Video Inspired Discussions About Ethical Outcomes in Pediatrics

The goal of this clinical trial is to learn if the VIDEO-PEDS intervention works to improve Goals of Care communication between clinicians and parents of children with cancer. The main questions it aims to answer are: Does the intervention improve Goals of Care documentation? Does it improve patient outcomes (including less invasive preferences for resuscitation and interventions, less hospital utilization, and more palliative care and hospice use)? Does it improve parent outcomes (including health satisfaction and feeling heard and understood per survey scores)?

Sex

All

Inclusion Criteria:

Patient

* Age 0-12 years
* Diagnosed with any type or stage of cancer
* Receiving cancer directed treatment

Parent

* Decision maker for the child.
* Biological parent, step-parent, legal guardian (e.g., adoptive parent), or grandparent with medical consent authority.
* Has a child meeting the child inclusion criteria listed above.
* Able to communicate in English or Spanish (the languages of the video decision aids).

Exclusion Criteria:

Patient

* Not receiving primary medical care from the cancer clinic (e.g., second-opinion consultations only)
* Already referred to and fully consulted by the palliative care team
* Prognosis of less than a 2-month life expectancy

Parent

* Visually impaired beyond 20/200 corrected and unable to view the video (note: hearing impaired is not an exclusion as the videos are closed captioned).
* Psychological state not appropriate for GOC discussions, as determined by the primary oncologist per the opt-out.
* Participants who do not speak English or Spanish

• BACKGROUNDVolandes AE, Zupanc SN, Lakin JR, Cabral HJ, Burns EA, Carney MT, Lopez S, Itty J, Emmert K, Martin NJ, Cole T, Dobie A, Cucinotta T, Joel M, Caruso LB, Henault L, Dugas JN, Astone K, Winter M, Wang N, Davis AD, Garde C, Rodriguez PM, El-Jawahri A, Moseley ET, Das S, Sciacca K, Ramirez AM, Gromova V, Lambert S, Sanghani S, Lindvall C, Paasche-Orlow MK. Video Intervention and Goals-of-Care Documentation in Hospitalized Older Adults: The VIDEO-PCE Randomized Clinical Trial. JAMA Netw Open. 2023 Sep 5;6(9):e2332556. doi: 10.1001/jamanetworkopen.2023.32556. PMID 37695586
• BACKGROUNDSnaman JM, Feifer D, Helton G, Chang Y, El-Jawahri A, Volandes AE, Wolfe J. A Pilot Randomized Trial of an Advance Care Planning Video Decision Support Tool for Adolescents and Young Adults With Advanced Cancer. J Natl Compr Canc Netw. 2023 Jul;21(7):715-723.e17. doi: 10.6004/jnccn.2023.7021. PMID 37433434
• BACKGROUNDFeifer D, Helton G, Wolfe J, Volandes A, Snaman JM. Adolescents and young adults with cancer conversations following participation in an advance care planning video pilot. Support Care Cancer. 2024 Feb 17;32(3):164. doi: 10.1007/s00520-024-08372-y. PMID 38367086
• BACKGROUNDLindsay ME, de Oliveira S, Sciacca K, Lindvall C, Ananth PJ. Harnessing Natural Language Processing to Assess Quality of End-of-Life Care for Children With Cancer. JCO Clin Cancer Inform. 2024 Sep;8:e2400134. doi: 10.1200/CCI.24.00134. PMID 39265122
• BACKGROUNDJohnston EE, Alvarez E, Saynina O, Sanders L, Bhatia S, Chamberlain LJ. Disparities in the Intensity of End-of-Life Care for Children With Cancer. Pediatrics. 2017 Oct;140(4):e20170671. doi: 10.1542/peds.2017-0671. PMID 28963112
• BACKGROUNDLindvall C, Deng CY, Moseley E, Agaronnik N, El-Jawahri A, Paasche-Orlow MK, Lakin JR, Volandes A, Tulsky TAIJA. Natural Language Processing to Identify Advance Care Planning Documentation in a Multisite Pragmatic Clinical Trial. J Pain Symptom Manage. 2022 Jan;63(1):e29-e36. doi: 10.1016/j.jpainsymman.2021.06.025. Epub 2021 Jul 14.