VA-Comm: Developing and Piloting a Novel Communication Tool for Complex Lymphatic Anomalies and Lymphatic...

Area of Science:

• Medical Informatics
• Rare Diseases
• Patient Communication

Background:

• Complex lymphatic anomalies (CLAs) and lymphatic malformations (LMs) are rare diseases causing lifelong complications.
• Effective communication is crucial for safe care, yet families often face insufficient information.
• Existing communication gaps necessitate innovative solutions for rare disease management.

Purpose of the Study:

• To develop and pilot VA-Comm, a communication tool integrated into electronic health records.
• To assess the feasibility, usability, and impact of VA-Comm on patient-provider communication.
• To improve information access and reduce anxiety for families managing CLAs and LMs.

Main Methods:

• Participatory design workshops involved parents, patients, and physicians to develop CLA- and LM-specific VA-Comm versions.
• Usability testing was conducted before piloting the tool with 22 participants (18 parents, 4 adult patients).
• Pre- and post-intervention surveys and interviews evaluated communication, care coordination, and user experience.

Main Results:

• Participants completed an average of 70% of tasks, indicating good usability.
• Parental anxiety significantly decreased post-intervention (p = 0.01).
• VA-Comm was highly rated for acceptability and appropriateness, with positive feedback on usefulness and ease of use.

Conclusions:

• The implementation of VA-Comm was feasible and well-received by participants.
• VA-Comm demonstrates potential as a valuable framework for enhancing communication in serious illnesses.
• The tool's success suggests a pathway for improving patient and family support in managing rare diseases.