科研之友
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摘要
Objective. Tight control in RA necessitates frequent disease monitoring; patients might participate by self-assessment of their functional status. Therefore, we assessed the feasibility and acceptability of autonomous online registry of physical functioning. %26lt;br%26gt;Methods. In two tertiary-care centres (in the Netherlands and France), consecutive RA patients were approached to perform autonomous registry of the HAQ in an electronic medical record. Feasibility and acceptability of autonomous HAQ registry was assessed through: (i) the percentage of acceptances; (ii) the time needed to register the HAQ (the Netherlands); (iii) patient satisfaction with autonomous registry; and (iv) willingness for future home-based HAQ completion, either self-declared (the Netherlands) or actual file access from home within 6 months (France). %26lt;br%26gt;Results. In all, 214 patients were approached; 163 agreed to participate; 137 (64% of 214) had complete data that were analysed. Median age was 56 years (range 20-78 years), 80% were female, median disease duration was 9 years. The median time needed to fill in the HAQ in the waiting room was 5.8 min; patient satisfaction was high (mean score 4.1 out of 5), self-declared willingness for autonomous registry at home was 73%. In the 6-month follow-up period, 46% of patients accessed their medical file from home at least once. %26lt;br%26gt;Conclusion. Many RA patients reported willingness to self-monitor their disease online, but fewer than half of the patients actually did. To enhance patient autonomous monitoring, progress is needed in terms of Internet access, continuous patient support and, importantly, convincing patients that they will benefit from autonomous monitoring.
- 出版日期2013-5
