Parental Decision-Making for Children With Relapsed Neuroblastoma
1 other identifier
observational
96
1 country
9
Brief Summary
Parental decision-making for children with advanced cancer is complex. Many parents have overly optimistic beliefs about prognosis and as a result choose aggressive measures even at the end of life, which are associated with greater suffering. Yet most parents wish to limit suffering, and in retrospect, many regret choices for cancer treatment for advanced cancer. These findings suggest that parents do not always have the information they need to make decisions that reflect their preferences. The proposed study will evaluate parental decision-making in advanced cancer, addressing gaps in the literature in 3 important respects. 1) Previous work on decision-making for children with advanced cancer has typically looked at decisions at one point in time, often asking parents to reflect on decisions after the child's death, even though parents' understanding of prognosis and decisions about care evolve over time. We will evaluate parental decision-making for advanced cancer over time. 2) Existing work focuses on aggressive end-of-life care as the worst possible outcome. However, some parents wish to pursue aggressive measures even when they recognize that the child has little chance for cure. We will evaluate the extent to which parental decision-making is informed and consonant with preferences, regardless of whether decisions lead to aggressive or palliative care. 3) Previous studies have focused on groups of different childhood cancers, making it difficult to ascertain whether differences in decision-making reflect differences in diseases, options for care, or parent preferences. We will focus on a single disease, relapsed neuroblastoma, as a model for parental decision-making.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P50-P75 for all trials
Started May 2013
Longer than P75 for all trials
9 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
Study Start
First participant enrolled
May 1, 2013
CompletedFirst Submitted
Initial submission to the registry
October 30, 2014
CompletedFirst Posted
Study publicly available on registry
November 4, 2014
CompletedPrimary Completion
Last participant's last visit for primary outcome
April 1, 2019
CompletedStudy Completion
Last participant's last visit for all outcomes
June 1, 2027
ExpectedJuly 29, 2025
July 1, 2025
5.9 years
October 30, 2014
July 25, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Number of parents who prefer life-prolonging care
Questionnaire-based measure
18 months
Secondary Outcomes (3)
Number of parents who experience decisional regret
18 months
Number of parents who report that care has been burdensome
18 months
Number of parents who report that care received is consonant with the parent's preferences
18 months
Eligibility Criteria
Parents of children with relapsed or refractory neuroblastoma.
You may qualify if:
- Parent of a child with relapsed or refractory high risk neuroblastoma, as defined by the International Neuroblastoma Risk Group, without respect to timing of first determination of relapse or refractory disease;
- Parent aged 18 years or older, of a child aged \<=18 years;
- English- or Spanish-speaking.
You may not qualify if:
- Delirium/dementia as judged by the treating physician
Contact the study team to confirm eligibility.
Sponsors & Collaborators
Study Sites (9)
Children's Hospital of Los Angeles
Los Angeles, California, 90027, United States
Stanford/Packard's Children's Hospital
Palo Alto, California, 94304, United States
The University of Chicago Medical Center
Chicago, Illinois, 60637, United States
Dana-Farber Cancer Institute
Boston, Massachusetts, 02215, United States
Columbia University Medical Center
New York, New York, 10032, United States
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 19104, United States
St. Jude Children's Research Hospital
Memphis, Tennessee, 38105, United States
Cook's Children's Healthcare System
Fort Worth, Texas, 76104, United States
Seattle Children's Hospital
Seattle, Washington, 98145, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Jennifer W Mack, MD MPH
Dana-Farber Cancer Institute
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Attending Physician, Pediatric Oncology
Study Record Dates
First Submitted
October 30, 2014
First Posted
November 4, 2014
Study Start
May 1, 2013
Primary Completion
April 1, 2019
Study Completion (Estimated)
June 1, 2027
Last Updated
July 29, 2025
Record last verified: 2025-07