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. 2013 Mar 17;15(4):e67.
doi: 10.2196/jmir.2466.

Preferred sources of health information in persons with multiple sclerosis: degree of trust and information sought

Ruth Ann Marrie  1 , Amber R Salter, Tuula Tyry, Robert J Fox, Gary R Cutter
Affiliations

Preferred sources of health information in persons with multiple sclerosis: degree of trust and information sought

Ruth Ann Marrie et al. J Med Internet Res. .

Abstract

Background: Effective health communication is important for informed decision-making, yet little is known about the range of information sources used by persons with multiple sclerosis (MS), the perceived trust in those information sources, or how this might vary according to patient characteristics.

Objective: We aimed to investigate the sources of health information used by persons with MS, their preferences for the source of health information, and levels of trust in those information sources. We also aimed to evaluate how these findings varied according to participant characteristics.

Methods: In 2011, participants in the North American Research Committee on Multiple Sclerosis (NARCOMS) Registry were asked about their sources of health information using selected questions adapted from the 2007 Health Information National Trends (HINTS) survey.

Results: Of 12,974 eligible participants, 66.18% (8586/12,974) completed the questionnaire. Mass media sources, rather than interpersonal information sources, were the first sources used by 83.22% (5953/7153) of participants for general health topics and by 68.31% (5026/7357) of participants for MS concerns. Specifically, the Internet was the first source of health information for general health issues (5332/7267, 73.40%) and MS (4369/7376, 59.23%). In a logistic regression model, younger age, less disability, and higher annual income were independently associated with increased odds of use of mass media rather than interpersonal sources of information first. The most trusted information source was a physician, with 97.94% (8318/8493) reporting that they trusted a physician some or a lot. Information sought included treatment for MS (4470/5663, 78.93%), general information about MS (3378/5405, 62.50%), paying for medical care (1096/4282, 25.59%), where to get medical care (787/4282, 18.38%), and supports for coping with MS (2775/5031, 55.16%). Nearly 40% (2998/7521) of participants had concerns about the quality of the information they gathered.

Conclusions: Although physicians remain the most trusted source of health information for people with MS, the Internet is the first source of health information for most of them. This has important implications for the dissemination of health information.

Keywords: Internet; health information; multiple sclerosis; social media; trust.

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Conflict of interest statement

Conflicts of Interest: Ruth Ann Marrie receives research funding from: Canadian Institutes of Health Research, Public Health Agency of Canada, Manitoba Health Research Council, Health Sciences Centre Foundation, Multiple Sclerosis Society of Canada, Multiple Sclerosis Scientific Foundation, Rx & D Health Research Foundation, has conducted clinical trials funded by Bayer Inc. and Sanofi-Aventis, and serves on the Editorial Boards of Neurology and Multiple Sclerosis Journal. Amber Salter has no conflicts of interest to declare. Tuula Tyry has no conflicts of interest to declare. Robert Fox has received personal consulting fees from Avanir, Biogen Idec, Novartis, Questcor, and Teva Neurosciences; has served on clinical trial advisory committees for Biogen Idec and Novartis; has received research support from the National Multiple Sclerosis Society (RG 4091A3/1; RG 4103A4/2; RC 1004-A-5) and Novartis; and serves on the editorial boards of Neurology and Multiple Sclerosis Journal. Gary Cutter has served on scientific advisory boards for and/or received funding for travel from Alexion, Allozyne, Bayer, Celgene, Consortium of MS Centers, Coronado Biosciences, Diogenix, Klein-Buendel Incorporated, Merck, Novartis, Nuron Biotech, Receptos, Somnus Pharmaceuticals, Spinifex Pharmaceuticals, St. Louis University, Teva pharmaceuticals; receives royalties from publishing Evaluation of Health Promotion and Disease Prevention (The McGraw Hill Companies, 1984); has received honoraria from GlaxoSmithKline, Novartis, Advanced Health Media Inc, Biogen Idec, EMD Serono Inc, EDJ Associates, Inc, the National Heart, Lung, and Blood Institute, National Institute of Neurological Diseases and Stroke, National Marrow Donor Program, Consortium of Multiple Sclerosis Centers; serves as a consultant to Novartis, National Industrial Sand Association, Bayer Pharmaceuticals, and Teva Pharmaceuticals Industries Ltd.; has served on independent data and safety monitoring committees for Apotek, Biogen, Cleveland Clinic, EliLilly, Glaxo Smith Klein Pharmaceuticals, Medivation, Modigenetech, NHLBI, NINDS, NMSS, Ono Pharmaceuticals, Prolor, Sanofi-Aventis, Teva.

Figures

Figure 1
Figure 1
Degree of trust in various information sources.
See this image and copyright information in PMC

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