Originally published as JCO Early Release 10.1200/JCO.2008.18.5223 on January 21 2009

This Article Full Text Full Text (PDF) Purchase Article View Shopping Cart Alert me when this article is cited Alert me if a correction is posted Services Email this article to a colleague Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Save to my personal folders Download to citation manager Rights & Permissions Citing Articles Citing Articles via HighWire Citing Articles via Google Scholar Google Scholar Articles by Fernandez, C. V. Articles by Kodish, E. Search for Related Content PubMed PubMed Citation Articles by Fernandez, C. V. Articles by Kodish, E. Related Articles Related Editorial Social Bookmarking                            What's this?

Providing Research Results to Participants: Attitudes and Needs of Adolescents and Parents of Children With Cancer

From the IWK Health Centre and Department of Pediatrics and Department of Bioethics, Dalhousie University; Surveillance and Epidemiology Unit, Cancer Care Nova Scotia, Halifax, Nova Scotia; Department of Pediatric Hematology/Oncology, BCs Children's Hospital, Vancouver, British Columbia; Department of Pediatric Hematology/Oncology, Hôpital Sainte-Justine, Montreal, Quebec; Department of Psychology, Ottawa University, Ottawa; Department of Philosophy, University of Western Ontario, London, Ontario, Canada; Winship Cancer Institute, Emory University, Atlanta, GA; Department of Pediatric Hematology/Oncology, St Jude's Research Hospital, Memphis, TN; and the Department of Bioethics, the Cleveland Clinic Foundation, Cleveland, OH.

Corresponding author: Conrad Fernandez, MD, FRCPC, Department of Pediatrics, IWK Health Centre, 5850 University Ave, PO Box 9700, Halifax, Nova Scotia, B3K 6R8, Canada; e-mail: conrad.fernandez{at}iwk.nshealth.ca.

Purpose There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants.

Methods A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against providing results; and barriers to providing results.

Results Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences.

Conclusion Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated.

Supported by an operating grant from the Canadian Institutes of Health Research–Strategic Initiatives Ethics (Grant No. 200309EOG-121657-ELH-IWK-106653). Salary support for J.N.B and R.C.B. provided in part from the National Institutes of Health Cancer Center Support Core Grant No. CA-21765 and the American-Lebanese-Syrian Associated Charities.

Presented in part at the Annual Meeting of the International Society of Pediatric Oncology, October 30-November 3, 2007, Mumbai, India, and at the Joint American Society of Clinical Oncology/Children's Oncology Group Annual Symposium, October 16, 2007, Denver, CO.

A copy of the survey instruments may be obtained by contacting the corresponding author.

Authors' disclosures of potential conflicts of interest and author contributions are found at the end of this article.

CiteULike    Complore    Connotea    Del.icio.us    Digg    Facebook    Reddit    Technorati    Twitter    What's this?

Related Editorial

• Sharing Study Results With Trial Participants: Time for Action
  Ann H. Partridge and Eric P. Winer
  JCO 2009 27: 838-839 [Full Text]

This article has been cited by other articles:

				K. Read, C. V. Fernandez, J. Gao, C. Strahlendorf, A. Moghrabi, R. D. Pentz, R. C. Barfield, J. N. Baker, D. Santor, C. Weijer, et al. Decision-making by Adolescents and Parents of Children With Cancer Regarding Health Research Participation Pediatrics, September 1, 2009; 124(3): 959 - 965. [Abstract] [Full Text] [PDF]

				A. H. Partridge and E. P. Winer Sharing Study Results With Trial Participants: Time for Action J. Clin. Oncol., February 20, 2009; 27(6): 838 - 839. [Full Text] [PDF]