Improving disease knowledge of primary sclerosing cholangitis patients and their relatives with a 3-dimensional education video.

OBJECTIVE: Primary sclerosing cholangitis is a severe liver disease. Liver transplantation is the only curative therapeutic option. The unpredictable disease course causes much uncertainty and anxiety among patients and relatives. Improved disease knowledge may result in better health outcomes. In PSC, there is lack of high quality patient education materials. The aim of this study was to evaluate the ability of a 3-dimensional education video to improve PSC knowledge in patients and relatives. METHODS: A digital survey containing questions about PSC, anxiety and satisfaction was sent prior to, directly after, and one week after watching the video. Both European and American patients and relatives were included. RESULTS: A total of 278 participants (224 patients and 54 relatives) were included. PSC knowledge score increased from 53 % to 74 % directly after and 70 % one week after the video. The STAI anxiety score decreased after the video (-0,8, p = 0,007). Younger age and lower baseline knowledge were independent predictors of knowledge improvement. CONCLUSION: Disease knowledge improved after watching the video and this was sustained one week later. Generally, patients were very enthusiastic about the video. PRACTICE IMPLICATIONS: 3D education videos can be useful to increase disease knowledge in a severe disease such as PSC.