Background: There is increasing recognition of the importance of obtaining children’s reports of their health, but significant challenges must be overcome to do so in a systematic, population-based manner.
Objective: The objective of this study was to present the initial tests of the Child Report Form of the Child Health and Illness Profile–Child Edition (CHIP-CE/CRF), a self-report health status instrument for children 6 to 11 years old.
Methods: Three studies iteratively evaluated revisions of the CHIP-CE/CRF in 4 geographic locations in the United States. Children (N = 1708) whose families represent the low to middle socioeconomic strata and predominant U.S. racial/ethnic groups were involved.
Results: The final CHIP-CE/CRF includes 5 domains: Satisfaction (with self and health), Comfort (emotional and physical symptoms and limitations), Resilience (positive activities that promote health), Risk Avoidance (risky behaviors that influence future health), and Achievement (of social expectations in school and with peers). The internal consistency and test–retest reliability of the domains are good to excellent, with a definite age gradient such that younger children’s responses are less reliable although still acceptable. Validity is supported through criterion and construct validity tests and structural analyses. Standard scores (mean, 50; standard deviation, 10) were established.
Conclusions: Health status can be reliably and validly assessed directly from children 6 to 11 years old on the CHIP-CE/CRF. In combination with the CHIP-AE, self-reported health status can now be obtained from youth 6 to 18 years old using a consistent conceptual framework. This can greatly improve the precision and comparability of health assessments of youth, enhancing the validity of outcome research and longitudinal studies across childhood and adolescence.
The scientific methods that allow children to report on their own health are just being developed, but obtaining children’s reports of their health and health-related behavior is becoming recognized as critical for understanding trajectories of health and illness and issues such as why children with special health care needs might not follow medical regimens. Additionally, the limited validity of proxy reports, 1–4 the likelihood that parents underreport their child’s emotional problems, 5 and the value of having more than one respondent describe a child’s health 6 all contribute to the need for instruments to obtain child self-reports of health and health-related quality of life (HRQoL). As discussed by Rebok and colleagues, 7 limited but persuasive evidence existed that elementary school-aged children could report on some aspects of their health when the development of the Child Health and Illness Profile-Child Edition (CHIP-CE) began in 1995.
At that time, there were no self-report health status instruments for children, and only one was available for adolescents, the CHIP-AE, developed by our group. 8 This was not surprising given the obstacles to obtaining reports from children themselves, 9,10 the insufficient knowledge about what constitutes age-appropriate functioning 11,12 and the limited understanding of the accuracy and value of information obtained from children. 5,13,14
Since that time, much progress has been made. Health status and HRQoL instruments are available for older children, 15 and even young children, to report on their own health, 16,17 and work is proceeding in the European Union to develop a population measure of child health with country-specific norms. 18
In the first phase of CHIP-CE Child Report Form (CRF) development, which has been previously reported, cognitive interviews with elementary school-aged children demonstrated that it was feasible for children to report on their own health using an illustrated, visually informative format with size-graduated Likert-type response options for each simply worded item. 7 A dual, visual and oral, administration was needed for the youngest children (6–7 years old). 19
A subsequent phase of formative research involved a full validation and 1-week retest of the initial 100-item draft of the CHIP-CE/CRF with 248 children and their mothers/female guardians in the greater Baltimore, Maryland, area. Parents and children from a range of socioeconomic and racial backgrounds were recruited from 6 private and public pediatric settings. In individual sessions, children 8 to 11 years old who could read at a third-grade level completed the CHIP on their own. Children 6 and 7 years old, and older children who could not read at a third-grade level, completed it with an interviewer. The results of this study provided the basis for a 98-item instrument that had preliminary feasibility, acceptability, and content.
This article presents the subsequent iterative process of testing and revising the “Child CHIP,” and developing feasible methods of administration in medical and school settings. The preceding manuscript in this volume describes the development of the CHIP-CE/PRF, the Parent Report Form, which took place concurrently. 20