Providing research results to participants: Attitudes and needs of adolescents and parents of children with cancer

Journal of Clinical Oncology

Volumn 27, Issue 6, 2009, Pages 878-883

  Fernandez, Conrad Vincent ^a,b   Gao, Jun ^c   Strahlendorf, Caron ^c   Moghrabi, Albert ^c   Pentz, Rebecca Davis ^c   Barfield, Raymond Carlton ^c   Baker, Justin Nathaniel ^c   Santor, Darcy ^c   Weijer, Charles ^c   Kodish, Eric ^c  

^a DALHOUSIE UNIVERSITY   (Canada)

^b IWK HEALTH CENTRE   (Canada)

^c NONE

Author keywords

[No Author keywords available]

Indexed keywords

ACUTE GRANULOCYTIC LEUKEMIA; ACUTE LYMPHOBLASTIC LEUKEMIA; ADOLESCENT; ADULT; AGED; ARTICLE; ATTITUDE; ATTITUDE TO HEALTH; AWARENESS; BRAIN TUMOR; CANADA; CHILD; E-MAIL; EWING SARCOMA; FEMALE; HEALTH SURVEY; HODGKIN DISEASE; HUMAN; INTERPERSONAL COMMUNICATION; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION; NEPHROBLASTOMA; NEUROBLASTOMA; NONHODGKIN LYMPHOMA; OSTEOSARCOMA; PARENT; PRIORITY JOURNAL; QUALITY OF LIFE; RETINOBLASTOMA; RHABDOMYOSARCOMA; SCHOOL CHILD; UNITED STATES;

ADOLESCENT; ADULT; AGED; ATTITUDE OF HEALTH PERSONNEL; ATTITUDE TO HEALTH; CANADA; DISCLOSURE; ETHICS, CLINICAL; ETHICS, RESEARCH; FEMALE; HEALTH SERVICES NEEDS AND DEMAND; HUMANS; MALE; MIDDLE AGED; NEOPLASMS; PARENTS; PATIENT RIGHTS; PATIENTS; PHYSICIAN-PATIENT RELATIONS; QUESTIONNAIRES; UNITED STATES; YOUNG ADULT;

EID: 60849120468     PISSN: 0732183X     EISSN: None     Source Type: Journal    
DOI: 10.1200/JCO.2008.18.5223     Document Type: Article

References (34)

