Adolescents and young adults with advanced heart disease are actively involved in medical decisions that may affect them.
This study has been published in the journal ‘JAMA Network Open’.
“As a child psychologist, I have found that health care communication is one of the most important — yet one of the most underrated — aspects of care,” said lead author Melissa Cousineau, Ph.D., director of the UM Congenital Heart Center’s psychosocial and educational programs. . (M-COPE) at University of Michigan Health CS Mott Children’s Hospital.
Also Read: Soft Skin Patch Can Detect Early Signs Of Heart Attack And Stroke: Study
“How we communicate about diagnosis, prognosis, treatment options and coping with additional effects, medical adherence, and health outcomes. In pediatric healthcare, it is important to better understand the communication and medical decision-making preferences of the youth we care for,” she said.
Researchers surveyed 53 young adults ages 12-24 with advanced heart disease, 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.
“In our sample of patients with severe heart disease, we found that most adolescents and young adults want to be aware of their treatment options, risks and prognostic information and want active involvement in their medical decisions,” Cousineau said.
But there was a striking difference between the preferences of young patients and their parents.
About 45 percent of patients specifically desired active, patient-led decision-making for their heart disease management, including discussion of adverse effects or risks of treatment, surgical details, quality of life, and life expectancy.
Many of the young people surveyed agreed with the statement “I have to make a decision but strongly consider the opinion of the doctor and my parents.” More than half wanted to be involved in end-of-life care decisions if they were terminally ill.
Meanwhile, parents and guardians preferred a shared decision-making approach between them and their child’s doctors.
“The largest proportion of parents felt that medical decision-making for their adolescent or young adult should be made in partnership with the medical team,” Cousineau said. “
“I often find that parents and child health care practitioners are trying to shield young people from bad, sad or difficult news,” she said, “however, for a large number of young people, keeping them from fully understanding or engaging in their health care, information is associated with death or dying. Even when related, can be more isolating and anxiety-provoking.”
Cousineau says research into patient communication and medical decision-making was recently identified as a top priority in the field of palliative care in pediatric cardiology.
“There is no one-size-fits-all approach to medical communication and decision-making. Every child, adolescent, young adult, and family system has different needs and preferences,” she said.
“It is for us to better understand young people’s needs and preferences in order to best incorporate them into medical care decisions in a way that aligns with their needs. Ultimately, it is interventions to support parents and health care practitioners working with young people. will inform the development of. Facing serious illnesses and difficult medical courses,” he added.
Senior author Kurt Schumacher, MD, a pediatric cardiologist at Mott, says the study has important implications for physicians who care for children and young adults with severe heart disease.
“The study should capture the attention of all clinicians caring for children with significant heart disease. We all communicate with families, but not everyone knows the information our patients want to receive and discuss,” he added, “both parents and providers when making decisions about their heart disease. Teens and young adults may underestimate how actively they want to be involved.”
“These findings underscore the importance of understanding each individual’s preferences and personalizing communication methods with each young patient, regardless of their diagnosis, disease severity or symptoms,” Schumacher added.
“We need to continue to pursue personalized communication tools and decision-making interventions with young patients with advanced heart disease. And we need to help providers become comfortable and open with these discussions.”
This story is published from the Wire Agency feed without modification to the text. Only the headline has been changed.