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

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.

Survey.

Participants were 82 adolescents seen at one of four paediatric chronic illness subspecialty clinics and 62 of their parents.

Predictor variables include sociodemographics, health parameters, risk behaviour, and physical and cognitive development. The main outcome variable is preferences for decision-making style.

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.