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

Health Expect. 2008 Dec;11(4):343-54. doi: 10.1111/j.1369-7625.2008.00508.x.

Abstract

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.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adolescent Behavior / psychology*
  • Age Factors
  • Anemia, Sickle Cell / therapy
  • Arthritis, Juvenile / therapy
  • Chronic Disease / classification
  • Chronic Disease / psychology*
  • Chronic Disease / therapy
  • Cohort Studies
  • Cystic Fibrosis / therapy
  • Decision Making*
  • Disabled Children / psychology*
  • Female
  • Hospitals, Pediatric
  • Humans
  • Inflammatory Bowel Diseases / therapy
  • Male
  • Midwestern United States
  • Multivariate Analysis
  • Parent-Child Relations*
  • Parents / psychology*
  • Patient Participation / psychology
  • Patient Participation / statistics & numerical data*
  • Patient Satisfaction / statistics & numerical data
  • Pilot Projects
  • Risk-Taking