Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer

Abstract

Background: Legacy-making (actions/behaviors aimed at being remembered) may be a significant component for quality of life (QOL) during advanced illness and end of life. Although legacy interventions have been tested in adults, the impact of legacy activities on QOL for children has yet to be clearly defined. Objective: This study examined the impact of our newly developed web-based legacy intervention on dimensions of QOL among children (7-17 years old) with advanced cancer. Design: This single-site randomized clinical trial (RCT) used a two-group waitlist control design. The legacy intervention guided children to create digital storyboards by directing them to answer legacy questions about themselves (personal characteristics, things they like to do, and connectedness with others) and upload photographs, video, and music. Setting/Subjects: Facebook advertisements recruited children (ages 7-17) with relapsed/refractory cancer and their parents from the United States. Child-parent dyads (N = 150) were randomized to the intervention or usual care group, and 97 dyads were included for analysis. Measurements: Children and parents completed the PedsQL Cancer Module preintervention (T1) and postintervention (T2). Results: Although not statistically significant, legacy-making demonstrated small effects in child procedural anxiety and perceived physical appearance (Cohen's d 0.35-0.28) compared to the wait-list control group. Conclusions: This study contributes important discoveries, including support for the feasibility of a RCT webbased legacy intervention for children with advanced cancer. We did not find convincing evidence supporting the hypothesis that legacy-making improved child dimensions of QOL across time. Overall, this is a null study that warrants discussion on possible reasons for limited findings. Future legacy intervention research is needed using qualitative and quantitative methods, as well as child and parent reports, to determine how such services may improve dimensions of QOL for pediatric palliative care populations. ClinicalTrials.gov number NCT04059393.

Online Interventions to Improve Mental Health of Pediatric, Adolescent, and Young Adult Cancer Survivors: A Systematic Review and Meta-Analysis

“…Most studies ( n = 11) were developed in the US, and the rest in China and Australia. We found that 46.2% of the studies aimed at PAYA cancer survivors' general mental health prevention ( n = 6) ( 61 – 66 ). In contrast, 53.8% of the studies focused on the participants' physical health ( n = 7) ( 67 – 73 ), including physical activity enhancement ( n = 5; 38.5%) ( 68 , 69 , 71 – 73 ), sleep ( n = 1; 7.7%) ( 70 ), and chronic pain ( n = 1; 7.7%) ( 67 ).…”

“…Despite the innovative approach, online intervention contents for adolescents remain insufficient, necessitating the ongoing clinical and research efforts to improve care and mental health outcomes for PAYA cancer survivors specifically. One possible explanation is that most interventions did not provide adolescent-specific materials ( 61 , 63 , 64 , 68 ). As a result, online interventions do not adequately meet age-specific needs.…”

Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study

“…3 Other results related to the webbased legacy intervention have been reported elsewhere. [24][25][26][27][28]…”

Long-Term Follow-Up of Legacy Services Offered by Children's Hospitals in the United States

“…24,27,31 Legacy interventions in children with cancer has shown promise to improve emotional quality of life, communication, and coping among children with cancer (aged 7-17 years). 16,22,23,32,33 Parents have reported that legacy interventions improved parentchild communication (72%, n = 57), parent emotional comfort (63%, n = 50), parent coping (46%, n = 36), child expression of feelings (86%, n = 70), and child emotions (59%, n = 48). 22 Our previous national survey of providers described legacy services offered at children's hospitals in the United States.…”

“…22 Our previous national survey of providers described legacy services offered at children's hospitals in the United States. 16 Since that survey in 2012, research re-lated to legacy interventions has advanced, 17,22,23,[32][33][34] as well as availability, awareness, and acceptability of legacy services. As a result, legacy interventions and services as a component of palliative care has received increased recognition.…”