Patient and healthcare professional eHealth literacy and needs for systemic sclerosis support: a mixed methods study

Abstract

ObjectivesWe 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).MethodsWe 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).ResultsOf patients, 89.1% used ICT at least weekly for private communication. Patients reported relatively high comprehension of eHealth information (x¯ =6.7, 95% CI: 6.2 to 7.3, range 1–10), yet were less confident evaluating information reliability (x¯ =5.8, 95% CI: 5.1 to 6.4) and finding eHealth apps (x¯ =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’.ConclusionsPatients 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.

Disseminating and assessing implementation of the EULAR recommendations for patient education in inflammatory arthritis: a mixed-methods study with patients’ perspectives

“…Our data were collected before the COVID-19 pandemic when largely, patients and professionals lacked experience and rarely used online information for health and care decisions. This agrees with previous studies looking at eHealth and Telehealth literacy in rheumatology 20 21. Current studies22 23 have shown that patients are open to mHealth technologies in care.…”

Digital Health Competencies Among Health Care Professionals: Systematic Review

“…A total of 1304 studies were identified from literature searches, of which 26 met the inclusion criteria (Figure 1). The majority were cross-sectional studies, of which 11 [24][25][26][27][28][29][30][31][32][33][34] were considered prevalence data studies, and 13 [35][36][37][38][39][40][41][42][43][44][45][46][47] as analytical cross-sectional studies (Table 1). Among the remaining ones, 2 were experimental studies [48,49].…”

“…Among the remaining ones, 2 were experimental studies [48,49]. The studies included were conducted over a wide range of years, from 1999 [25] to 2021 [27], and more than 65% (17/26) of them [26][27][28]32,33,35,37,39,40,42,44] have been published in the last 5 years.…”

“…A total of 8 studies [26,32,36,38,41,42,47,49] involved nurses and 7 [25,27,28,33,39,44,45] covered health care professionals, while the others involved specific roles (eg, psychiatrists [40], pharmacists [31], maternal and child professionals [30]; Tables 1 and 2). The sample size was variable across the studies, ranging from 36 [30] to 5209 participants [39] with a variable age range from 20 [36] to 68 years [27].…”

“…As many as 13/26 studies [27][28][29][30][35][36][37][38]42,44,46,47,49] reported the definitions of the concept assessed, which were retrieved from the "Methods" section in 8 studies [30,35,37,42,44,46,47,49].…”