NCT04059393

PCRC-Supported Legacy Intervention in Pediatric Palliative Care

Completed NA Last updated 18 November 2023

What this trial tests

NA trial testing Internet-Based Intervention in Care Giver in 300 participants. Completed in 5 June 2018.

Timeline

27 July 2015

Primary endpoint
5 June 2018

5 June 2018

Quick facts

Lead sponsor	Vanderbilt-Ingram Cancer Center
Phase	NA
Status	Completed
Study type	INTERVENTIONAL
Allocation	randomized
Design	parallel
Masking	none
Primary purpose	supportive care
Enrollment	300
Start date	27 July 2015
Primary completion	5 June 2018
Estimated completion	5 June 2018
Sites	1 location across United States

Drugs / interventions tested

• Internet-Based Intervention
• Best Practice
• Quality-of-Life Assessment
• Questionnaire Administration

Conditions studied

• Care Giver — all drugs for Care Giver →
• Recurrent Malignant Neoplasm — all drugs for Recurrent Malignant Neoplasm →
• Refractory Malignant Neoplasm — all drugs for Refractory Malignant Neoplasm →

Sponsor

Vanderbilt-Ingram Cancer Center — full company profile →

Who can join

Adults 7 to 17, any sex, with Care Giver or Recurrent Malignant Neoplasm. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

This trial studies how well a web-based legacy intervention works in improving the quality of life in caregivers and younger patients with cancer that has come back (recurrent) or does not respond to treatment (refractory). Legacy-making, defined as doing or saying something to be remembered, may reduce the suffering of children with cancer and their caregivers. Currently, there is little information about what kinds of legacy-making activities are helpful from the perspective of children. Using a web-based digital storytelling intervention, this study may help researchers examine what children think about these legacy-making activities and what kinds of activities might be helpful to them.

Publications & conference data

7 peer-reviewed publications reference this trial (live from Europe PMC):

1. Randomized Clinical Trial of a Legacy Intervention for Quality of Life in Children with Advanced Cancer.
   Akard TF, Dietrich MS, Friedman DL, Wray S, et al · · 2021 · cited 27× · PMID 32996842 · DOI 10.1089/jpm.2020.0139
2. Improved Parent-Child Communication following a RCT Evaluating a Legacy Intervention for Children with Advanced Cancer.
   Akard TF, Dietrich MS, Friedman DL, Gerhardt CA, et al · · 2021 · cited 24× · PMID 34239227 · DOI 10.1080/09699260.2020.1826778
3. Facebook Recruitment for Children with Advanced Cancer and Their Parents: Lessons from a Web-based Pediatric Palliative Intervention Study.
   Cho E, Gilmer MJ, Friedman DL, Hendricks-Ferguson VL, et al · · 2021 · cited 12× · PMID 34737490 · DOI 10.1080/09699260.2021.1898077
4. Associations of Age, Gender, and Family Income with Quality of Life in Children With Advanced Cancer.
   Robson PC, Dietrich MS, Akard TF. · · 2021 · cited 9× · PMID 33686901 · DOI 10.1177/1043454221992321
5. Digital Stories Created by Children With Advanced Cancer.
   Whitlow ML, Gilmer MJ, Dietrich MS, Cho E, et al · · 2024 · cited 1× · PMID 39257031 · DOI 10.1177/27527530241267296
6. Research Cooperative Groups in Pediatric Palliative Care Research.
   Akard TF, Gilmer MJ. · · 2020 · cited 1× · PMID 34223492 · DOI 10.1089/pmr.2020.0043
7. Ethical Considerations in Oncology and Palliative Care Research During COVID-19.
   Akard TF, Gilmer MJ, Hendricks-Ferguson VL. · · 2022 · PMID 35467436 · DOI 10.1177/27527530221073298