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      Development of six PROMIS pediatrics proxy-report item banks

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          Abstract

          Background

          Pediatric self-report should be considered the standard for measuring patient reported outcomes (PRO) among children. However, circumstances exist when the child is too young, cognitively impaired, or too ill to complete a PRO instrument and a proxy-report is needed. This paper describes the development process including the proxy cognitive interviews and large-field-test survey methods and sample characteristics employed to produce item parameters for the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric proxy-report item banks.

          Methods

          The PROMIS pediatric self-report items were converted into proxy-report items before undergoing cognitive interviews. These items covered six domains (physical function, emotional distress, social peer relationships, fatigue, pain interference, and asthma impact). Caregivers (n = 25) of children ages of 5 and 17 years provided qualitative feedback on proxy-report items to assess any major issues with these items. From May 2008 to March 2009, the large-scale survey enrolled children ages 8-17 years to complete the self-report version and caregivers to complete the proxy-report version of the survey (n = 1548 dyads). Caregivers of children ages 5 to 7 years completed the proxy report survey (n = 432). In addition, caregivers completed other proxy instruments, PedsQL™ 4.0 Generic Core Scales Parent Proxy-Report version, PedsQL™ Asthma Module Parent Proxy-Report version, and KIDSCREEN Parent-Proxy-52.

          Results

          Item content was well understood by proxies and did not require item revisions but some proxies clearly noted that determining an answer on behalf of their child was difficult for some items. Dyads and caregivers of children ages 5-17 years old were enrolled in the large-scale testing. The majority were female (85%), married (70%), Caucasian (64%) and had at least a high school education (94%). Approximately 50% had children with a chronic health condition, primarily asthma, which was diagnosed or treated within 6 months prior to the

          interview. The PROMIS proxy sample scored similar or better on the other proxy instruments compared to normative samples.

          Conclusions

          The initial calibration data was provided by a diverse set of caregivers of children with a variety of common chronic illnesses and racial/ethnic backgrounds. The PROMIS pediatric proxy-report item banks include physical function (mobility n = 23; upper extremity n = 29), emotional distress (anxiety n = 15; depressive symptoms n = 14; anger n = 5), social peer relationships (n = 15), fatigue (n = 34), pain interference (n = 13), and asthma impact (n = 17).

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          Most cited references19

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          Child/adolescent behavioral and emotional problems: implications of cross-informant correlations for situational specificity.

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            The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity.

            The application of health-related quality of life (HRQOL) as a pediatric population health measure may facilitate risk assessment and resource allocation, the tracking of community health, the identification of health disparities, and the determination of health outcomes from interventions and policy decisions. To determine the feasibility, reliability, and validity of the 23-item PedsQL 4.0 (Pediatric Quality of Life Inventory) Generic Core Scales as a measure of pediatric population health for children and adolescents. Mail survey in February and March 2001 to 20 031 families with children ages 2-16 years throughout the State of California encompassing all new enrollees in the State's Children's Health Insurance Program (SCHIP) for those months and targeted language groups. The PedsQL 4.0 Generic Core Scales (Physical, Emotional, Social, School Functioning) were completed by 10 241 families through a statewide mail survey to evaluate the HRQOL of new enrollees in SCHIP. The PedsQL 4.0 evidenced minimal missing responses, achieved excellent reliability for the Total Scale Score (alpha =.89 child;.92 parent report), and distinguished between healthy children and children with chronic health conditions. The PedsQL 4.0 was also related to indicators of health care access, days missed from school, days sick in bed or too ill to play, and days needing care. The results demonstrate the feasibility, reliability, and validity of the PedsQL 4.0 as a pediatric population health outcome. Measuring pediatric HRQOL may be a way to evaluate the health outcomes of SCHIP.
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              Parent-child agreement across child health-related quality of life instruments: a review of the literature.

              To systematically review the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent-child agreement. Literature searches used to identify studies which evaluated parent-child agreement for child HRQL measures. Nineteen studies were identified, including four HRQL instruments. The Pediatric Quality of Life Inventory (PedsQL) was most commonly used. Differences in parent-child agreement were noted between domains for different measures. The impact of child and parent characteristics were not consistently considered; however parents of children in a nonclinical sample tended to report higher child HRQL scores than children themselves, while parents of children with health conditions tended to underestimate child HRQL. Despite increasing numbers of studies considering children's HRQL, information about variables contributing to parent-child agreement levels remains limited. Authors need to consistently provide evidence for reliability and validity of measures, and design studies to systematically investigate variables that impact on levels of parent-child agreement.
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                Author and article information

                Journal
                Health Qual Life Outcomes
                Health Qual Life Outcomes
                Health and Quality of Life Outcomes
                BioMed Central
                1477-7525
                2012
                22 February 2012
                : 10
                : 22
                Affiliations
                [1 ]Department of Epidemiology, University of North Carolina at Chapel Hill, CB #7295 Chapel Hill, NC, USA 27599
                [2 ]Department of Psychology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
                [3 ]Department of Pediatrics, Division of Rheumatology, James M. Anderson Center for Health Systems Excellence, Cincinnati children's Hospital and Medical Center, Cincinnati, OH, USA
                [4 ]Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL, USA
                [5 ]Center on Outcomes Research in Rehabilitation, University of Washington, Seattle, WA, USA
                [6 ]Department of Pediatrics, College of Medicine, Department of Landscape Architecture and Urban Planning, College of Architecture, Texas A&M University, College Station, Texas, USA
                [7 ]Division of General Medicine and Clinical Epidemiology and the Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
                [8 ]Cecil G. Sheps Center for Health Services Research, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA
                Article
                1477-7525-10-22
                10.1186/1477-7525-10-22
                3312870
                22357192
                3f8da615-48a3-4167-a973-2037c5947dd3
                Copyright ©2012 Irwin et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 11 July 2011
                : 22 February 2012
                Categories
                Research

                Health & Social care
                pro,promis,scale development,hrqol,parent proxy,pediatrics
                Health & Social care
                pro, promis, scale development, hrqol, parent proxy, pediatrics

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