Adult Congenital Heart Disease: Assessing Barriers to Care in Saskatchewan

Background: The majority of patients born with congenital heart disease (CHD) now live to adulthood due to advanced surgical techniques and pediatric cardiology expertise. Facilitating successful transition to adult care has been deemed a priority. Sufficient capacity of adult CHD providers to handle the increased number of patients, improved communication between pediatric providers and their patients regarding transition, and health care autonomy have been identified as a predictors of successful transition. Methods: This project assessed transition success and adherence to follow-up recommendations among ACHD patients in Saskatchewan, Canada. We contacted young adult patients with CHD who were deemed to require lifelong cardiac care and should have transitioned to adult care between 2007 and 2014. We completed a telephone survey to assess demographics, socioeconomic factors, and care preferences. Results: Of the 106 patients contacted, 32 consented to participate in the telephone survey portion of the study (30% response rate). Nineteen of the respondents (59%) were male with an average age of 22 +/- 2 years. All but one of the participants, who immigrated from the Phillipines at age 14, were born in Canada and their first language was English. Twenty-two respondents (69%) had CHD of moderate to severe complexity (n=22, 69%) while the remainder (n=10, 31%) had simple CHD. Knowledge of congenital heart disease was low with only 63% of participants able to describe their congenital heart condition. Only 69% were receiving guideline-based follow-up for their ACHD although almost all (91%) were being followed by a cardiologist. Seventy-five per cent of participants (n=24) received a low overall score on the Krantz Health Opinion Survey (6 or less), indicating a lack of health care autonomy. Conclusions: Young adults in Saskatchewan have poor knowledge of their underlying congenital heart disease. They are not receiving guideline-based care for their ACHD. ACHD patients also express passive preferences toward receiving information about their health and decision-making. Further research should focus on behavioural interventions to improve self-care practices, while investigating and acknowledging the psychological effects of chronic illness on young adults