Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Randomized Controlled Trial
. 2023 Jul;21(7):715-723.e17.
doi: 10.6004/jnccn.2023.7021.

A Pilot Randomized Trial of an Advance Care Planning Video Decision Support Tool for Adolescents and Young Adults With Advanced Cancer

Jennifer M Snaman  1   2 , Deborah Feifer  1 , Gabrielle Helton  3 , Yuchiao Chang  4 , Areej El-Jawahri  4 , Angelo E Volandes  4 , Joanne Wolfe  4
Affiliations
Randomized Controlled Trial

A Pilot Randomized Trial of an Advance Care Planning Video Decision Support Tool for Adolescents and Young Adults With Advanced Cancer

Jennifer M Snaman et al. J Natl Compr Canc Netw. 2023 Jul.

Abstract

Background: Adolescents and young adults (AYAs) with advanced cancer often receive intensive end-of-life care, yet it is unclear if this is goal-concordant. Advance care planning (ACP) video tools may promote identification and communication of AYA preferences.

Patients and methods: We conducted a dual-site, 1:1 pilot randomized controlled trial of a novel video-based ACP tool in 50 dyads of AYA patients aged 18 to 39 years with advanced cancer and their caregivers. ACP readiness and knowledge, preferences for future care, and decisional conflict were obtained pre, post, and 3 months after the intervention and compared between groups.

Results: Of the 50 AYA/caregiver dyads enrolled, 25 (50%) were randomized to the intervention. Participants primarily identified as female, white, and non-Hispanic. Most AYAs (76%) and caregivers (86%) identified their overall goal as life-prolonging preintervention; less identified this goal postintervention (42% AYAs; 52% caregivers). There was no significant difference in change in proportion of AYAs or caregivers choosing life-prolonging care, CPR, or ventilation between arms postintervention or at 3 months. The change in participant scores for ACP knowledge (AYAs and caregivers) and ACP readiness (AYAs) from preintervention to postintervention was greater in the video arm compared with the control arm; the difference in caregivers' scores for decisional conflict from preintervention to postintervention in the video arm was statistically significant (15 vs 7; P=.005). Feedback from the video participants was overwhelmingly positive; of the 45 intervention participants who provided video feedback, 43 (96%) found the video helpful, 40 (89%) were comfortable viewing the video, and 42 (93%) indicated they would recommend the video to other patients facing similar decisions.

Conclusions: Most AYAs with advanced cancer and their caregivers preferred life-prolonging care in advanced illness, with fewer preferring this type of care postintervention. A brief video-based ACP tool was well-liked by participants and improved caregiver decisional certainty. Videos may be a useful tool to inform AYAs and caregivers about end-of-life care options and promote ACP discussions.

Trial registration: ClinicalTrials.gov NCT04149704.

Keywords: Advance care planning; adolescents and young adults; advanced cancer; end of life; randomized trial.

PubMed Disclaimer

Figures

Figure 1.
Figure 1.
Feedback from participants (n545) randomized to the video arm. Abbreviation: AYA, adolescent and young adult.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

References

    1. Closing the gap: research and care imperatives for adolescents and young adults with cancer. Report of the Adolescent and Young Adult Oncology Progress Review Group. Presented at the National Cancer Advisory Board Meeting; September 6, 2006. Accessed March 1, 2023. Available at: https://deainfo.nci.nih.gov/advisory/ncab/archive/139_0906/presentations...
    1. Snaman JM, Kaye EC, Lu JJ, et al. Palliative care involvement is associated with less intensive end-of-life care in adolescent and young adult oncology patients. J Palliat Med 2017;20:509–516. - PubMed
    1. Mack JW, Chen K, Boscoe FP, et al. High intensity of end-of-life care among adolescent and young adult cancer patients in the New York State Medicaid program. Med Care 2015;53:1018–1026. - PMC - PubMed
    1. Mack JW, Chen LH, Cannavale K, et al. End-of-life care intensity among adolescent and young adult patients with cancer in Kaiser Permanente Southern California. JAMA Oncol 2015;1:592–600. - PMC - PubMed
    1. Lyon ME, Jacobs S, Briggs L, et al. Family-centered advance care planning for teens with cancer. JAMA Pediatr 2013;167:460–467. - PubMed

Publication types

Associated data