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Pediatric Advance Care Planning in Adolescents with Cancer

January 23, 2025

Editor’s Note: Dr. Emmanuel (Manny) Aryee (he/him) is a pediatric resident at Children’s Hospital of Milwaukee and this year’s Editorial Fellow at Pediatrics. -Rachel Y. Moon, MD, Associate Editor, Digital Media, Pediatrics

Many people consider advance care planning an activity exclusively reserved for the elderly.

While you need to be 18 to legally make an advanced directive, advance care planning is actually recommended for everyone, since a medical emergency at any age could leave you unable to communicate your preferences in your health care.

Serious or terminal illness can be very scary to patients at all ages and even more so for children battling cancer. They can sometimes feel the loss of autonomy and, in cases of family disagreement on treatment plans, guilt.

Pediatric advance care planning is a family-centered decision-making process for children and young adults that involves discussion about goals of care and future medical care treatment preferences before a medical crisis.   

Sarah Friebert, MD, and colleagues from Akron Children’s Hospital, George Washington University, Stanford University, and the University of Minnesota, in an article early releasing in Pediatrics this month (10.1542/peds.2024-068699), investigate the efficacy of Family-centered Pediatric Advance Care Planning for Teens with Cancer (FACE-TC) on adolescents’ quality of life.

Their study was a prospective, assessor-blinded, intent-to-treat, 2-arm randomized controlled trial involving English-speaking adolescents between ages 14 and 21 years old with no known developmental delays, no depression, and who knew about their diagnosis. Participants were recruited from 4 US pediatric quaternary hospitals and randomized in a 2:1 ratio into either FACE-TC or a treatment as usual control.

Here are some of the interesting findings from the article:

  • Contrary to the authors’ hypothesis, FACE-TC did not result in any improvement in physical, emotional, or spiritual quality of life measures.
  • At 12 months post-intervention, FACE-TC participants experienced increased anxiety, depressive symptoms, and pain interference than the participants in the control group.
  • Finally, while the FACE-TC participants reported feeling more prepared and supported for future medical decision-making and being on the same page with their families, this effect was not sustained at the one-year mark.

These paradoxical findings lead to a very interesting discussion on how the results could be explained. Read the full article for an in-depth deliberation on the factors contributing to these fascinating findings, including study limitations and the potential impact of the COVID-19 pandemic on the findings.

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