Measures
Demographic Questionnaire. Family demographic characteristics
were provided by parents using a questionnaire that assessed factors
such as marital status, education, occupation, religious beliefs,
income, and number and age of children at enrollment (T1). A cumulative
sociodemographic score was created from the information collected in
this measure.
Perceived Stress Scale (PSS). This widely used 10-item instrument
assesses subjective experiences of psychological stress [2,17].
Mothers rated each item on a 4-point scale of how often each item was
true for them within the past month [2]. Internal consistency,
test-retest ability, and concurrent and predictive validity have all
been established [18]. Internal consistency in the current sample
was low, α =.55.
Responses to Stress Questionnaire- Pediatric Cancer Version
(RSQ-PC). The RSQ-PC is a 57-item measure that includes a list of 11
cancer-related stressors (e.g., missing school, frequent hospital or
clinic visits, changes in personal appearance) using a four-point scale
ranking items from “Not at all” to “Very” [19]. Mothers provided
proxy-report on their children. Prorated mean scores were calculated for
overall cancer-related stress. The RSQ-PC has been used extensively with
acceptable reliability and validity [20,21,22]. Internal consistency
in this sample was high, α =.92.
Parent–Adolescent Communication Scale (PACS). This questionnaire
includes 20-items rated 1-5 regarding the quality of general
communication between parents and their adolescents [23]. The
measure includes 2 subscales: (a) Open Family Communication and b)
Problems in Family Communication. A total communication score is
calculated by coding the open family communication subscale so that
higher scores indicate more openness, and reverse coding the problems in
family communication subscale so that higher scores indicate fewer
problems in parent–adolescent communication. The scales demonstrate
internal consistency and adequate 4-week test-retest reliability
[23]. Mother’s provided self-report of communication with their
adolescent. Internal consistency in the current sample was acceptable,α =.70.
Pediatric Quality of Life Inventory Version 4.0 (PedsQL). The
PedsQL 4.0 is an established measure of health-related quality of life
(HRQOL) and includes 23-items across four subscales: physical,
emotional, social, and school functioning [24]. Items are reverse
coded and linearly transformed to a scale of 0-100, with higher scores
indicating better HRQOL. Parents provided proxy-report of their child’s
QOL, and survivors provided self-report. One version was used for
children ages 8-12 years old, and another was used for children ages
13-18 years old. The PedsQL has been used extensively to evaluate the
HRQOL of children with chronic health problems [24]. The reliability
and validity of this instrument have been established in previous work
for youth aged 5-18 [25]. Internal consistencies in the current
sample were α= 0.89 for mother proxy-report, and α = 0.88
for child self-report, which are deemed good.
For the current manuscript, each measure was administered at enrollment,
except the Peds-QL, which was administered at 5-year follow up.