1. Fernandez CV: The return of research results to participants: An ongoing debate modeled in cancer research. Harvard Health Policy Rev 8:16-28, 2007
2. Fernandez CV, Kodish E, Weijer C: Informing study participants of research results: An ethical imperative. IRB 25:12-19, 2003
3. Partridge AH, Winer EP: Informing clinical trial participants about study results. JAMA 288:363-365, 2002
4. Knoppers BM, Joly Y, Simard J, et al: The emergence of an ethical duty to disclose genetic research results: International perspectives. Eur J Hum Genet 14:1170-1178, 2006
5. Shalowitz DI, Miller FG: Disclosing individual results of clinical research: Implications of respect for participants. JAMA 294:737-740, 2005
6. Fernandez CV, Skedgel C, Weijer C: Considerations and costs of disclosing study findings to research participants. CMAJ 170:1417-1419, 2004
7. Schulz CJ, Riddle MP, Valdimirsdottir HB, et al: Impact on survivors of retinoblastoma when informed of study results on risk of second cancers. Med Pediatr Oncol 41:36-43, 2003
8. Markman M: Providing research participants with findings from completed cancer-related clinical trials: Not quite as simple as it sounds. Cancer 106:1421-1424, 2006
9. Ravitsky V, Wilfond BS: Disclosing individual genetic results to research participants. Am J Bioeth 6:8-17, 2006
10. Fernandez CV, Kodish E, Shurin S, et al: Offering to return results to research participants: Attitudes and needs of principal investigators in the Children's Oncology Group. J Pediatr Hematol Oncol 25:704-708, 2003
11. Ormondroyd E, Moynihan C, Watson M, et al: Disclosure of genetics research results after the death of the patient participant: A qualitative study of the impact on relatives. J Genet Couns 16:527-538, 2007
12. Snowdon C, Garcia J, Elbourne D: Reactions of participants to the results of a randomised controlled trial: Exploratory study. BMJ 317:21-26, 1998
13. Partridge AH, Burstein HJ, Gelman RS, et al: Do patients participating in clinical trials want to know study results? J Natl Cancer Inst 95:491492, 2003
14. Partridge AH, Wong JS, Knudsen K, et al: Offering participants results of a clinical trial: Sharing results of a negative study. Lancet 365:963-964, 2005
15. Dixon-Woods M, Jackson C, Windridge KC, et al: Receiving a summary of the results of a trial: Qualitative study of participants' views. BMJ 332:206-210, 2006
16. Macneil SD, Fernandez CV: Informing research participants of research results: Analysis of Canadian university based research ethics board policies. J Med Ethics 32:49-54, 2006
17. Kozanczyn C, Collins K, Fernandez CV: Offering results to research subjects: U.S. Institutional Review Board policy. Account Res 14:255-267, 2007
18. Rigby H, Fernandez CV: Providing research results to study participants: Support versus practice of researchers presenting at the American Society of Hematology annual meeting. Blood 106: 1199-1202, 2005
19. Di Blasi Z, Kaptchuk TJ, Weinman J, et al: Informing participants of allocation to placebo at trial closure: Postal survey. BMJ 325:1329, 2002
20. Partridge AH, Hackett N, Blood E, et al: Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants. J Natl Cancer Inst 96:629-632, 2004
21. Fernandez CV, Santor D, Weijer C, et al: The return of research results to participants: Pilot questionnaire of adolescents and parents of children with cancer. Pediatr Blood Cancer 48:441-446, 2007
22. Dillman D: Mail and Internet Surveys: The Tailored Design Method. (2nd ed). New York, NY, John Wiley & Sons, 2000
23. Fernandez CV, Taweel S, Kodish ED, et al: Disclosure of research result to research participants: Needs and attitudes of adolescents and parents. Pediatr Child Health 10:332-334, 2005
24. Watson D, Clark LA, Tellegen A: Development and validation of brief measures of positive and negative affect: The PANAS scales. J Pers Soc Psychol 54:1063-1070, 1988
25. Laurent J, Catanzaro SJ, Joiner TE, et al: A measure of positive and negative affect for children: Scale development and preliminary validation. Psychol Assess 11:326-338, 1999
26. Bunin GR, Kazak AE, Mitelman O: Informing subjects of epidemiologic study results: Children's Cancer Group. Pediatrics 97:486-491, 1996
27. Bookman EB, Langehorne AA, Eckfeldt JH, et al: Reporting genetic results in research studies: Summary and recommendations of an NHLBI working group. Am J Med Genet A 140:1033-1040, 2006
28. Buchwald H, Fitch LL, Matts JP, et al: Perception of quality of life before and after disclosure of trial results: A report from the Program on the Surgical Control of the Hyperlipidemias (POSCH). Control Clin Trials 14:500-510, 1993
29. Meltzer LA: Undesirable implications of disclosing individual genetic results to research participants. Am J Bioeth 6:28-30, 2006
30. Klitzman R: Questions, complexities, and limitations in disclosing individual genetic results. Am J Bioeth 6:34-36, 2006
31. Boal WL, Friedland J, Schulte PA: Workers' response to risk notification. Am J Ind Med 27:471-483, 1995
32. Dressler LG, Juengst ET: Thresholds and boundaries in the disclosure of individual genetic research results. Am J Bioeth 6:18-20, 2006
33. Baker L, Wagner TH, Singer S, et al: Use of the Internet and e-mail for health care information: Results from a national survey. JAMA 289:2400-2406, 2003
34. Shalowitz DI, Miller FG: Communicating the results of clinical research to participants: Attitudes, practices, and future directions. PLoS Med 5:e91, 2008