患者如何通过脸谱网来寻求肾捐赠
2012-05-28 12:00:00   来源： 丁香园   作者：  评论：0 点击：

Loyola University Medical Center researchers are reporting one of the first studies to examine howpatients and families are soliciting living kidney donors on Facebook.

芝加哥洛约拉大学医学研究中心的研究者首次报道患者及家属如何用用脸谱网来寻求肾源。

Researchers examined 91 Facebook pages that wereseeking kidney donations for patients ranging in age from 2 to 69.

研究者在脸谱网翻阅91页发现寻求肾源的患者年龄在2岁到69岁之间。

Twelve percent of the pages reported receiving akidney transplant and 30 percent reported that potential donors had steppedforward to be tested to determine whether they were compatible. One pagereported that more than 600 people had been tested as potential donors for ayoung child.

12%的网页上发布有求助肾源的信息，其中30%的潜在捐献者已经准备接受检查，看是否与受体匹配。

Results were reported at a meeting of theNational Kidney Foundation by kidney specialist Alexander Chang, MD.

肾脏病专家亚历山大.张在一次全国肾脏基金会议上报道了这一结果。

Chang and colleagues were unable to determineexactly how much Facebook contributed to making successful solicitations. Changnoted that donors and families also used other tactics, such as seeking newscoverage.

张和同事无法准确评估脸谱网为成功的肾源作出了多少贡献。张称捐赠者及家属也在运用其他策略，比如寻找新的新闻报导。

On pages in which relationships could bedetermined, 37 percent of the pages were created by patients, 31 percent bytheir children and 32 percent by other family or friends.

网页上的求助信息37%是由患者本人发布，31%由患者的孩子，32%由其他家庭成员或者朋友。

There was a broad range in how much personalinformation people disclosed. Some pages simply asked people to donate, withoutproviding any other information. Other pages provided great detail aboutpatients who needed kidneys, including explicit medical histories, familyphotos and emotional accounts of hospital stays, emergency room visits,financial problems and the difficulties of living on dialysis.

求助中提供的个人信息具体程度是截然不同，在有些网页仅仅是要求人们捐赠而没有提供任何其他信息，其他一些网页则提供了求助肾源患者的具体信息，包括具体的医疗记录、家庭照片、以及住院期间的情绪描述、急救次数、经济问题以及透析过程中的其他困难。

The researchers began their study in October2011. They noted that on May 1, 2012, Facebook announced an organ donationinitiative that allows users to post their organ donation status, lettingfriends know that they have signed up with their state registry to donate theirorgans after they die.

研究者们在2011年10月开始调查研究。他们称脸谱网在2012年5月1日启动了器官捐赠倡议活动，让用户贴出自身的器官状态，让朋友们知道自己已经利用身份注册号签署了同意死后捐赠器官的协议。

Patients who were successful in soliciting peopleto be tested for donation were more likely to be white, have polycystic kidneydisease, provide transplant website information, encourage others to spread themessage, have more than 50 posts by the creator of the page and more than 50posts by others. However, after a statistical adjustment, researchers foundthat only being white and having more than 50 posts by others were associatedwith success in having donors tested.

那些成功要求供体进行配型检查的患者多数是白人，所患为多囊肾，提供有移植的网站信息，鼓励其他人帮忙发布信息，求助多于50帖。

然而，通过统计学矫正分析，研究者发现只有是白人而且多余50个求助帖的才有希望成功地进行配型检查。

Some of the study's findings raise ethicalconcerns. Three percent of the pages received offers to sell kidneys, mostlyfrom people in Third World countries. Would-bedonors typically asked for $30,000 to $40,000. However, selling organs isillegal.

其他的研究结论引**理担忧。3%的网页接到了出售肾源的信息，绝大部分是来自第三世界。这些捐赠者一般都要价在3万美元到4万美国之间。然而，销售器官是非法的。

Moreover, only 5 percent of pages mentioned therisks of kidney donation, and only 11 percent mentioned associated costs.

更有甚者，仅5%的网页提及肾脏捐赠的风险，仅11%的网页涉及到相关的费用。

"Use of social media could be an effectiveway to solicit kidney donation, but more study is needed to determine how to dothis safely and with enough knowledge to make informed decisions," Changsaid.

张称，应用社会媒体可以有效的求助肾源，但是如何安全、合法的取得肾源仍需要进一步的研究。