Parental Decision-Making for Children With Relapsed Neuroblastoma

Running, not enrolling

Conditions studied: Relapsed Neuroblastoma

In brief

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.

Key facts

Study ID: NCT02282735
Run by: Dana-Farber Cancer Institute
People needed: 96
Starts: 2013-05-01
Expected to finish: 2027-06-01
Last updated by the study team: 2025-07-29

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

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

Where it is running

Columbia University Medical Center — New York, New York, United States
The Children's Hospital of Philadelphia — Philadelphia, Pennsylvania, United States
St. Jude Children's Research Hospital — Memphis, Tennessee, United States
Cook's Children's Healthcare System — Fort Worth, Texas, United States
Seattle Children's Hospital — Seattle, Washington, United States
Children's Hospital of Los Angeles — Los Angeles, California, United States
Stanford/Packard's Children's Hospital — Palo Alto, California, United States
The University of Chicago Medical Center — Chicago, Illinois, United States
Dana-Farber Cancer Institute — Boston, Massachusetts, United States

Full record on ClinicalTrials.gov

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