Younger patients with advanced heart disease favor active roles in medical decision-making
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Key takeaways:
- Survey data show most teens and young adults with advanced heart disease prefer patient-led active medical decision-making.
- Caregivers must ensure they meet the communication preferences of young patients.
Most teens and young adults with advanced heart disease prefer patient-led, active decision-making to discuss treatment risks, prognosis and end-of-life care, whereas caregivers prefer parent/physician shared decision-making, data show.
“Both health care clinicians and parents are likely underestimating the degree to which teens and young adults with serious illnesses, such as advanced heart disease, desire to be informed of and involved in their medical decision-making,” Melissa Cousino, PhD, associate professor of pediatrics and cardiac surgery, and director of the M-COPE Psychosocial Services and Research Program, Congenital Heart Center at the University of Michigan, told Healio. “There is not a one-size-fits-all approach to health care communication and shared decision-making with youth and their families.”
In a cross-sectional study, Cousino and colleagues analyzed data from 56 adolescents or young adults aged 12 to 24 years with HF who were listed for heart transplant or were posttransplant with life-limiting complications, along with a parent or caregiver. Participants completed an electronic survey between July 2018 and April 2021 at a single-center HF/transplant service at a U.S. children’s hospital. The median age of participants was 18 years; 64.2% were male and 75.5% were white. Decision-making preferences for each survey item were categorized as passive (deferred to physician or parent), shared (together with physician or parent) or active (patient-led decision-making). Researchers used the MyCHATT tool to describe adolescent or young adult communication and decision-making preferences regarding specific topics such as adverse effects, discussing procedural/surgical details, and prognosis, as well as 12 questions from the Lyon Family-Centered Advance Care Planning Survey to assess participants’ preferences for involvement in advance care planning and end-of-life decision-making.
The findings were published in JAMA Network Open.
Researchers found that 45.3% of adolescent and young adult respondents indicated a preference for active, patient-led decision-making specific to heart disease management; however, the greatest proportion of parent respondents, 35.3%, preferred they and physicians make shared medical decisions on behalf of their adolescent or young adult, representing a parent-child decision-making discordance (X2 = 11.7; P = .01).
Most adolescent and young adult participants stated a preference to discuss adverse effects or risks of treatment (86.8%), procedural and/or surgical details (84.9%), the impact of condition on daily activities (90.6%) and their prognosis (79.2%).
More than half of the adolescent or young adult respondents preferred to be involved in end-of-life decisions if very ill (56.6%).
Researchers found that longer time since cardiac diagnosis (r = 0.32; P = .02) and worse functional status (P = .01) were associated with a preference for more active, patient-led decision-making.
“We need to ask teens and young adults what their preferences are specific to communication and decision-making related to their serious illness from the start,” Cousino told Healio. “Some may prefer to hear and know very little. Others, including younger children, may want to be fully included, even on issues related to prognosis or end-of-life care.
“We must move forward with the development and testing of interventions focused on ensuring the communication and decision-making needs and preferences of children, teens and young adults themselves are met,” Cousino told Healio. “How we communicate with our young patients and involve them in their care impacts many other important facets, such as their emotional health, treatment adherence and more.”
For more information:
Melissa Cousino, PhD, can be reached at melcousi@med.umich.edu; Twitter: @melissacousino.
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