Teens with cancer report worse pain, mental health a year after advance care planning
Key takeaways:
- Teens with cancer reported higher levels of pain, anxiety and depression 12 months after advance care planning.
- These differences did not present at the 3- or 6-month follow-up.
Teens with cancer who participated in family-centered advance care planning reported greater levels of pain, depression and anxiety after 12 months, according to results published in Pediatrics.
The study was a follow-up to a 2022 trial that tested the effectiveness of Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC). FACE-TC required participants and their families to attend three 60-minute sessions to discuss goals of care and end-of-life planning.
Participants from the original trial who participated in FACE-TC reported better agreement with their caregivers about end-of-life treatment and improved quality of life for themselves and their families. Similar results were documented among adolescents with HIV and their families.
“Our preliminary work demonstrated that parents of teens with cancer did not know what their child would want for end-of-life care,” Maureen E. Lyon, PhD, FABPP, clinical health psychologist in the Center for Translational Research and Center for Genetic Medicine Research/Children’s Research Institute at Children’s National Hospital, told Healio. “This understanding lasted for 1 year after the intervention, a remarkably strong behavioral effect for a weekly 3-session intervention.”
In their study that was published this month, Lyon and colleagues evaluated secondary outcomes for the 126 adolescents (57% girls; mean age, 17 years; age range, 14 to 20 years) with cancer and their families. They enrolled the participants between July 16, 2016, and April 30, 2019, and assigned 83 to participate in FACE-TC sessions and 43 to treatment as usual as a control arm.
After participants completed the FACE-TC sessions, the researchers followed up at 3, 6 and 12 months to assess their physical, mental and spiritual well-being compared with their baseline well-being at enrollment.
After 3 months, a larger proportion of adolescents who participated in FACE-TC reported feeling prepared for the future (94% vs. 76%; P = .03) and, like their supporters, were on the same page (94% vs. 76%; P = .04) compared with the control group. The FACE-TC group also reported greater fatigue levels than the control group at 3 months (mean ratio, 1.14; 95% CI, 1.02-1.26) but not 6 or 12 months.
At 12 months’ follow-up, adolescents in the FACE-TC group were more likely to report anxiety or depression symptoms compared with the control group (mean ratio, 1.14; 95% CI, 1.04-1.25, and 1.12; 95% CI, 1.02-1.22, respectively). These differences were not seen at 3 or 6 months, the researchers noted.
Additionally, adolescents reported higher rates of pain at 12 months but not at 3 or 6 months (mean ratio, 1.1; 95% CI, 1-1.2).
Lyon and colleagues also did not find any significant differences in faith or meaning at any time during follow-up, but the participants whose 12-month follow-up occurred after the COVID-19 pandemic began had significantly lower levels of faith (mean ratio, –0.42; 95% CI, – 0.71 to – 0.14) or meaning and peace (–0.32; 95% CI, – 0.32 to –0.3) compared with those who completed their follow-ups before.
“Trial findings at 12 months were unexpected, as we did not see this effect at 3 or 6 months, nor did we see it in our previous trial with teens living with HIV,” Lyon said. “We are hoping to secure funding so we can go back and see what teens who participated in the study think happened; if they had more advanced disease than controls; if they were less religious than controls; or if they had less experience with death and dying than controls.”
Lyon and colleagues also plan to evaluate whether the benefits of discussing death and dying with teens and their families outweigh the long-term side effects they discovered in this study.
“[These] results highlight the importance of longitudinal studies,” Lyon said. “Understanding adolescent cancer survivors can help us better design effective interventions to enhance their quality of life and reduce their suffering.”
References:
- Friebert S, et al. Pediatrics. 2025;doi:10.1541/peds.2024-068699.
- Needle JS, et al. JAMA Netw Open. 2022;doi:10.1001/jamanetworkopen.2022.20696.
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