Background.Pediatric patients' self-report of health-related quality of life (HRQOL) has emerged as an important patient-based health outcome. A practical, validated generic measure of HRQOL facilitates assessing risk, tracking health status, and measuring treatment outcomes in pediatric populations

The PedsQL: measurement model for the pediatric quality of life inventory.

Measuring quality of life

Scope of the report This report is concerned with the evaluation of measures broadly designed to measure quality of life (QoL) in children and adolescents, either by self-report or proxy raters. Four research questions were identified: (1) To what extent are adult measures used in the evaluation of healthcare interventions in children? (2) How appropriate are adult measures for use with children? (3) To what extent do child self-reports correspond with assessments made by parents and carers? (4) How feasible and reliable are proxy measures of QoL in different disease contexts? Objectives (1) To review the state of the art with regard to measurement of QoL for children. (2) To make recommendations regarding the value of currently available measures for different purposes. (3) To identify further research needs. Method Electronic databases were searched for the period 1980-July 1999 for articles relating to measures of QoL, health status or well-being in children (under 18 years) with chronic disease. Handsearching of relevant journals and cross-referencing with reference lists in identified articles was also carried out. Key workers in the field were contacted for additional information, and the Internet was searched for relevant websites. Results Forty-three measures were identified (19 generic and 24 disease-specific). Sixteen measures allowed for completion by children and parent/caregiver; seven only allowed for completion by a proxy, and the remainder (n = 17) allowed only for child completion. The measures were described as QoL (n = 30), health status, (n = 2), perception of illness (n = 1), life satisfaction (n = 1) and quality of well-being (n = 1). RESULTS - TO WHAT EXTENT ARE ADULT MEASURES USED IN THE EVALUATION OF HEALTHCARE INTERVENTIONS IN CHILDREN?: Three studies were identified where adult measures were used with very few changes made for children. In 11 studies involving nine separate measures of QoL, adult measures were used as a model for work with children. RESULTS - HOW APPROPRIATE ARE ADULT MEASURES FOR USE WITH CHILDREN?: Adult measures may fail to tap the specific aspects of QoL that are important to the child. Measures based on adult work impose considerable response burden for children, in terms of length, reading skills and response scale. Wording and format of adult measures may need to be modified to account for children's cognitive and language skills. More basic research is needed to determine the level of response burden that children of different ages can manage. Assessments of difficulty (e.g. reading age) need to be routinely included with information about new measures. RESULTS - TO WHAT EXTENT DO CHILD SELF-REPORTS CORRESPOND WITH ASSESSMENTS MADE BY PARENTS AND CARERS?: Fourteen studies were identified in which concor-dance between child and parent was investigated, often as part of the development of a new measure. There was some evidence for greater concordance between child and parent for physical functioning compared with social and emotional domains, but greater heterogeneity in the latter measures may contribute to inconsistent results. There was no simple relationship between concordance and moderating variables such as age, gender and illness, but this conclusion was addressed only very rarely. RESULTS - HOW FEASIBLE AND RELIABLE ARE PROXY MEASURES OF QOL IN DIFFERENT DISEASE CONTEXTS?: Only five papers fulfilled the review criteria. Evaluation is difficult because authors fail to justify their choice of measures, and do not report critical information such as completion rates or missing data. Use of existing measures can potentially eliminate the time and expense required to develop a comprehensive measure of QoL, but a full battery of standardised tests may be expensive in terms of time for administration and scoring. In addition, battery measures tend to be lengthy and therefore demanding for sick patients. They are not recommended for work with children. RECOMMENDATIONS FOR RESEARCH - MINIMUM CRITERIA FOR NEW MEASURES: A set of procedures needs to be established for the development of new measures. These need to draw on the experience gained in development of child and adult measures to date. Basic research to enhance understanding of how children interpret questions in QoL measures is recommended. We need to understand the differences in meaning of items between children and adults, and between children of different ages. Some attempt to develop measures for children of 6 years or more have been reported, and these should be further developed. (ABSTRACT TRUNCATED)

Quality-of-life measures in chronic diseases of childhood

Background
Many patients with several concurrent medical conditions (multimorbidity) are seen in the primary care setting. A thorough understanding of outcomes associated with multimorbidity would benefit primary care workers of all disciplines. The purpose of this systematic review was to clarify the relationship between the presence of multimorbidity and the quality of life (QOL) or health-related quality of life (HRQOL) of patients seen, or likely to be seen, in the primary care setting.

/pdf/multimorbidity-and-quality-of-life-in-primary-care-a-2zu5kououz.pdf

Multimorbidity and quality of life in primary care: a systematic review

Progress in the assessment of quality of life (QoL) measures for children and their value in clinical practice are considered. The most parsimonious approach to assessment includes modular assessment of generic and disease-specific QoL. Differences occur between child and parent proxy ratings, so it is recommended that ratings from multiple observers are made where possible. QoL measures may be of value in clinical practice, but the inadequate availability of the resources necessary to analyse results and provide the required support is a major barrier. Although the assessment of QoL in children remains challenging, its value is increasingly recognised by both researchers and clinicians.

https://adc.bmj.com/content/archdischild/77/4/347.full.pdf

This report describes the early stages in the development and testing of an instrument, known as the CHIP (Child Health and Illness Profile), for assessing the health of individuals aged 11 through 17 The purpose of the instrument is to assess health in epidemiologic surveys, to determine the existence of systematic differences in health in subpopulations (including the socioeconomically disadvantaged), and to provide a basis for assessing the impact of changes in health services or health policies An instrument consisting of six domains with 25 subdomains was developed based on the literature, the involvement of focus groups and expert panels, and pretesting in four groups of teenagers known to differ in their health The results of work with panels of experts suggest that the instrument has content validity Most domains and subdomains had acceptable reliability as measured by alpha coefficients Differences in the scores of individuals in the four groups were in the predicted directions, suggesting that the instrument also has construct validity Additional research is under way to establish other aspects of validity as well as reliability in school populations of adolescents as well as specific clinical settings

Adolescent health status measurement: development of the Child Health and Illness Profile.

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Adolescent health status measurement: development of the Child Health and Illness Profile.