title: The return of research results to participants: pilot questionnaire of adolescents and parents of children with cancer.
abstract: OBJECTIVE
  The offer to return research results to participants is increasingly recognized as an ethical obligation, although few researchers routinely return results. We examined the needs and attitudes of parents of children with cancer and of adolescents with cancer to the return of research results.
  
  
  METHODS
  Seven experts in research ethics scored content validity on parent and adolescent questionnaires previously developed through focus group and phone interviews. The questionnaires were revised and provided to 30 parents and 10 adolescents in a tertiary care oncology setting.
  
  
  RESULTS
  The content validity index for individual questions and the overall questionnaires scored as 0.86 for both questionnaires. All 30 parents and 10 adolescents who agreed to participate returned questionnaires. The majority (>95%) indicated that they had a strong or very strong right to receive results. Letter or e-mail was a satisfactory means to return results described as good or neutral (66% parents, 100% adolescents) but more participants wished face-to-face disclosure of results with negative implications (50% parents, 60% adolescents). Very few wanted results disseminated through a Web site. The majority acknowledged the need for peer-review before disclosure (60% of adolescents and parents) but did not want "to be the last to know."
  
  
  CONCLUSIONS
  Our data suggest that pediatric oncology patients and parents of children with cancer strongly feel that they have a right to research results, and that they wish to receive these in a timely manner.
authors.affiliation: Department of Pediatrics, IWK Health Centre, Halifax, Nova Scotia, Canada. conrad.fernandez@iwk.nshealth.ca
authors.forename: C V
authors.initials: CV
authors.lastname: Fernandez
authors.forename: D
authors.initials: D
authors.lastname: Santor
authors.forename: C
authors.initials: C
authors.lastname: Weijer
authors.forename: C
authors.initials: C
authors.lastname: Strahlendorf
authors.forename: A
authors.initials: A
authors.lastname: Moghrabi
authors.forename: R
authors.initials: R
authors.lastname: Pentz
authors.forename: J
authors.initials: J
authors.lastname: Gao
authors.forename: E
authors.initials: E
authors.lastname: Kodish
mesh_terms: D000293:Adolescent; D000328:Adult; D000339:Affect; D002648:Child; D002986:Clinical Trials as Topic; D006801:Humans; D020407:Internet; D009369:Neoplasms / Q000523:psychology; D010290:Parents / Q000523:psychology; D033283:Patient Access to Records / Q000941:ethics / Q000592:standards / Q000639:trends; D028701:Patient Rights; D017060:Patient Satisfaction / Q000706:statistics & numerical data; D010361:Patients / Q000523:psychology; D010380:Peer Review; D010865:Pilot Projects; D035842:Research Subjects / Q000523:psychology*; D012494:Sampling Studies; D013315:Stress, Psychological / Q000209:etiology / Q000523:psychology; D011795:Surveys and Questionnaires; D013997:Time Factors; D016896:Treatment Outcome; D014342:Truth Disclosure / Q000941:ethics