Beschreibung:
<jats:sec><jats:title>Objectives</jats:title><jats:p>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).</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>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).</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>Of patients, 89.1% used ICT at least weekly for private communication. Patients reported relatively high comprehension of eHealth information (<jats:inline-formula><m:math xmlns:m="http://www.w3.org/1998/Math/MathML" overflow="scroll"><m:mstyle displaystyle="true" scriptlevel="0"><m:mrow><m:mrow><m:mover><m:mi>x</m:mi><m:mo stretchy="false">¯</m:mo></m:mover></m:mrow></m:mrow></m:mstyle></m:math></jats:inline-formula>=6.7, 95% CI: 6.2 to 7.3, range 1–10), yet were less confident evaluating information reliability (<jats:inline-formula><m:math xmlns:m="http://www.w3.org/1998/Math/MathML" overflow="scroll"><m:mstyle displaystyle="true" scriptlevel="0"><m:mrow><m:mrow><m:mover><m:mi>x</m:mi><m:mo stretchy="false">¯</m:mo></m:mover></m:mrow></m:mrow></m:mstyle></m:math></jats:inline-formula>=5.8, 95% CI: 5.1 to 6.4) and finding eHealth apps (<jats:inline-formula><m:math xmlns:m="http://www.w3.org/1998/Math/MathML" overflow="scroll"><m:mstyle displaystyle="true" scriptlevel="0"><m:mrow><m:mrow><m:mover><m:mi>x</m:mi><m:mo stretchy="false">¯</m:mo></m:mover></m:mrow></m:mrow></m:mstyle></m:math></jats:inline-formula>=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<jats:italic>’</jats:italic>and ‘fitting patients’ and professionals’ technology<jats:italic>’</jats:italic>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<jats:italic>’</jats:italic>and ‘empowering end-users in ICT and health decision-making skills<jats:italic>’</jats:italic>. Professionals expressed concerns about lacking resources. Patients were concerned about data security and person-centredness. Key eHealth drivers included ‘addressing end-user perceptions<jats:italic>’</jats:italic>and ‘putting people at the centre of technology<jats:italic>’</jats:italic>.</jats:p></jats:sec><jats:sec><jats:title>Conclusions</jats:title><jats:p>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.</jats:p></jats:sec>