Providing research results to participants: attitudes and needs of adolescents and parents of children with cancer.
OBJECTIVE
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.


CONCLUSIONS
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.
Fernandez
Conrad Vincent
CV
Department of Pediatrics, IWK Health Centre, Dalhousie University, 5850 University Ave, PO Box 9700, Halifax, Nova Scotia, B3K 6R8, Canada. conrad.fernandez@iwk.nshealth.ca
Gao
Jun
J
Strahlendorf
Caron
C
Moghrabi
Albert
A
Pentz
Rebecca Davis
RD
Barfield
Raymond Carlton
RC
Baker
Justin Nathaniel
JN
Santor
Darcy
D
Weijer
Charles
C
Kodish
Eric
E
D000293:Adolescent; D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D002170:Canada; D030881:Disclosure / Q000941:ethics*; D026690:Ethics, Clinical; D032984:Ethics, Research; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology; D010290:Parents / Q000523:psychology; D028701:Patient Rights / Q000941:ethics*; D010361:Patients / Q000523:psychology; D010817:Physician-Patient Relations; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult