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.