AYAs With Advanced Heart Disease Prefer to Be Involved in Care Decisions


Many adolescents and young adults (AYAs) with advanced heart disease prefer to be involved in decisions that have an impact on their medical care, but new survey results show there is a great need for educational communication efforts that involve their caregivers and clinicians.

To ensure that the medical decision-making and communication preferences of adolescents and young adults (AYAs) with advanced heart disease are known, efforts need to be stepped up to make their clinicians and caregivers aware of those preferences, according to new survey results published in JAMA Network Open.

These results show that this complex patient population prefers to have an active role in their medical decision-making, with the study authors highlighting, “AYA decision-making involvement is associated with important outcomes in other chronic illness groups, but little is known about the medical and end-of-life decision-making preferences of AYAs with advanced heart disease.”

Fifty-six patients with a median (IQR) age of 17.8 (15.8-19.0) years and 53 AYA-parent pairs were enrolled in the present study. Sixty-four percent of the patients were male, 24.5% identified as multiracial or as a member of a racial or ethnic minority group, and all had heart failure, were listed for a heart transplant, or were post transplant with life-limiting complications; the most common cardiac diagnoses were post transplant with complications (26.4%), congenital heart disease (CHD) in 1 ventricle (22.6%), and anthracycline cardiomyopathy (20.8%). Eighty-four percent of the parent respondents were female. Patient preferences for communication, decision-making, and advance care planning were measured using MyCHATT and 12 nominally scaled questions from the Lyon Family-Centered Advance Care Planning Survey.

Overall, 45.3% of the AYAs in this study preferred to take an active role in decisions regarding heart disease management, with 41.5% indicating they want to make the decisions while considering their parents’ and physicians’ opinions. An overwhelming 86.8% said they want to discuss treatment risks and adverse effects (AEs) and 90.6%, how their condition affects their daily life.

For end-of-life care decisions, 56.5% stated wanting to be involved in these discussions and 83.0% also wanted their parents involved in these decisions. The most preferred time to have these discussions was when physicians determine a case is likely terminal (30.2%).

A longer time since their cardiac diagnosis (r = 0.32; P = .02) and worse functional status (mean [SD], 4.33 [1.35] in New York Heart Association [NYHA] class III or IV vs 2.8 [1.82] in NYHA class I or II; t value = 2.74; P = .01) were linked to a greater preference by AYAs to be involved in their care decisions.

Few parents (11.8%) wanted to let their AYA make medical decisions on their own; when parents were asked about their preferences, the most common response by 35.3% was for themselves and their child’s care team “to make shared medical decisions on behalf of their AYA.” However, most parents responded in the affirmative when asked if they thought their AYA would want to discuss treatment-related AEs (74.5%), procedural/surgical details (86.3%), impact of their condition on daily activities (96.1%), and their prognosis (72.5%).

Responses were similar when the AYA participants and their parents were asked who should initiate end-of-life care decisions: 86.8% of the AYAs felt this role should fall to their parents and 50.9%, their cardiologist, compared with 78.4% and 62.7%, respectively, among their parents.

“Highlighted as one of the highest priorities for research within pediatric cardiology palliative care–focused science, this is the first study we know of to describe the communication and decision-making preferences of the growing population of AYAs with advanced heart disease,” the study authors wrote. “The vast majority of AYAs with advanced heart disease desire a high level of active engagement in their medical decision-making and prefer to be informed about risks, adverse effects, impact of condition on daily activities, and their prognosis. This is consistent with research conducted among AYAs with cancer.”

Moving forward, the authors concluded, the most important priorities are to address communication gaps stemming from how much parents/caregivers and clinicians think AYAs want to be involved in their heart disease decision-making vs how much of an active role the patients want to take and to target education and training efforts for cardiologists to better their understanding of AYA preferences for heart disease and end-of-life care.


Cousino MK, Miller VA, Smith C, et al. Medical and end-of-life decision-making preferences in adolescents and young adults with advanced heart disease and their parents. JAMA Netw Open. Published online May 5, 2023. doi:10.1001/jamanetworkopen.2023.11957

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