The importance of involving adolescents and young adults in medical decision making for advanced heart disease has been highlighted by a new study published in the journal ‘JAMA Network Open.’ The study, led by Melissa Cousino, Ph.D., director of the U-M Congenital Heart Center Psychosocial and Educational Program (M-COPE) at the University of Michigan Health C.S. Mott Children’s Hospital, surveyed 53 young adults with advanced heart disease aged 12-24, along with their parents. It found that the majority of teens and young adults wanted to be actively involved in their medical decision-making and were keen to discuss risks and adverse effects of treatments and surgery, quality of life, and life expectancy. However, there was a difference in preferences between young patients and their parents, highlighting the need for personalized communication methods tailored to each young patient regardless of their diagnosis. The study has important implications for clinicians caring for children and young adults with significant heart disease and reinforces the need for individualized conversation tools and decision-making interventions.
