvitz

  • June 23, 2026

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