European Journal of Oncology Nursing
Volume 15, Issue 2 , Pages 124-129 , April 2011

Feedback of trial results to participants: A survey of clinicians’ and patients’ attitudes and experiences

References 

  1. Di Blasi Z, Kaptchuk TJ, Weinman J, Kleijnen J. Informing participants of allocation to placebo at trial closure: postal survey. BMJ. 2002;325:1329
  2. Dixon-Woods M, Jackson C, Windridge K, Kenyon S. Receiving a summary of the results of a trial: qualitative study of participants’ views. BMJ. 2006;332(7535):206–210
  3. Fernandez CV, Kodish E, Taweel S, Shurin S, Weijer C. Offering to return results to research participants: attitudes and needs of principal investigators in the Children’s Oncology Group. Journal of Pediatric Hematology/Oncology. 2003;25(9):704–708
  4. Fernandez CV, Santor D, Weijer C, Strahlendorf C, Moghrabi A, Pentz R, et al. The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer. Pediatric Blood Cancer. 2007;48:441–446
  5. Fernandez CV, Gao J, Strahlendorf C, Moghrabi A, Pentz R, Barfield RC, et al. Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer. Clinical Oncology. 2009;27:878–883
  6. Johnson L, Barrett-Lee P, Ellis P, Bliss JM. How do patients want to learn of results of clinical trials? A survey of 1431 breast cancer patients. British Journal of Cancer. 2008;98(1):34–38
  7. Kirschen MP, Jaworska A, Illes J. Subjects’ expectations in neuroimaging research. Journal of Magnetic Resonance and Imaging. 2006;23(2):205–209
  8. MacNeil SD, Fernandez CV. Attitudes of research ethics board chairs towards disclosure of research results to participants: results of a national survey. Journal of Medical Ethics. 2007;33(9):549–553
  9. Mancini J, Genre D, Dalenc F, Ferrero JM, Kerbrat P, Martin AL, et al. Participants’ uptake of clinical trial results: a randomised experiment. British Journal of Cancer. 2010;103(7):1081–1084
  10. Moutel G, Duchange N, Raffi F, Sharara L, Theodorou I, Noel V, et al. Communication of pharmacogenetic research results to HIV-infected treated patients: standpoints of professionals and patients. European Journal of Human Genetics. 2005;13:1055–1062
  11. Newcombe RG. Interval estimation for the difference between independent proportions: comparison of eleven methods. Statistics in Medicine. 1998;17:873–890
  12. Partridge AH, Burstein HJ, Gelman RS, Marcom PK, Winer P. Do patients participating in clinical trials want to know study results?. Journal of Natural Cancer Institute. 2003;95:491–492
  13. Partridge AH, Hackett N, Blood E, Gelman R, Joffe S, Bauer-Wu S, et al. Oncology physician and nurse practices and attitudes regarding offering clinical trial results to study participants. Journal of Natural Cancer Institute. 2004;96:629–632
  14. Partridge AH, Wong JS, Knudsen K, Gelman R, Sampson E, Gadd M, et al. Offering participants results of a clinical trial: sharing results of a negative study. Lancet. 2005;365(9463):963–964
  15. Partridge AH, Wolff AC, Marcom PK, Kaufman PA, Zhang L, Gelman R, et al. The impact of sharing results of a randomised breast cancer clinical trial with study participants. Breast Cancer Research Treatment. 2009;115:123–129
  16. Richards MP, Ponder M, Pharoah P, Everest S, Mackay J. Issues of consent and feedback in a genetic epidemiological study of women with breast cancer. Journal of Medical Ethics. 2003;29(2):93–96
  17. 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. 2005;106(4):1199–1202
  18. Schulz CJ, Riddle MP, Valdimirsdottir HB, Abramson DH, Sklar CA. Impact on survivors of retinoblastoma when informed of study results on risk of second cancers. Medical and Pediatric Oncology. 2003;41(1):36–43
  19. Shalowitz DI, Miller FG. Communicating the results of clinical research to participants: attitudes, practices and future directions. PLoS Med. 2008;5(5):0714–0720
  20. Sood A, Prasad K, Chhatwani L, Shinozaki E, Cha SS, Loehrer LL, et al. Patients’ attitudes and preferences about participation and recruitment strategies in clinical trials. Mayo Clinic Proceedings. 2009;84(3):243–247

 Funded by Cancer Research UK grant no. C1289/A8202.

PII: S1462-3889(10)00101-8

doi: 10.1016/j.ejon.2010.06.009

European Journal of Oncology Nursing
Volume 15, Issue 2 , Pages 124-129 , April 2011