BACKGROUND AND STUDY AIMS

1. Parenting Factors Impact Communication Between Young Adults with Congenital Heart Disease and Their Cardiologists S Liu1, L Burchill2, H Balint2, C Silversides1,2,AH Kovacs1,2 1 Faculty of Medicine, University of Toronto, Toronto, Ontario2 Toronto Congenital Cardiac Centre for Adults, Peter Munk Cardiac Centre, University Health Network, Toronto, Ontario BACKGROUND AND STUDY AIMS RESULTS Patients with congenital heart disease (CHD) encounter evolving medical and social challenges as they transition from pediatric to adult care. One important goal is to empower adolescents with CHD to communicate effectively with their medical team. A corresponding goal is to educate parents regarding the importance of shifting control and ‘letting go’ as they support their children in assuming greater responsibility for managing their cardiac condition. • IMPACT OF DEMOGRAPHIC AND MEDICAL VARIABLES • Neither the global communication rating nor comfort levels in discussing the four specific domains differed as a function of patient age, sex, education level, or defect complexity. • IMPACT OF PARENTING STYLE • Patients who recalled higher levels of parental care reported better global communication (p<0.01) and were more comfortable discussing their diagnosis and treatment plan (p<0.001), lifestyle issues (p<0.001), personal concerns (p<0.01), and birth control/family planning (p<0.01). • Patients who recalled higher levels of parental overprotection reported less comfort discussing personal concerns (p<0.01) and birth control/family planning (p<0.001). • IMPACT OF AGE OF FIRST INDEPENDENT COMMUNICATION • 33% (33/101) of the patients indicated that they had not yet spoken to a cardiologist on their own without their parents in the room. • For 62% (63/101) of the patients, the mean age at which they first spoke to cardiologists on their own was 19 years (i.e. post-transfer). • Neither the global communication rating nor comfort levels in discussing the four specific domains differed as a function of whether or not patients had prior independent communication with their cardiologists nor the age at which this occurred. GLOBAL COMMUNICATION RATING: HOW WOULD YOU DESCRIBE YOUR COMMUNICATION WITH YOUR DOCTOR? • Study Aims: • Describe the patient-doctor communication experiences as perceived by young adults with CHD • Determine whether patient-doctor communication differs as a function of demographic/medical variables, parenting style, and age of first independent medical communication METHODS AND PARTICIPANTS PATIENT-REPORTED COMFORT LEVEL WHEN TALKING WITH THEIR DOCTORS • In this cross-sectional study, patients aged 18-25 were recruited from an adult CHD clinic. Patients completed an anonymous survey that included: • Validated questionnaire of parental care and overprotection • Self-rated global communication experience • Self-related comfort level in discussing four specific domains: • 1) Diagnosis and treatment plan • 2) Lifestyle issues (e.g. exercise, diet, education, career) • 3) Personal concerns (e.g. psychological issues/sexual matters) • 4) Issues re. birth control/family planning CONCLUSIONS Despite overall positive global communication ratings, many young adults with CHD report difficulty expressing themselves and understanding information provided by their doctors. Patient-recalled parental overprotection adversely influenced young adults’ ability to discuss sensitive health issues including personal concerns (psychological and sexual matters) and family planning. Conversely, patient-recalled parental care had a consistently positive effect on young adults’ communication with their doctors. CHD health care providers are encouraged to develop strategies to (1) empower young people with CHD to assume greater responsibility for communicating their health care needs, and (2) help parents provide continued care and support while also ‘letting go’ of the sole/primary responsibility for health care management. Participants COMMUNICATION BEHAVIOURS