Study: Only 2 of 20 Tested Instruments Recommended for Measuring the Quality of Life of Children With a Disability

KIDSCREEN and KINDL Meet Criteria

Lawrenceville, NJ, USA—December 18, 2018—Value in Health, the official journal of ISPOR—the professional society for health economics and outcomes research, announced today the publication of new research finding that of 20 quality of life (QoL) instruments tested, only two (KIDSCREEN and KINDL) are recommended for service providers to measure the QoL of children with a disability. The report, “A Rights-Based Approach for Service Providers to Measure the Quality of Life of Children with a Disability,” was published in the December 2018 issue of Value in Health.

Researchers conducted a review of systematic reviews to identify generic QoL instruments for children and adolescents followed by an appraisal using newly developed criteria. Twenty generic QoL instruments for children were identified to undergo further review. Only 2 of the 20 instruments were recommended for service providers to measure the QoL of children with a disability: KIDSCREEN and KINDL. These instruments follow a rights-based approach and are likely to be feasible for regular use by service providers as part of their evaluation and quality assurance and to inform clinical practice. Further, they measure areas of life important to children and their parents, are simple and quick to complete, are low cost, and have emerging evidence of sensitivity to change. They assess physical and psychological wellbeing, including self-esteem, moods and emotions, family relationships and autonomy, and social environments, including schooling.

“This review identified 2 important issues,” said author Elise Davis, PhD, of Mind Australia and the University of Melbourne, Melbourne, Victoria, Australia. “First, although a generic quality-of-life instrument is necessary for service providers supporting children with varied disabilities, it is important that the instrument captures the issues that have been identified to be important to children with a disability by seeking their perspective, particularly around family, social, and wellbeing domains. Second, many of the generic quality-of-life instruments included within recent systematic reviews focus on functioning rather than wellbeing and thus may not capture the quality of life of children with a disability given that functional limitations do not always correlate with lower quality of life.”

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 ABOUT ISPOR
ISPOR, the professional society for health economics and outcomes research (HEOR), is an international, multistakeholder, nonprofit dedicated to advancing HEOR excellence to improve decision making for health globally. The Society is the leading source for scientific conferences, peer-reviewed and MEDLINE®-indexed publications, good practices guidance, education, collaboration, and tools/resources in the field.
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ABOUT VALUE IN HEALTH
Value in Health (ISSN 1098-3015) is an international, indexed journal that publishes original research and health policy articles that advance the field of health economics and outcomes research to help healthcare leaders make evidence-based decisions. The journal’s 2017 impact factor score is 5.494. Value in Health is ranked 3rd among 94 journals in healthcare sciences and services, 3rd among 79 journals in health policy and services, and 6th among 353 journals in economics. Value in Health is a monthly publication that circulates to more than 10,000 readers around the world.
Web: www.ispor.org/publications/journals/value-in-health | Twitter: www.twitter.com/ISPORJournals (@ISPORjournals)

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