PDMCRN: Parental Decision-Making for Children with Relapsed Neuroblastoma

Category:

Quality of Life

Eligibility Overview:

This is a non-therapeutic clinical trial that is only open to St. Jude patients.

  • Participant is the parent of a child with relapsed or refractory high risk neuroblastoma receiving primary oncology care or a second opinion at a participating site.
  • Parent aged 18 year or older, of a child aged ≤ 18 years.
  • Participating parent if the primary decision maker for the family.
  • Participating parent is English-speaking.

Description

Parental end‐of‐life (EOL) decision‐making for children with cancer is often poorly informed. Many parents have overly optimistic beliefs about prognosis and as a result choose aggressive measures at the EOL, which are associated with greater suffering. Yet most parents wish to limit suffering, and in retrospect, many regret choices for EOL cancer treatment. These findings suggest that many parents are not sufficiently informed to make decisions that are consonant with their preferences.

This proposed study will evaluate parental EOL decision‐making, addressing gaps in the literature in 3 important respects:

  1. Previous work on EOL decision‐making for children with cancer has been cross sectional and, among bereaved parents, retrospective, even though parents’ understanding of prognosis and decisions about care evolve over time.
  2. Existing work focuses on aggressive EOL care as a negative outcome, and such care may be against many parents’ wishes. However, some parents wish to pursue aggressive measures even when they recognize a poor prognosis.
  3. Previous studies have focused on various groups of childhood cancers, making it difficult to determine whether differences in decision‐making reflect different disease processes, different options for care, or inherent differences in parents and children. This study focuses on a single disease, relapsed neuroblastoma, as a model for EOL decision‐making.

Objectives

  • To determine nature and determinants of change over time in parental preferences for the aggressiveness of their child's treatment.
  • To learn about the impact of parental perception that care was burdensome on the EOL decision-making trajectory.
  • To learn about the extent to which understanding of prognosis, treatment options, and expected treatment outcomes allow decision-making consonant with parental preferences, when "burdensome care experience" is lacking.
  • To learn about contextual factors driving EOL decision-making, using in-depth interviews when shifts in knowledge/preferences for care occur.

Eligibility

Inclusion Criteria

  • Participant is the parent of a child with relapsed or refractory high risk neuroblastoma receiving primary oncology care or a second opinion at a participating site.
  • Parent aged 18 year or older, of a child aged ≤ 18 years.
  • Participating parent if the primary decision maker for the family.
  • Participating parent is English-speaking.

Exclusion Criteria

  • Participating parent is non-English-speaking.

Principal Investigator

Justin Baker, MD

St. Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis, TN 38105  USA
Voice: 1-888-226-4343 or 901-595-4055
24-Hour Emergency Access Pager: 1-800-349-4334
Email: referralinfo@stjude.org

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.