Abdulla Susanne, Vielhaber Stefan, Machts Judith, Heinze Hans-Jochen, Dengler Reinhard, Petri Susanne
Department of Neurology, Otto-von-Guericke University Magdeburg , Germany.
Amyotroph Lateral Scler Frontotemporal Degener. 2014 Dec;15(7-8):505-12. doi: 10.3109/21678421.2014.932385. Epub 2014 Jul 10.
Our objective was to investigate information-seeking behaviour in patients with ALS and their caregivers and their rating of the usefulness of different information sources in Germany. Surveys were made on 106 patients and 100 caregivers in two university ALS outpatient clinics. Before seeing a doctor, 28% of patients and 23% of caregivers had used other sources to find symptom related information, mostly the internet. Although two-thirds were satisfied with the means of diagnosis disclosure, 88% of patients and 85% of caregivers searched for additional information, most often the internet (patients 72%, caregivers 85%), followed by patient brochures (patients 58%, caregivers 66%). Internet, patient brochures and the 'German Neuromuscular Disease Society' were rated most frequently as useful/very useful. Traditional print media and interpersonal contacts were also frequently used and most respondents relied on more than one source for information. Only few respondents used the internet for exchange with other patients. Two-thirds wanted to discuss web contents with their physician. In conclusion, patients with ALS and their caregivers clearly have additional information needs. Besides traditional information sources, the internet is frequently used. Therefore, reliable and useful websites should be provided. Patients' and caregivers' need to discuss their findings with the physician should be acknowledged.
我们的目标是调查德国肌萎缩侧索硬化症（ALS）患者及其照料者的信息寻求行为，以及他们对不同信息来源有用性的评级。我们对两家大学ALS门诊诊所的106名患者和100名照料者进行了调查。在看医生之前，28%的患者和23%的照料者曾使用其他来源查找与症状相关的信息，其中大部分是互联网。尽管三分之二的人对诊断披露方式感到满意，但88%的患者和85%的照料者仍会搜索更多信息，最常使用的是互联网（患者为72%，照料者为85%），其次是患者宣传册（患者为58%，照料者为66%）。互联网、患者宣传册和“德国神经肌肉疾病协会”被评为最有用/非常有用的频率最高。传统印刷媒体和人际交流也经常被使用，大多数受访者依赖不止一种信息来源。只有少数受访者使用互联网与其他患者交流。三分之二的人希望与他们的医生讨论网页内容。总之，ALS患者及其照料者显然有额外的信息需求。除了传统信息来源外，互联网也经常被使用。因此，应该提供可靠且有用的网站。应该认识到患者和照料者需要与医生讨论他们的发现。
