Health-related Internet use by lupus patients in southern Spain

Abstract

Internet has become a widely used tool by patients seeking information on different diseases. The information regarding lupus patients' Internet use is scarce. This study aims to explore the attitudes and practices of lupus patients in southern Spain, regarding Internet use to find health-related information. A survey was carried out including 150 patients from six Andalusian Hospitals. To search for information, 67.3 % of the patients used Internet. The proportion of female Internet users was higher (69.3 vs 46.2 %), particularly those belonging to a patients' association (81.8 vs 32.7 %), and are regular users of Internet (80.2 vs 44.4 %); 37.5 % thought the information found in the Internet was of little use or not useful at all, and 58 % of the respondents stated that the information found caused them concern while for 27 %, it was a relief. Most patients preferred the information given by their physicians (63.6 %); 33.9 % considered that the information from both sources was complementary, and 2.5 % preferred the information obtained from the Internet. A percentage of 85.3 of the patients would like their physicians to provide them with information on high-quality sites regarding their illness. Lupus patients make frequent use of the Internet to look for information on their disease. Considering this, and because better-informed patients follow more precisely the indications given by the physician, medical staff should collaborate in the development of high-quality sites for the patient to have additional sources of information.

Characteristics and information searched for by French patients with systemic lupus erythematosus: A web-community data-driven online survey

“…1 A second finding was that members of the SLE community were very active in terms of exchanges, and that analysis of the posts gave indications of the most frequent issues that interested SLE patients in everyday life. 9 As an example, it was noticeable that sexuality was one of the ten most popular threads, a topic that is rarely addressed by SLE patients with their healthcare providers. In France, a survey was conducted of members of SLE patients' associations to evaluate the main topics of interest to be included in a therapeutic programme dedicated to SLE in a national reference centre.…”

Mobile health technologies for the management of systemic lupus erythematosus: a systematic review

“…Of the included studies, 10 (48%) were observational, 4 (19%) were qualitative, 3 (14%) were reviews, 2 (9.5%) were randomized trials, and 2 (9.5%) were study protocols for future randomized trials. 10,[22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37][38][39][40][41] The detailed characteristics of the included studies are described in Table 4. Among studies specifying a sample size, the median (range) number of SLE patients included was 84 (1-153).…”

“…Seven of these studies (33.3%) identified a need for more interactive educational platforms with high-quality information, two (9.5%) demonstrated a need for the development of novel methods of disease monitoring, and two (9.5%) established a need for sources of support such as virtual communities. [24][25][26][27][28]30,32,34,35,39 Randomized Trials using mHealth technologies for SLE…”

Analysis of Tweets Containing Information Related to Rheumatological Diseases on Twitter

“…Furthermore, rheumatic diseases are an area of active medical research that have obtained relevant advances in the understanding of the pathogenesis, diagnosis and treatment of the diseases in recent years [12][13][14][15][16]. Furthermore, it has been shown the frequent use of internet by patients with rheumatic diseases [38,39]. Thus, in this study it Figure 3.…”

“…Furthermore, rheumatic diseases are an area of active medical research that have obtained relevant advances in the understanding of the pathogenesis, diagnosis and treatment of the diseases in recent years [12][13][14][15][16]. Furthermore, it has been shown the frequent use of internet by patients with rheumatic diseases [38,39]. Thus, in this study it has been investigated the interest of Twitter users for six relevant diseases with high prevalence such as OA, RA, SpA and SS or with high potential impact on patient survival such as vasculitis and SLE.…”