Department of Medicine, Lenox Hill Hospital, New York, NY, USA.
J Altern Complement Med. 2010 Feb;16(2):183-6. doi: 10.1089/acm.2009.0354.
With increasing frequency, patients with cancer and their family members are turning to the Internet to educate themselves about their disease and treatment options, including complementary and alternative medicine (CAM) and supportive care. However, very little is known about how national leading cancer centers represent these therapies via their websites.
Simulating the perspective of an information-seeking patient or family member, we performed a systematic analysis of the websites of 41 National Cancer Institute designated comprehensive cancer centers. Two researchers independently evaluated websites, recorded CAM information, and rated quality of the websites using a 4-item Likert scale (overall, information, presentation, and navigation) with Cronbach's alpha = 0.97. Rating was adequately correlated between the two raters (correlation coefficient 0.8).
Of 41 centers, 12 (29%) did not have functional websites with regard to information related to CAM. The most common CAM approaches mentioned were: acupuncture (59%), meditation/nutrition/spiritual support/yoga (56% for each), massage therapy (54%), and music therapy (51%). Twenty-three (23; 56%) presented information on support groups, 19 (46%) on patient seminars, 18 (44%) on survivorship effort, and 17 (41%) on symptom management clinics. Twenty-nine (29) (71%) of these websites had a telephone number available, 22 (54%) mentioned at least one ongoing research opportunity, and 19 (46%) provided links to the National Center for Complementary and Alternative Medicine website. Median rating of the quality of websites was 50 of 100, with only 7 (17%) of centers receiving a composite score 80 (excellent) or better.
While a growing number of leading cancer centers provide information about CAM and supportive oncology information for patients via their websites, the quality and ease of navigation of these sites remain highly variable. Effective development and redesign of many of the websites is needed to better inform and empower patients and families seeking CAM and supportive care information.
越来越多的癌症患者及其家属通过互联网来了解自身疾病和治疗选择，包括补充和替代医学（CAM）和支持性护理。然而，对于国家领先的癌症中心如何通过其网站来展示这些疗法，我们知之甚少。
我们模拟寻求信息的患者或家属的视角，对 41 家美国国立癌症研究所指定的综合性癌症中心的网站进行了系统分析。两位研究人员独立评估网站，记录 CAM 信息，并使用 4 项李克特量表（整体、信息、呈现和导航）对网站质量进行评分（Cronbach's alpha = 0.97），评分者之间的评分具有良好的相关性（相关系数为 0.8）。
在 41 家中心中，有 12 家（29%）的网站在与 CAM 相关的信息方面功能不完善。提到的最常见的 CAM 方法是：针灸（59%）、冥想/营养/精神支持/瑜伽（每种 56%）、按摩疗法（54%）和音乐疗法（51%）。23 家（56%）提供支持小组的信息，19 家（46%）提供患者研讨会的信息，18 家（44%）提供生存努力的信息，17 家（41%）提供症状管理诊所的信息。29 家（29%）（71%）这些网站提供了电话号码，22 家（54%）提到至少有一个正在进行的研究机会，19 家（46%）提供了国家补充和替代医学中心网站的链接。网站质量的中位数评分为 100 分中的 50 分，只有 7 家（17%）中心的综合得分为 80 分（优秀）或更高。
虽然越来越多的领先癌症中心通过其网站为患者提供关于 CAM 和支持性肿瘤学的信息，但这些网站的质量和导航易用性仍然存在很大差异。需要对许多网站进行有效的开发和重新设计，以更好地为寻求 CAM 和支持性护理信息的患者和家属提供信息和赋权。
