Table I.

Source of Data Elements

Variable Assessed	Variable Source	Survey Question (if applicable)	Novel S5Cs Question	Survey Domains (if applicable)
Parent age	Survey	Calculated: When did your child die? less What year were you born?		Family characteristics
Parent gender	Survey	What is your gender? [Male, Female, Other]		Family characteristics
Parent race	Survey	Which of the following best describes your racial background? Choose all that apply [American Indian/Alaskan Native, Asian, Black or African American, Native Hawaiian or Other Pacific Islander, White, Other]		Family characteristics
Time in years since child’s death	Survey	Calculated: Date survey completed? less When did your child die?
English as primary language	Survey	Is English your first language? [Yes, No]		Family characteristics
Parent income	Survey	Please estimate in dollars your total combined family income for the last 12 months of your child’s life. This should include income (before taxes) from all sources, wages, rent from properties, social security, disability and/or veteran’s benefits, unemployment benefits, workman’s compensation, help from relatives (including child payments and alimony) and so on.	X	Family characteristics
Parent education level	Survey	What is the highest degree you earned? [Less than high school, High school diploma or equivalent, Associate degree, Bachelor’s degree, Master’s degree, Doctorate/Professional, Other]		Family characteristics
Parent marital status	Survey	Please describe your current marital status? [Never married, Married, Not married but living with partner, Widowed, Divorced, Separated]		Family characteristics
Number of living children	Survey	How many other children do you have?		Family characteristics
Religion	Survey	Please indicate the religious tradition that best describes you [Protestant, Roman Catholic, Jewish, Eastern Orthodox, Hindu, Buddhist, Muslim, Other, None]		Family characteristics
Child gender	Chart review
Age at death	Chart review
Child race	Chart review
Duration of illness	Survey	Calculated: When did your child die? less When was your child diagnosed with this illness/condition?	X	Information about the child and their LT-CCC
Insurance type	Chart review
Primary LT-CCC type	Chart review
Technology dependence	Chart review
Hospital admissions	Chart review
ICU admissions	Chart review
Hospital length of stay	Chart review
Palliative care involvement	Survey	Was there involvement of a palliative care or the pediatric advance care team (PACT) during your child’s illness? [Yes, No]	X	Patient and family experience at EOL and time of death
Do Not Resuscitate orders (DNR)	Survey	Did you decide that your child should have a DNR order (that is, that life sustaining treatments should not be undertaken) at any time during your child’s illness? [Yes, No]		Patient and family experience at EOL and time of death
Intensive life sustaining therapies in last two days of life	Survey	Were any life sustaining treatments, such as placing a tube in his/her airway, compressing his/her chest, or shocking his/her heart undertaken during the last two days of life? [Yes, No]	X	Patient and family experience at EOL and time of death
Location of death	Survey	Where did your child die? [The hospital at where the care was primarily provided (Intensive Care Unit), The hospital at where the care was primarily provided (Inpatient ward), The hospital at where the care was primarily provided (Outpatient Clinic), The hospital at where the care was primarily provided (ED), A hospital that was not where care was primarily provided but where you child was known as a patient, A hospital where your child was not known as a patient, At home, Other]		Patient and family experience at EOL and time of death
Mode of death	Chart review
Ability to plan location of death	Survey	Were you able to plan in advance the place where your child would be when s/he died? [Yes, No]		Patient and family experience at EOL and time of death