Parental Decision-Making for Children With Relapsed Neuroblastoma

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 for advanced cancer 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. Children with relapsed
neuroblastoma have advanced cancer but many options for care, including established cancer
regimens, clinical trials, and palliation. Relapsed neuroblastoma presents an ideal model for
parental decision-making in the setting of a complex array of choices. We will follow 120
parents at 8 institutions over time, beginning at relapse and continuing over 18 months.
Parent interviews every 3 months and reviews of medical records throughout that time will be
used to evaluate the ways that parental preferences for the aggressiveness of treatment
change over time (Aim 1). Parental perception that care has been burdensome will be evaluated
as possible driver of change in decision-making (Aim 2). Ideally, parent values for care
would be the primary driver of treatment goals. Thus we will evaluate the extent to which
parental understanding of prognosis, treatment options, and expected benefits and burdens of
treatment can allow decision-making consonant with parental preferences in the absence of
prior negative experiences with care (Aim 3). Finally, in-depth parent interviews will allow
us to evaluate personal factors that drive parental decision-making (Aim 4). Throughout the
study, a Parent Advisory Group will guide assessment of care preferences and decision-making.

Inclusion Criteria:

- 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.

Exclusion Criteria:

- Delirium/dementia as judged by the treating physician