CAM and Pediatric Oncology: Where Are All the Best Cases?

Table 2

Best case programs—oncology cases.

Program/patient location/-scope/age/time frame	Primary goal	How best cases are submitted/obtained	How best cases are evaluated	Criteria of a best case	Program strengths
Studies
Care, Edmonton; North America; pediatric; 2007/2008	To identify and prioritize CAM therapies that deserve further evaluation and promote partnerships that can successfully enable this goal.	Step I; Active: email to directors of all North American COG sites; (i) by oncologists.; Step II; Active: advertised via CAM research networks; (ii) by CAM providers.; Step III; Active: advertised via CAM networks, associations, and training institutes; (iii) by CAM providers	Step I; Qualitative, descriptive summaries.; Step II; Study coordinators, review the number and nature of reports, and compare to phase I.; Step III; Study coordinators, review number and nature of reports, and compare to steps I and II.	Best Case to include: tumor regression, prolonged survival, and markedly improved quality of life.	Active solicitation; broad definition of best case; inclusion of multiple reporting/ID systems.
NCCAM, NIH,; Bethesda; 2 clinics-Freeport, Bahamas (immunoaugmentation therapy (IAT), and New York, NY (naltrexone); age NR; 2001 [14]	Study used to determine if sufficient evidence is present to recommend further study.	Active: visit to sites; (i) by CAM providers.	Patient records were obtained after receiving consents; patients were interviewed by telephone and screened based on the set criteria.	As for NCI; (i) Documentation of diagnosis.; (ii) Evaluation of proper antitumor endpoint.; (iii) Absence of concurrent treatments.	Active solicitation.
Ulrik Dige, Denmark; Denmark; ages NR; dates NR [15]	Study conducted to explore exceptional cancer patients for further knowledge about CAM.	Active: media coverage; (i) by patients.	As analysis of the cases;Dige conducted qualitative interviews and a thorough evaluation of medical hospital records.	Well documented improvement or total remission without conventional treatment.	Active solicitation.
Johanna Hök: Stockholm, Sweden; Sweden; all ages; 2004-2005; [16]	Aim of the thesis to explore perspectives on CAM use among individuals with cancer in connection to reported exceptional sickness trajectories.	Active: media coverage; (i) by patients.	Patient interviews conducted along with evaluation of CAM reports using manifest content analysis and principal component analysis.	Cases were framed exceptional by the individuals reporting the case.	Active solicitation; broad definition of best case.
Programs
National Cancer Institute (NCI), Bethesda; United States; all ages; 1991–current; [10, 11]	To identify CAM approaches for cancer which warrant NCI-initiated prospective research.	Passive: (i) by CAM provider.	Relevant medical records documents, pathologic slides, and medical imaging studies reviewed by a Best-Case Series Review Team (1-2 physicians and 1-2 oncology nurses).	(i) Definitive diagnosis.; (ii) Documented disease response.; (iii) Absence of confounders.; (iv) Documented treatment history.	Expert review of cases.
NAFKAM, Norway; Scandinavia; all ages; up to 2002–08/2010; [10, 17]	To develop a registry to facilitate research on patients who have exceptional disease courses/best and worse cases.	Passive: (i) by patient or by CAM provider.	Reviewed by NAFKAM’s medical doctor to classify and assess case history.	(i) Experience of unusual treatment results after the use of CAM.; (ii) Confirmed diagnosis before starting CAM treatments.	Broad definition of best case.
UCMO, Germany; Klinikum Nuernberg; ages NR; 1989–current [10, 18]	To decide whether purported tumor-specific efficacy of a CAM warrants further investigation.	Active: contact of CAM provided by UCMO.	Reviewed by coordinating M.D. and; internal team of oncologists, radiologists, and pathologists.	As for NCI.	Active solicitation.
Hufeland Klinik Study, Germany; Hufeland Klinik, Bad Mergentheim, Germany; all ages; 1998/1999; [19]	Patients evaluated to help identify treatments that warranted further study.	Active: (i) by head practitioner selected cases for review.	Reviewers eliminated cases that did not fulfill best case criteria based on their summaries.	(i) Well documented diagnosis.; (ii) Evidence of cancer when starting CAM.; (iii) Unconventional treatment received according to CAM practitioner’s regime.; (iv) Absence of concurrent therapies.	Active solicitation.