Launsø Laila, Drageset Brit J, Fønnebø Vinjar, Jacobson Judith S, Haahr Niels, White Jeffrey D, Salamonsen Anita, Horneber Markus, Egeland Else
The National Research Center in Alternative and Complementary Medicine (NAFKAM), University of Tromsø, Tromsø, Norway.
J Altern Complement Med. 2006 Sep;12(7):607-13. doi: 10.1089/acm.2006.12.607.
To describe the different approaches that investigators in several countries have used to obtain, register, assess, and research exceptional case histories after the use of complementary and alternative medicine (CAM).
Searches have been carried out currently in the databases PubMed and MEDLINE((R)) using the keywords: exceptional disease course/best and worst cases/best-case series + use of CAM. We have only found a few papers limited to best-case series and cancer. Furthermore, we have used the "snowball method" by contacting researchers in different countries starting with with the National Cancer Institute in the United States in order to get information about ongoing approaches to obtain, register, assess, and research exceptional case histories after the use of CAM.
There appears to be a gap between "evidence-based" knowledge drawn from randomized controlled trials, systematic reviews, and meta-analyses and experience-based knowledge of treatment outcomes reported by patients and CAM providers. Several research groups in different countries have initiated studies on patients experiencing exceptional treatment outcomes after the use of CAM. Four different approaches to collecting and assessing such case histories have been identified. Three of the approaches collect histories from the treatment providers, whereas the fourth recruits case histories mainly from patients themselves. The medical assessments are generally similar, and seek to document whether the course of disease is different than would have been expected in a conventional treatment situation.
Given differences in the current procedures, the establishment of an international formal collaboration for the recruitment, assessment, and study of exceptional patients is likely to take time. Comparative studies may, however, generate new knowledge about exceptional disease courses across disease categories, cultural contexts, and national boundaries. Our recommendations are that therapeutic approaches that show promising results should warrant prospective study and randomized clinical trials. In addition we recommend that there be (1) agreement on the definition of an exceptional patient, (2) agreement on the interpretation of treatment results, (3) agreement on content requirements of medical records, (4) more consideration of worst cases, (5) more international exchange of experience with registration procedures, and (6) more international exchange of experience with medical assessment procedures.
描述几个国家的研究人员在使用补充和替代医学（CAM）后获取、登记、评估和研究特殊病例史所采用的不同方法。
目前在PubMed和MEDLINE((R))数据库中进行检索，使用关键词：特殊病程/最佳和最差病例/最佳病例系列+CAM的使用。我们仅找到几篇局限于最佳病例系列和癌症的论文。此外，我们采用了“滚雪球法”，从美国国立癌症研究所开始联系不同国家的研究人员，以获取有关使用CAM后获取、登记、评估和研究特殊病例史的现行方法的信息。
从随机对照试验、系统评价和荟萃分析得出的“循证”知识与患者和CAM提供者报告的基于经验的治疗结果知识之间似乎存在差距。不同国家的几个研究小组已启动对使用CAM后经历特殊治疗结果的患者的研究。已确定四种收集和评估此类病例史的不同方法。其中三种方法从治疗提供者处收集病史，而第四种主要从患者自身招募病例史。医学评估通常相似，旨在记录疾病进程是否与传统治疗情况下预期的不同。
鉴于当前程序存在差异，建立一个用于招募、评估和研究特殊患者的国际正式合作可能需要时间。然而，比较研究可能会产生有关跨疾病类别、文化背景和国界的特殊病程的新知识。我们的建议是，显示出有前景结果的治疗方法应进行前瞻性研究和随机临床试验。此外，我们建议：（1）就特殊患者的定义达成一致；（2）就治疗结果的解释达成一致；（3）就病历的内容要求达成一致；（4）更多地考虑最差病例；（5）更多地进行登记程序的国际经验交流；（6）更多地进行医学评估程序的国际经验交流。
