Views of treatment decision making from adolescents with chronic illnesses and their parents: a pilot study

OBJECTIVE: Shared decision making may increase satisfaction with health care and improve outcomes, but little is known about adolescents' decision-making preferences. The primary purpose of this study is to describe the decision-making preferences of adolescents with chronic illnesses and their parents, and the extent to which they agree. DESIGN: Survey. SETTING AND PARTICIPANTS: Participants were 82 adolescents seen at one of four paediatric chronic illness subspecialty clinics and 62 of their parents. MAIN VARIABLES: Predictor variables include sociodemographics, health parameters, risk behaviour, and physical and cognitive development. The main outcome variable is preferences for decision-making style. RESULTS AND CONCLUSIONS: When collapsed into three response categories, nearly equal percentages of adolescents (37%) and parents (36%) preferred shared decision making. Overall, the largest proportion of adolescents (46%) and parents (53%) preferred passive decision making compared to active or shared decision making. Across five response choices, 33% of pairs agreed. Agreement was slight and not significant. Improved general health perceptions (OR=0.76, 95% CI=0.59-0.99) and improved behaviour (OR=0.75, 95% CI=0.56-0.99) were significantly associated with parents' preferences for less active decision making. Older age was significantly associated with agreement (OR 1.58, 95% CI=1.09-2.30) between parents and adolescents. The paucity of significant predictor variables may indicate physicians need to inquire directly about patient and parent preferences.