Development and Validation of Crohn’s Perianal Fistula Educational Videos and Website for Increasing Patient Knowledge and Engagement

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INTRODUCTION: There are few online resources that provide authoritative and comprehensive information on Crohn's perianal fistula (CPF). In this study, we aimed to use a human-centered design thinking approach to develop and validate 2 educational CPF videos and an accompanying website to support patients with CPF. METHODS: We used a design thinking approach to understand the unmet educational needs of patients with CPF. We conducted 3 rounds of interviews with a diverse sample of patients with CPF and used the resulting insights to iteratively develop 2 unbranded educational videos optimized for social media and an accompanying website. To validate the 2 videos, we performed an online survey with CPF patients to assess the impact of the videos on patient activation as measured by the patient activation measure (PAM). RESULTS: Our design thinking approach with 20 CPF patients allowed us to empathize with them, gain an in-depth understanding of their informational needs, and iteratively test and update the educational materials based on their input. Using their feedback, we created 2 videos ("What is a Crohn's perianal fistula?" and "How to treat Crohn's perianal fistula?") and a corresponding website called "Heal My Fistula." In qualitative testing, patients described both videos and the website as "accurate", "informative", "simple", "easy to understand", and in line with their expectations. In validation testing through a pre-post survey (N=357), both videos led to statistically significant improvements in PAM scores ( P <0.001). CONCLUSION: Through a human-centered design thinking approach, we developed and validated 2 informative videos and a website (healmyfistula.org) for addressing the educational needs of patients with CPF.

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