Training the next generation of learning health system scientists.

Introduction: The learning health system (LHS) aligns science, informatics, incentives, stakeholders, and culture for continuous improvement and innovation. The Agency for Healthcare Research and Quality and the Patient-Centered Outcomes Research Institute designed a K12 initiative to grow the number of LHS scientists. We describe approaches developed by 11 funded centers of excellence (COEs) to promote partnerships between scholars and health system leaders and to provide mentored research training.

Development of patient-reported outcome measures of children's oral health aesthetics.

Objectives: To develop and evaluate the psychometric properties of child- and parent-proxy measures of oral health aesthetics.

Methods: Items that describe children's perceptions of their oral attractiveness and its impact on social, emotional, and behavioural functioning were developed based on a systematic review of existing measures, clinician feedback (n = 13) and child semi-structured interviews (n = 27). The tools' content validity was assessed in cognitive interviews with 21 children.

Assessing Children's Eudaimonic Well-Being: The PROMIS Pediatric Meaning and Purpose Item Banks.

Objective: To describe the development of the Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric Meaning and Purpose item banks, child-report and parent-proxy editions.

Methods: Data were collected from two samples. The first comprised 1,895 children (8-17 years old) and 927 parents of children 5-17 years old recruited from an Internet panel, medical clinics, and schools.

Development and Evaluation of the PROMIS Pediatric Positive Affect Item Bank, Child-Report and Parent-Proxy Editions.

Objective: The purpose of this study is to describe the psychometric evaluation and item response theory calibration of the PROMIS Pediatric Positive Affect item bank, child-report and parent-proxy editions.

Methods: The initial item pool comprising 53 items, previously developed using qualitative methods, was administered to 1,874 children 8-17 years old and 909 parents of children 5-17 years old. Analyses included descriptive statistics, reliability, factor analysis, differential item functioning, and construct validity.

Evaluation of the PROMIS pediatric global health scale (PGH-7) in children with asthma.

Objective: To evaluate the reliability and validity of the PROMIS Pediatric Global Health scale, a 7-item measure of perceived physical, mental, and social health, in children with asthma.

Methods: From February 2014 to February 2015, convenience samples of 8-17 year-old children (n = 182) and parents of 5-17 year-old children (n = 328) visiting an emergency department for treatment of asthma were enrolled. The Asthma Control Test was used to characterize children as controlled versus not controlled, and the PROMIS Asthma Impact Scale was used to assess asthma symptoms' impact on functional status.

Development and psychometric evaluation of the PROMIS Pediatric Life Satisfaction item banks, child-report, and parent-proxy editions.

Purpose: To describe the psychometric evaluation and item response theory calibration of the PROMIS Pediatric Life Satisfaction item banks, child-report, and parent-proxy editions.

Methods: A pool of 55 life satisfaction items was administered to 1992 children 8-17 years old and 964 parents of children 5-17 years old. Analyses included descriptive statistics, reliability, factor analysis, differential item functioning, and assessment of construct validity.

Concurrent validity of the PROMIS® pediatric global health measure.

Purpose: To evaluate the concurrent validity of the PROMIS Pediatric Global Health measure (PGH-7), child-report and parent-proxy versions.

Methods: Surveys were administered via home computer on two separate occasions (December, 2011 and August/September, 2012) to a convenience sample of 4636 children 8-17 years old and 2609 parents who participated in a national Internet panel. Data analysis included: (1) evaluations of differences in PGH-7 scores between groups defined by sociodemographics, clinical characteristics, and access to health care; (2) associations with 15 PROMIS pediatric measures; and (3) correlations with two health-related quality-of-life instruments, the KIDSCREEN-10 and PedsQL-15.

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.

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 today's 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.

Developing measures for pediatric quality: methods and experiences of the CHIPRA pediatric quality measures program grantees.

Background: Monitoring quality is an important way of understanding how the health care system is serving children and families. The Children's Health Insurance Program Reauthorization Act of 2009 (CHIPRA) Pediatric Quality Measures Program (PQMP) funded efforts to develop and enhance measures to assess care for children and adolescents. We describe the processes used by the PQMP grantees to develop measures to assess the health care of children and adolescents in Medicaid and the Children's Health Insurance Program.

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 children's 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: Children's 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.

Development of the PROMIS ® pediatric global health (PGH-7) measure.

Purpose: To develop a practical, efficient, and reliable pediatric global health (PGH) measure that would be useful for clinical, quality improvement, and research applications.

Methods: Using the Patient Reported Outcome Measurement Information System (PROMIS) mixed-methods approach for item bank development, we identified an item pool that was well understood by children as young as age 8 years and tested its psychometric properties in an internet panel sample of 3,635 children 8-17 years old and 1,807 parents of children 5-17 years old.

Results: The final version of the PGH measure included 7 items assessing general, physical, mental, and social health.

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.

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.