Exceptional disease courses after the use of CAM: selection, registration, medical assessment, and research. an international perspective.
OBJECTIVE
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).


METHODS
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.


RESULTS
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.


CONCLUSIONS
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.
Launsø
Laila
L
The National Research Center in Alternative and Complementary Medicine (NAFKAM), University of Tromsø, Tromsø, Norway.
Drageset
Brit J
BJ
Fønnebø
Vinjar
V
Jacobson
Judith S
JS
Haahr
Niels
N
White
Jeffrey D
JD
Salamonsen
Anita
A
Horneber
Markus
M
Egeland
Else
E
D000529:Complementary Therapies / Q000458:organization & administration*; D019317:Evidence-Based Medicine / Q000458:organization & administration*; D014943:Global Health; D006801:Humans; D007391:International Cooperation; D008499:Medical Records; D017063:Outcome Assessment, Health Care; D012107:Research Design; D016896:Treatment Outcome