Participants and settings
The sample contains composite child self-report and parent proxy-report age subgroup data on 8,591 children ages 5 to 16 years from the PedsQL™ 4.0 Generic Core Scales DatabaseSM (previously published data, n = 8,086, 94.1%; unpublished data, n = 505, 5.9%). Participants were recruited from general pediatric clinics, subspecialty clinics, and hospitals in which children were being seen for well-child checks, mild acute illness, or chronic illness care (n = 2,603, 30.3%), and from a State Children's Health Insurance Program (SCHIP) in California (n = 5,988, 69.7%). Participants recruited from general pediatric clinics, subspecialty clinics, and hospitals were assessed in-person or by telephone. For in-person mode of administration, research assistants obtained written parental informed consent and child assent. Paper-and-pencil questionnaires were self-administered for parents and for children ages 8 to 16 and interview administered for children ages 5 to 7 and in situations in which the child was unable to read or write as a consequence of either physical or cognitive impairment. For telephone administration, parents of children ages 5 to 16 were called by a research assistant who explained the study, and obtained verbal parental informed consent and child assent. The research assistant verbally administered the PedsQL™ 4.0 individually to the parent and their child. If the child was not home at the time of the initial call, the research assistant arranged for a call at another time. These research protocols were approved by the Institutional Review Board at Children's Hospital and Health Center, San Diego and other appropriate local Institutional Review Boards.
Participants recruited from the State Children's Health Insurance Program (SCHIP) were assessed via statewide mailing. PedsQL™ 4.0 paper-and-pencil surveys were mailed separately for each of the months of February and March 2001 to families with children ages 5–16 years throughout the State of California who were all new enrollees in SCHIP. Parents and children ages 8–16 were instructed to complete the survey separately, while parents of children ages 5–7 were instructed to assist their child in completing the questionnaire after completing the proxy-report. A reminder postcard followed the initial mailing, with a second survey mailed to nonrespondents. Nonrespondents to the second survey received a telephone reminder. Given that this project was conducted for program evaluation to comply with California Insurance Code 12693.92 (b), and not specifically research purposes, parents and children did not complete informed consent forms [38
]. This protocol of analyzing existing deidentified data was approved by the Institutional Review Board at Children's Hospital and Health Center, San Diego.
For all forms combined (N = 8,591), the number of children within each age subgroup is as follows: 757 five-year-olds (8.8%), 932 six-year-olds (10.8%), 891 seven-year-olds (10.4%), 882 eight-year-olds (10.3%), 841 nine-year-olds (9.8%), 841 ten-year-olds (9.8%), 683 eleven-year-olds (7.9%), 683 twelve-year-olds (7.9%), 614 thirteen-year-olds (7.1%), 572 fourteen-year-olds (6.7%), 563 fifteen-year-olds (6.6%), and 332 sixteen-year-olds (3.9%). The sample contains 4,391 boys (51.1%), 4,185 girls (48.7%), and 15 missing (0.2%). The sample is heterogeneous with respect to race/ethnicity with 4,403 Hispanics (51.3%), 1,995 White non-Hispanics (23.2%), 759 Asian or Pacific Islanders (8.8%), 405 Black non-Hispanics (4.7%), 41 American Indians or Alaskan Natives (0.5%), 115 other (1.3%), and 873 missing (10.2%). Child surveys were completed in English (n = 4,859, 56.6%), Spanish (n = 3,377, 39.3%), Chinese (n = 184, 2.1%), Korean (n = 93, 1.1%), and Vietnamese (n = 46, 0.5%; missing = 32, 0.4%). Response equivalence has been previously demonstrated across language for the PedsQL™ by examining the percent missing data, floor and ceiling effects, and scale internal consistency across language, as well as across mode of administration [37
The sample included healthy children, who were assessed either in physicians' offices during well-child checks and/or whose parents did not report the presence of a chronic health condition (n = 5,491, 63.9%), acutely ill children, whose parents did not report the presence of a chronic health condition, but who were assessed at one of the pediatric clinics or hospitals (n = 142, 1.7%), chronically ill children, whose parents reported the presence of a chronic health condition (i.e., a physical or mental health condition that has lasted or is expected to last at least 6 months and interferes with the child's activities) and/or were identified through their medical records as having a chronic health condition (n = 2,627, 30.6%), and 331 missing (3.9%). Within each age subgroup, the number of healthy and chronically ill children is as follows: 561 healthy (74.1%) and 155 chronically ill (20.5%) five-year-olds, 717 healthy (76.9%) and 161 chronically ill (17.3%) six-year-olds, 646 healthy (72.5%) and 185 chronically ill (20.8%) seven-year-olds, 590 healthy (66.9%) and 252 chronically ill (28.6%) eight-year-olds, 558 healthy (66.3%) and 233 chronically ill (27.7%) nine-year-olds, 545 healthy (64.8%) and 256 chronically ill (30.4%) ten-year-olds, 404 healthy (59.2%) and 257 chronically ill (37.6%) eleven-year-olds, 415 healthy (60.8%) and 225 chronically ill (32.9%) twelve-year-olds, 326 healthy (53.1%) and 258 chronically ill (42.0%) thirteen-year-olds, 301 healthy (52.6%) and 238 chronically ill (41.6%) fourteen-year-olds, 289 healthy (51.3%) and 230 chronically ill (40.9%) fifteen-year-olds, and 139 healthy (41.9%) and 177 chronically ill (53.3%) sixteen-year-olds. The chronically ill sample (n = 2,627) is heterogeneous in terms of diagnoses with 374 children diagnosed with asthma (14.2%), 358 with cancer (13.6%), 291 with diabetes (11.1%), 269 with a gastrointestinal condition (10.2%), 268 with a rheumatic condition (10.2%), 199 with a cardiac condition (7.6%), 103 diagnosed as obese (3.9%), 103 with sickle cell anemia (3.9%), 78 with ADHD (3.0%), 72 with renal disease (2.7%), 71 with cerebral palsy (2.7%), 45 with mental health conditions (1.7%), and 396 with other chronic conditions (15.1%).