JeanHee Moon

Conceptual and methodological advances in child-reported outcomes measurement.

Increasingly, clinical, pharmaceutical and translational research studies use patient-reported outcomes as primary and secondary end points. Obtaining this type of information from children themselves is now possible, but effective assessment requires developmentally sensitive conceptual models of child health and an appreciation for the rapid change in children’s cognitive capacities. To overcome these barriers, outcomes researchers have capitalized on innovations in modern measurement theory, qualitative methods for instrument development and new computerized technologies to create reliable and valid methods for obtaining self-reported health data among 8–17-year-old children. This article provides a developmentally focused framework for selecting child-report health assessment instruments. Several generic health-related quality of life instruments and the assessment tools developed by the NIH-sponsored Patient-Reported Outcome Measurement Information System network are discussed to exemplify advances in the measurement of children’s self-reported health, illness, wellbeing and quality of life.

Subjective well-being measures for children were developed within the PROMIS project: presentation of first results

OBJECTIVES The aims of this Patient Reported Outcome Measurement Information System (PROMIS) study were to (1) conceptualize childrens subjective well-being (SWB) and (2) produce item pools with excellent content validity for calibration and use in computerized adaptive testings (CATs). STUDY DESIGN AND SETTING Childrens SWB was defined through semistructured interviews with experts, children (aged 8-17 years), parents, and a systematic literature review to identify item concepts comprehensively covering the full spectrum of SWB. Item concepts were transformed into item expressions and evaluated for comprehensibility using cognitive interviews, reading level analysis, and translatability review. RESULTS Childrens SWB comprises affective (positive affect) and global evaluation components (life satisfaction). Input from experts, children, parents, and the literature indicated that the eudaimonic dimension of SWB-that is, a sense of meaning and purpose-could be evaluated. Item pools for life satisfaction (56 items), positive affect (53 items), and meaning and purpose (55 items) were produced. Small differences in comprehensibility of some items were observed between children and adolescents. CONCLUSION The SWB measures for children are the first to assess both the hedonic and eudaimonic aspects of SWB. Both children and youth seem to understand the concepts of a meaningful life, optimism, and goal orientation.

Continuity of Public Insurance Coverage: A Systematic Review of the Literature

Publicly financed insurance programs are tasked with maintaining coverage for eligible children, but published measures to assess coverage have not been evaluated. Therefore, we sought to identify and categorize measures of health insurance continuity for children and adolescents. We conducted a systematic review of Medline and HealthStar databases, review of reference lists of eligible articles, and contact with experts. We categorized measures into 8 domains based on a conceptual framework. We identified 147 measures from 84 eligible articles. Most measures evaluated the following domains: always insured (41%), repeatedly uninsured (36%), and transition out of coverage (29%), while fewer assessed single gap in coverage, always uninsured, transition into coverage, change in coverage, and eligibility. Only 18% of measures assessed associations between continuity of coverage and child and adolescent health outcomes. These results suggest that a number of measures of continuity of coverage exist, but few measures have assessed impact on outcomes.

Patient Reported Outcomes as Indicators of Pediatric Health Care Quality

Health care reform has increased demand for pediatric health care quality evaluations, particularly those that assess the impact of care on patient and population health outcomes. Many of todays most common childhood conditions are characterized by symptoms, behaviors, and functional limitations that are best assessed as patient reported outcomes (PROs). Although they remain greatly underutilized, PROs have the potential to improve pediatric health care quality assessment at the point of care and through system-level performance evaluations. The functions, benefits, and challenges of these PRO applications are described and illustrated in case examples. Although challenges remain, numerous methodological and technical innovations facilitate the use of PROs as health care quality metrics. These include advances in PRO measure development methodologies, the integration of PRO measures into electronic health records, and developing consensus among providers that PROs provide valuable information that can be used to enhance patient care. Although additional work is needed to address remaining methodological challenges, pediatric PROs are increasingly recognized as valuable indicators of health care quality in the clinical environment and as measures of organization- and provider-level performance.

Medicaid and CHIP Retention Among Children in 12 States

OBJECTIVE Though stable insurance is important to support optimal child health, the reproducibility of metrics to assess child health insurance retention at the state and county level has not been examined. We sought to determine reproducibility of public insurance retention rates for children using 3 different metrics at the state and county level. METHODS Public health insurance retention for children was assessed using 3 different metrics calculated from 2006-2009 Medicaid Analytic Extract data from 12 selected states. The metrics were: 1) Duration: a prospective metric that quantifies the number of newly enrolled children continuously enrolled in public insurance 6, 12, and 18 months after initial enrollment during a selected period; (2) Infant Duration: assesses Duration only among infants born during a selected period; (3) Coverage: a prospective metric that quantifies the average percentage of time a selected population is enrolled over an 18-month interval. Reproducibility of the metrics was assessed using a range of sample sizes with resampling and determining changes in relative rankings of states/counties by retention rate. RESULTS All 3 metrics demonstrated reproducible estimates at the state level with sample sizes of 2000, 5000, and 10,000. Reproducibility of relative rankings for child health insurance retention of counties within states were sensitive to county child population size and the amount of variability in retention rates within the county and at the state level. CONCLUSIONS As health care reform unfolds, the complete set of these 3 reproducible metrics can be used to evaluate multipronged and multilevel strategies to retain eligible children in public health insurance.

Correction to: Translation and cross-cultural adaptation of eight pediatric PROMIS® item banks into Spanish and German

In the original publication of the article, two of the author names “L. A. Schröder, F. Metzner” and email address of the authors “J. Devine, J. Moon, A. C. Haller” were missed out. The correct author group with affiliations are provided in this correction.