Exceptional Disease Courses After the Use of CAM: Selection, Registration, Medical Assessment, and Research. An International Perspective

Launsø, Laila; Drageset, Brit Johanne; Fønnebø, Vinjar; Jacobson, Judith S.; Haahr, Niels; White, Jeffrey D.; Salamonsen, Anita; Horneber, Markus; Egeland, Else

doi:10.1089/acm.2006.12.607

Cited by 17 publications

(19 citation statements)

References 13 publications

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“…Participants were selected via the Registry of Exceptional Courses of Disease (hereafter 'the Registry'), which includes Scandinavian self-reported positive and negative courses of disease related to the use of CAM [31,32]. In this study, patients with cancer or MS were included because both patient groups are large, and their use of CAM is widespread and considered as potentially risky [12,13,[20][21][22][23][24].…”

Section: Methodsmentioning

confidence: 99%

Mind the Gap! Lay and Medical Perceptions of Risks Associated with the Use of Alternative Treatment and Conventional Medicine

Salamonsen

2015

Complement Med Res

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Background: Studies on the widespread use of complementary and alternative medicine (CAM) demonstrate that CAM users base their treatment decisions on both subjective, experience-based knowledge and medical knowledge. The aim of this study was to explore lay and medical risk perceptions associated with CAM and conventional medicine. Patients and Methods: In this explorative qualitative study, we conducted in-depth interviews with 25 Norwegian CAM users with cancer or multiple sclerosis and 12 doctors. Results: The interviews revealed fundamental differences in risk perceptions influencing treatment decisions and risk communication in a clinical setting. While CAM users considered conventional medicine as potentially risky and related this to experiences of severe adverse effects, CAM was perceived as natural and safe. Doctors' risk perceptions were quite the contrary, mainly because of lack of scientific evidence for CAM as a safe and beneficial treatment option. Conclusion: For the safety of CAM users, such divergent risk perceptions may have far-reaching consequences. CAM users should be taken seriously with their self-perception as decision-makers considering their approaches to experiences, knowledge, and science. An awareness of differing lay and medical risk perceptions associated with CAM and conventional medicine in research, doctor-patient communication, and education of patients and doctors is thus important to optimize patient safety in complex health care systems.

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Section: Methodsmentioning

confidence: 99%

Mind the Gap! Lay and Medical Perceptions of Risks Associated with the Use of Alternative Treatment and Conventional Medicine

Salamonsen

2015

Complement Med Res

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“…The context, foundations and philosophical background of CAM treatments [13,26,28,57,58,71,76,97,99,119,121,[130][131][132] are an important basis through which to understand the differences between CAM practices and conventional medicine. The safety of different CAM treatments needs to be assessed [46,57,58,64,82,89,91,119,133] to protect patients using CAM [46], even though CAM is generally considered safe [55,81].…”

Section: Research Prioritiesmentioning

confidence: 99%

“…Uncontrolled observational studies, however, give little information about effects of treatment [47], and their weak internal validity must be addressed [20]. A particular method that has been discussed is the Best Case Series [29,[90][91][92].…”

Section: Research Prioritiesmentioning

confidence: 99%

Key Issues in Clinical and Epidemiological Research in Complementary and Alternative Medicine – a Systematic Literature Review

Fischer

Junne²,

Witt

et al. 2012

Complement Med Res

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Background: In the last 2 decades there has been a large increase in publications on complementary and alternative medicine (CAM). However, CAM research methodology was heterogeneous and often of low quality. The aim of this systematic review was to investigate scientific publications with regards to general issues, concepts and strategies. We also looked at research priorities and methods employed to evaluate the clinical and epidemiological research of CAM in the past to identify the basis for consensus-based research strategies. Methods: We performed a systematic literature search for papers published between 1990 and 2010 in 7 electronic databases (Medline, Web of Science, PsychArticles, PsycInfo, CINAHL, EMBASE and Cochrane Library) on December 16 and 17, 2010. In addition, experts were asked to nominate relevant papers. Inclusion criteria were publications dealing with research methodology, priorities or complexities in the scientific evaluation of CAM. All references were assessed in a multistage process to identify relevant papers. Results: From the 3,279 references derived from the search and 98 references contributed by CAM experts, 170 papers fulfilled the criteria and were included in the analysis. The following key issues were identified: difficulties in past CAM research (e.g., randomisation, blinding), utility of quantitative and qualitative research methods in CAM, priority setting in CAM research and specific issues regarding various CAM modalities. Conclusions: Most authors vote for the use of commonly accepted research methods to evaluate CAM. There was broad consensus that a mixed methods approach is the most suitable for gathering conclusive knowledge about CAM.

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“…The rare occurrence of remarkable recovery against all odds, totally inexplicable but real, is something that most oncologists have seen in their practice. In the past, other terms have been used to describe the phenomenon: "spontaneous remission," "spontaneous healing," "spontaneous regression," "miracle cures," " remarkable recovery," "resilient cancer survivor," and "exceptional disease course" [2][3][4][5]. For the purpose of this paper, we will use the term "exceptional patient(s).…”

Section: Introductionmentioning

confidence: 99%

“…Certain mechanisms have been suggested, including apoptosis, telomerase inhibition, angiogenesis inhibition, elimination of a carcinogen or antigen, immunological response, effects related to psychosocial factors, nutritional factors, complementary medicine, and others [2,4,5,[10][11][12]. Others have noted that some exceptional patients experienced a spiritual awakening before the remission took place, suggesting that the patients themselves had an important role in the healing process [13,14].…”

Section: Introductionmentioning

confidence: 99%

Activism among exceptional patients with cancer

Frenkel

Ari

Engebretson³

et al. 2010

Support Care Cancer

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Exceptional Disease Courses After the Use of CAM: Selection, Registration, Medical Assessment, and Research. An International Perspective

Cited by 17 publications

References 13 publications

Mind the Gap! Lay and Medical Perceptions of Risks Associated with the Use of Alternative Treatment and Conventional Medicine

Mind the Gap! Lay and Medical Perceptions of Risks Associated with the Use of Alternative Treatment and Conventional Medicine

Key Issues in Clinical and Epidemiological Research in Complementary and Alternative Medicine – a Systematic Literature Review

Activism among exceptional patients with cancer

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