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Randomized Controlled Trial
. 2025 Aug 15;131(16):e70025.
doi: 10.1002/cncr.70025.

Factors influencing engagement with patient-directed and facilitated advance care planning interventions for patients with advanced cancer

Kimberly J Rak  1 , Renusha Indralingam  2 , Aaron Richardson  3 , Neha Dhole  4 , Shane Belin  5   6 , Monica C Leon Cadavid  1 , Yuxin Zhou  7   8 , Georgeann Booth  9 , Bernard Hammes  10 , Betty Ferrell  11 , Douglas B White  1 , Robert M Arnold  12 , Rebecca L Sudore  13 , Megan Crowley-Matoka  14 , Yael Schenker  5   6   15
Affiliations
Randomized Controlled Trial

Factors influencing engagement with patient-directed and facilitated advance care planning interventions for patients with advanced cancer

Kimberly J Rak et al. Cancer. .

Abstract

Background: Advance care planning (ACP) for patients with cancer is guideline recommended. However, there are significant challenges to engagement. Patient-facing ACP programs have been developed to improve access and engagement. This study aimed to identify factors impacting engagement for patients with cancer generally, and specifically for two patient-facing approaches.

Methods: As part of a randomized trial comparing the effectiveness of facilitated versus patient-directed ACP, interviews were conducted with patients with cancer who participated in the two interventions. A thematic analysis approach was used, iteratively reviewing transcripts to identify and group concepts into themes.

Results: Between 2020 and 2023, 60 participants in the parent study were interviewed (31 facilitated and 29 patient-directed). Several themes were identified that contributed to ACP engagement, including a realist attitude, increased skills from previous ACP, and motivational beliefs such as alleviating burden for loved ones. Features of ACP design that facilitated engagement included intellectualization and normalization of content. For facilitated ACP, patients valued the interpersonal exchange with the interventionist. For patient-directed ACP, participants appreciated the ability to step away and come back to the website. Participants discussed how ACP needs to be an iterative process as people have varying capacity or motivation to engage at different timepoints.

Conclusions: Many patients with cancer are motivated to engage in ACP to decrease burden on others and receive patient-centered care. A constellation of factors interact as facilitators or barriers to engagement. Therefore, a one-time, one-size approach is not recommended; facilitating engagement may require flexible approaches offered at multiple time points.

Keywords: advance care planning; comparative effectiveness research; patient engagement; patient‐centered care; qualitative research.

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Conflict of interest statement

Robert M. Arnold reports royalties from Cambridge University Press, UpToDate, VitaTalk. Yael Schenker reports serving as a consultant for UpToDate, Emmi Solutions. Douglas B. White reports serving in Consulting or Advisory Role for UpToDate. The remaining authors have no conflicts of interest to disclose.

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