TABLE 1.

Parent, Child, and Care Characteristics (N = 95)

Parent Characteristics	Percentagea
Sex
Female	81
Male	19
Education
>High school	82
≤High school	18
Race/ethnicity
White	58
Black	8
Hispanic	23
Other	11
Site
Boston Children’s Hospital/Dana-Farber Cancer Institute	22
Children’s Hospital Los Angeles	18
Children’s Hospital of Philadelphia	20
Columbia University Irving Medical Center	3
Cook Children’s Medical Center	7
Seattle Children’s Research Institute	6
St. Jude Children’s Research Hospital	6
Lucile Packard Children’s Hospital at Stanford	9
University of Chicago	7
Care at study site
Primary oncology care	64
Second opinion	36
Child Characteristics
Sex
Female	40
Male	60
Median age at parent enrollment (IQR), y	6 (4–8)
Care and Treatment Characteristics
Neuroblastoma status
Recurrent	76
Refractory to initial therapy	23
Median mo between diagnosis and first recurrence (IQR)	13 (5–24)
Median mo between first recurrence and survey (IQR)	11 (5–25)
Median no. of prior chemotherapeutic regimens (IQR)	3 (2–5)
Median no. of prior clinical trials (IQR)	1 (1–2)
Documented treatment options	80
Experimental therapy on a phase 1/2 clinical trial	58
Established high-intensity regimen	41
Established low-intensity regimen	26
No cancer-directed therapy	12
Treatment decision
Experimental therapy on a phase 1/2 clinical trial	43
Established high-intensity regimen	27
Established low-intensity regimen	26
No cancer-directed therapy	5
Documented prognosis discussion since last recurrence	33
Medical care since last recurrence
>5 hospital d/mo	26
>5 outpatient or emergency department visits/mo	8
ICU care	13
Mechanical ventilation	1
Blood pressure support	1
Bacteremia	9
Highly myelosuppressive therapy requiring stem cell infusion	18
Composite outcomes
Any of the above	49
Frequent inpatient or outpatient visitsb	29
Intensive medical carec	19
Care and Treatment Characteristics
Palliative care discussion	7
Hospice use	2
DNR order or home comfort care form	0

Abbreviations: DNR, do not resuscitate; ICU, intensive care unit, IQR, inter-quartile range.

^aShown as the percentage unless otherwise specified.

^bMore than 5 hospital days or >5 outpatient/emergency department visits per 30 days.

^cAny ICU care, mechanical ventilation, blood pressure support, or bacteremia.