Decision-making by adolescents and parents of children with cancer regarding health research participation.
BACKGROUND
Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer.


METHODS
This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research.


RESULTS
Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01).


CONCLUSIONS
AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials.
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Kate
K
IWK Health Centre, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
Fernandez
Conrad Vincent
CV
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; D002648:Child; D002986:Clinical Trials as Topic; D003657:Decision Making; D006801:Humans; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010290:Parents; D010358:Patient Participation; D011795:Surveys and Questionnaires; D055815:Young Adult