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.
Subject(s)
Adolescent Behavior/psychology , Chronic Disease/psychology , Decision Making , Disabled Children/psychology , Parent-Child Relations , Parents/psychology , Patient Participation/statistics & numerical data , Adolescent , Age Factors , Anemia, Sickle Cell/therapy , Arthritis, Juvenile/therapy , Chronic Disease/classification , Chronic Disease/therapy , Cohort Studies , Cystic Fibrosis/therapy , Female , Hospitals, Pediatric , Humans , Inflammatory Bowel Diseases/therapy , Male , Midwestern United States , Multivariate Analysis , Patient Participation/psychology , Patient Satisfaction/statistics & numerical data , Pilot Projects , Risk-TakingABSTRACT
PURPOSE: Doctors must understand patients' priorities to create an effective treatment partnership. Little is known about whether subspecialist pediatricians understand chronically ill adolescents' preferences. METHODS: A survey was conducted of 155 adolescents with chronic illnesses and 52 subspecialty physicians recruited from the same clinics of a children's hospital. Adolescents and physicians rated the importance that adolescents place on items relating to quality of care and physician-patient communication styles using a previously validated measure. RESULTS: For quality of care items, rank order correlation between physicians and patient responses was high (r = .63, p < .001) and both rated pain management items as most important. Physicians underestimated the importance adolescents placed on communicating with the physician as a friend and medical-technical aspects of care. For communication items, physicians' responses were significantly different than adolescents for 13 of 17 items. Except for three items pertaining to autonomy, physician and patient responses were in the same direction, but adolescent responses were less extreme. CONCLUSIONS: Physicians understood the importance of pain management to adolescents with chronic illnesses, but overestimated their desired level of autonomy. Asking adolescents for their preferences may be the first step in improving adolescents' experience of care.
