Marrie Ruth Ann, Salter Amber R, Tyry Tuula, Fox Robert J, Cutter Gary R
University of Manitoba, Department of Internal Medicine, Winnipeg, MB, Canada.
J Med Internet Res. 2013 Mar 17;15(4):e67. doi: 10.2196/jmir.2466.
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.
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.
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.
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.
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.
有效的健康沟通对于做出明智的决策很重要，但对于多发性硬化症（MS）患者使用的信息来源范围、对这些信息来源的信任程度，或者这可能如何因患者特征而异，人们了解得很少。
我们旨在调查MS患者使用的健康信息来源、他们对健康信息来源的偏好以及对这些信息来源的信任程度。我们还旨在评估这些结果如何因参与者特征而异。
2011年，北美多发性硬化症研究委员会（NARCOMS）登记处的参与者被问及他们的健康信息来源，使用的是从2007年健康信息国家趋势（HINTS）调查中改编的选定问题。
在12974名符合条件的参与者中，66.18%（8586/12974）完成了问卷。大众媒体来源而非人际信息来源是83.22%（5953/7153）的参与者用于一般健康主题的首要信息来源，也是68.31%（5026/7357）的参与者用于MS相关问题的首要信息来源。具体而言，互联网是用于一般健康问题（5332/7267，73.40%）和MS（4369/7376，59.23%）的首要健康信息来源。在逻辑回归模型中，年龄较小、残疾程度较轻和年收入较高与首先使用大众媒体而非人际信息来源的几率增加独立相关。最受信任的信息来源是医生，97.94%（8318/8493）的参与者表示他们或多或少信任医生。寻求的信息包括MS的治疗（4470/5663，78.93%）、关于MS的一般信息（3378/5405，62.50%）、医疗费用支付（1096/4282，25.59%）、何处获得医疗服务（787/4282，18.38%）以及应对MS的支持（2775/5031，55.16%）。近40%（2998/7521）的参与者对他们收集的信息质量表示担忧。
尽管医生仍然是MS患者最信任的健康信息来源，但互联网是他们大多数人获取健康信息的首要来源。这对健康信息的传播具有重要意义。
