Video Inspired Discussions about Ethical Outcomes in Pediatrics (VIDEO-PEDS)

Parents of children with cancer often face complicated decision making throughout their child’s illness. Goals-of-care (GOC) interventions help patients, their families, and clinicians communicate and discuss preferences for treatments together to ensure medical care is consistent with the family’s values, goals, and informed preferences. To date, most GOC interventions have focused on adults and adolescents resulting in a critical disparity of available tools for children dying of cancer. GOC conversations between parents, who serve as primary decision makers for children, and clinicians often rely on verbal or written information about possible medical interventions, such as cardiopulmonary resuscitation or placement on a respirator, during crises of clinical decline. However, this GOC process is often inadequate as it is presently conducted, leaving families ill-prepared in times of distress. The majority of children with cancer and their families prefer to die at home, yet the majority of children with cancer die in the hospital, and this disproportionately affects African American, Hispanic, and rural patients. Novel interventions are needed to ensure GOC conversations happen earlier to ensure goal-concordant care. To address these shortcomings, we have developed theory-based GOC video decision aids in English and Spanish for parents of children with cancer. We have shown the efficacy of similar decision aids in adults using Natural Language Processing (NLP), a form of computer-assisted abstraction, in pragmatic trials; but have not examined the impact of these videos in children with cancer and their parents. The overall objective of this UG3/UH3 proposal entitled Video Inspired Discussions for Ethical Outcomes in Pediatrics (VIDEO-PEDS) is to build the infrastructure for and conduct a large randomized pragmatic trial of a GOC video decision aid in three diverse health care systems (Dana-Farber Cancer Institute, Children’s Healthcare of Atlanta, and the University of Alabama). During the UG3 Phase (first two years), we will refine the GOC video, finalize clinics and workflows, validate our NLP process, and pilot-test the intervention. During the UH3 Phase (subsequent four years), we will conduct a large, pragmatic, randomized, waitlist-controlled trial including 504 children with cancer aged 0-12 years. This trial will include 76 African American, 76 Hispanic, and 76 rural children with cancer by design. Children will be randomized to Waitlist- Control or the GOC Video Intervention in which the video will be shared with parents along with in-person and telehealth sessions conducted by navigators to elucidate GOC preferences. After the intervention period, the waitlist will open and all parents (i.e., Waitlist-Controls) will receive the intervention. Using NLP to detect outcomes (e.g., GOC documentation), we hypothesize that intervention children, as compared to controls, will have more GOC documentation (primary outcome). This proposal is significant, innovative, and feasible. The intervention is a practical and innovative approach to help children with cancer and their parents.