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

Background: Complex lymphatic anomalies (CLAs) and lymphatic malformations (LMs) are rare diseases that cause lifelong complications. High-quality communication is essential for providing safe and effective care, but many families report insufficient communication and unreliable information. We aimed to develop and pilot a communication tool embedded within an electronic health record system. Methods: We developed separate versions of VA-Comm for CLAs and LMs through participatory design workshops, including three workshops with parents and adult patients (n = 9) and two workshops with expert physicians (n = 10). We performed usability testing (n = 5) prior to finalizing the tool. We then piloted VA-Comm with 22 participants (18 parents and 4 adult patients). We administered surveys with communication and care coordination measures pre- and post-intervention, as well as performing post-intervention interviews. Results: Participants completed 70% of tasks on average, and 14/22 participants completed 70% of tasks. Pre-/Post surveys demonstrated a statistical improvement in parental anxiety (mean decrease by 4.6 T-score points, p = 0.01). No other survey score differences were statistically significant, but nearly all responses directionally improved. VA-Comm was rated as highly acceptable (parent mean = 17.5/20, SD = 1.8; patient mean = 18.3/20, SD = 2.1) and appropriate (parent mean = 17.3/20, SD = 1.8; patient mean = 18.0/20, SD = 2.0). Post-intervention interviews with 18 participants provided feedback on VA-Comm components and identified 3 factors influencing usage: usefulness, ease of use, and personal characteristics and circumstances. Conclusion: Implementing VA-Comm was feasible, and participants held positive views on the usefulness and ease of use. VA-Comm can serve as a framework for improving communication in other serious illnesses.