Young Heart Patients Actively Take Part in Medical Care Decisions

Adolescents and young adults preferred more patient-led active decision-making while parents preferred more parent/physician-shared decision-making.

Many young people with advanced heart disease wanted to be actively involved in medical decisions affecting them, suggests a new study published in JAMA Network Open. But there was a notable gap between the preferences of young patients and their parents.

Adolescents and young adults with advanced heart disease are at high risk of dying in the hospital, often require invasive treatment, and experience significant symptoms that impact their quality of life.

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‘New study findings suggest interventions to better meet the decision-making needs of adolescents and young adults with advanced heart disease are warranted.’

In such a scenario, it is critical that a better understanding of the communication and medical decision-making preferences of the young people we care for is given. How we communicate about diagnosis, prognosis, treatment options, and more impacts coping, medical adherence, and health outcomes ().

Hence, researchers wanted to characterize the decision-making preferences of young adults with advanced heart disease and their parents and determine factors associated with these preferences.

They surveyed 53 young adults ages 12-24 with advanced heart diseases, including heart failure – a lifelong condition in which the heart muscle cannot pump enough blood to meet the body’s needs – along with 51 of their parents.

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In this sample of patients with serious heart disease, they found that many teens and young adults want to be aware of their treatment options, risks, and prognosis information and desire active involvement in their medical decision-making.

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Nearly 45 % of patients desired active, patient-led decision-making specific to their heart disease management with a considerable majority wanting to discuss adverse effects or risks of treatment, surgical details, quality of life, and life expectancy.

Meanwhile, parents and guardians preferred an approach involving shared decision-making between them and their child’s doctors. The largest proportion of parents felt they should make medical decisions for their teen or young adult in partnership with the medical team.

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Parents as well as clinicians, are trying to protect young people from the bad, sad, or difficult news. Yet, a large number of young people want to engage in their healthcare, even when information is related to death or dying, which can be more isolating and anxiety-provoking.

There is no one-size-fits-all approach to medical communication and decision-making. Each child, teen, young adult, and family system has different needs and preferences. It is on us to better understand youth needs and preferences to best incorporate their voice into medical care decisions in a way that is aligned with their needs ().

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Ultimately, this will inform the development of interventions to support parents and healthcare clinicians working with young people facing serious illnesses and arduous medical courses.

The study should get the attention of all clinicians who care for children with significant heart disease. Both parents and providers may be underestimating how actively involved adolescents and young adults want to be when it comes to decisions about their heart disease.

These findings underscore the importance of understanding everyone’s preferences and personalizing communication methods with each young patient regardless of their diagnosis, disease severity, or symptoms ().

Researchers need to continue to pursue individualized conversation tools and decision-making interventions with young patients with advanced heart disease.

References:

Cancer-Related Decision-Making Among Adolescents, Young Adults, Caregivers, and Oncology Providers - (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9198895/)
Exploration of Decisional Control Preferences in Adolescents and Young Adults with Cancer and Other Complex Medical Conditions - (https://www.researchgate.net/publication/339468204_Exploration_of_Decisional_Control_Preferences_in_Adolescents_and_Young_Adults_with_Cancer_and_Other_Complex_Medical_Conditions)
Medical and End-of-Life Decision-Making Preferences in Adolescents and Young Adults with Advanced Heart Disease and Their Parents - (https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2804557)

Source-Eurekalert