PT - JOURNAL ARTICLE AU - Agnes Kocher AU - Michael Simon AU - Andrew A Dwyer AU - Catherine Blatter AU - Jasmina Bogdanovic AU - Patrizia Künzler-Heule AU - Peter M Villiger AU - Diana Dan AU - Oliver Distler AU - Ulrich A Walker AU - Dunja Nicca TI - Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study AID - 10.1136/rmdopen-2021-001783 DP - 2021 Sep 01 TA - RMD Open PG - e001783 VI - 7 IP - 3 4099 - http://rmdopen.bmj.com/content/7/3/e001783.short 4100 - http://rmdopen.bmj.com/content/7/3/e001783.full SO - RMD Open2021 Sep 01; 7 AB - Objectives We engaged patients with systemic sclerosis (SSc) and healthcare professionals to assess electronic health (eHealth) literacy and needs relating to web-based support using internet-based information and communication technologies (ICT).Methods We employed an explanatory sequential mixed methods design. First, we conducted a cross-sectional survey in patients (n=101) and professionals (n=47). Next, we conducted three focus groups with patients, family members and professionals (n=17).Results Of patients, 89.1% used ICT at least weekly for private communication. Patients reported relatively high comprehension of eHealth information ( =6.7, 95% CI: 6.2 to 7.3, range 1–10), yet were less confident evaluating information reliability ( =5.8, 95% CI: 5.1 to 6.4) and finding eHealth apps ( =4.8, 95% CI: 4.2 to 5.4). Patients and professionals reported little experience with web-based self-management support. Focus groups revealed ‘considering non-ICT-accessible groups’ and ‘fitting patients’ and professionals’ technology’ as crucial for acceptability. In relation to understanding/appraising eHealth, participants highlighted that general SSc information is not tailored to individual’s disease course. Recommendations included ‘providing timely, understandable and safe information’ and ‘empowering end-users in ICT and health decision-making skills’. Professionals expressed concerns about lacking resources. Patients were concerned about data security and person-centredness. Key eHealth drivers included ‘addressing end-user perceptions’ and ‘putting people at the centre of technology’.Conclusions Patients and professionals need education/training to support uptake of eHealth resources. Key elements include guiding patients to timely/reliable information and using eHealth to optimise patient–provider communication. Design that is responsive to end-users’ needs and considers individuals with limited eHealth literacy and/or ICT access appears to be critical for acceptability.Data are available upon reasonable request. All data relevant to the study are included in the article or uploaded as supplementary information. The datasets generated and/or analysed during this study are included in this published article or can be made available from the corresponding author on reasonable request. The datasets generated and/or analysed during this study are included in this published article or can be made available from the corresponding author on reasonable request.