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Piloting a parent and patient decision aid to support clinical trial decision making in childhood cancer
Author(s) -
Robertson Eden G.,
Wakefield Claire E.,
Cohn Richard J.,
Battisti Robert A.,
Donoghoe Mark W.,
Ziegler David S.,
Fardell Joanna E.,
Mitchell Richard,
O'Brien Tracey A.
Publication year - 2019
Publication title -
psycho‐oncology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.41
H-Index - 137
eISSN - 1099-1611
pISSN - 1057-9249
DOI - 10.1002/pon.5109
Subject(s) - medicine , clinical trial , childhood cancer , family medicine , cancer , pediatrics
Abstract Objective Families of a child with cancer can find the decision to enrol in a clinical trial challenging and often misunderstand key concepts that underpin trials. We pilot tested “Delta,” an online and booklet decision aid for parents with a child with cancer, and adolescents with cancer, deciding whether or not to enrol in a clinical trial. Methods We developed Delta in accordance with the International Patient Decision Aid Standards. We conducted a pre‐post pilot with parents with a child, and adolescents, who had enrolled in a paediatric phase III clinical trial for newly diagnosed acute lymphoblastic leukaemia. Parents (n = 37) and adolescents (n = 3) completed a questionnaire before and after using Delta (either the website or booklet, based on their preference). Results Twenty‐three parents (62.2%) and three adolescents (100%) reviewed the Delta website. Parents rated Delta as highly acceptable in regard to being clearly presented, informative, easy to read, useful, visually appealing, and easy to use. All participants reported that they would recommend Delta to others and that it would have been useful when making their decision. Parents' subjective (M diff= 10.8, SD diff = 15.69, P < .001) and objective (OR = 2.25, 95% CI, 1.66‐3.04; P < .001) clinical trial knowledge increased significantly after reviewing Delta. Conclusions To our knowledge, Delta is the first reported decision aid, available online and as a booklet, for parents and adolescents deciding whether or not to enrol in a paediatric oncology clinical trial. Our study suggests that Delta is acceptable, feasible, and potentially useful.