Assessment of the Sources of Information by Patients With Rheumatic Diseases

Abstract

The aim of this study was to ascertain the frequency of use, search intent (SI), level of accessibility, and degree of reliability of sources of information (SOIs) in rheumatology. Methods:A survey among adult outpatients with rheumatoid arthritis, systemic lupus erythematosus, systemic sclerosis, and spondyloarthritis was conducted. They were asked if they had procured information from 12 selected SOIs during the past year. Search intent was defined as the source they would like to consult. Accessibility and reliability were assessed through 0-to-10 scales (minimum and maximum, respectively).Results: Four hundred two patients were surveyed. They had consulted a median of 3 SOIs (interquartile range, 2-6) but described a higher SI: median of 5 SOIs (interquartile range 3-8); p = 0.001.The most consulted SOIs were the physician (83%), other patients (45%), and Facebook (36%). The main differences between SI and the searches actually performed were observed in community lectures by health care professionals (49%), scientific societies (48%), and associations of patients (27%); p < 0.001. These 3 sources showed low level of accessibility. Facebook, press, radio, and YouTube were the least reliable sources.Conclusions: Patients consulted a median of 3 SOIs but reported a significantly higher SI. Although patients demand more information, the request is leveled at SOIs with difficult accessibility but high reliability.

Social media as source of information for Spanish-speaking patients with systemic lupus erythematosus

“…4 A study from Argentina reported that 36% of patients with rheumatic diseases used Facebook ® as a source of information, just behind their physician and other patients. 5 In the same vein, Callejas-Rubio JL et al reported that up to 70% of Spanish patients with systemic lupus erythematosus (SLE) used the Internet to search for information on their disease. 6 The use of SoMe by patients as health-care information sources may present both benefits and barriers.…”

“…6 The use of SoMe by patients as health-care information sources may present both benefits and barriers. On the one hand, among the numerous potential benefits SoMe provides, we highlight that they (1) facilitate sharing of information and experiences, thus helping community building; (2) enable disadvantaged populations (i.e., rural, low income, and older adults) to access information and reliable health-care experts; (3) support the exchange and spread of valuable health-care information; (4) may foster patient engagement in the development of health policies; (5) may provide access to patient's opinion on the relevance of research agenda on a specific disease; and (6) offer a platform for medical education and networking for both patients and health-care providers. [7][8][9] Recent evidence supports these benefits.…”