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

Author:

Snaman Jennifer M.12,Feifer Deborah1,Helton Gabrielle3,Chang Yuchiao4,El-Jawahri Areej4,Volandes Angelo E.4,Wolfe Joanne4

Affiliation:

1. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts

2. Department of Pediatrics, Boston Children’s Hospital, Boston, Massachusetts

3. University of Colorado School of Medicine, Aurora, Colorado

4. Massachusetts General Hospital, Boston, Massachusetts

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.

Publisher

Harborside Press, LLC

Subject

Oncology

Reference40 articles.

1. Closing the gap: research and care imperatives for adolescents and young adults with cancer

2. Palliative care involvement is associated with less intensive end-of-life care in adolescent and young adult oncology patients;Snaman JM,2017

3. High intensity of end-of-life care among adolescent and young adult cancer patients in the New York State Medicaid program;Mack JW,2015

4. End-of-life care intensity among adolescent and young adult patients with cancer in Kaiser Permanente Southern California;Mack JW,2015

5. Family-centered advance care planning for teens with cancer;Lyon ME,2013

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