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Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions

Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions
Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions
Aim: our aims were to (1) describe the conceptual basis of popular generic instruments according to World Health Organization (WHO) definitions of functioning, disability, and health (FDH), and quality of life (QOL) with health-related quality of life (HRQOL) as a subcomponent of QOL; (2) map the instruments to the International Classification of Functioning, Disability and Health (ICF); and (3) provide information on how the analyzed instruments were used in the literature. This should enable users to make valid choices about which instruments have the desired content for a specific context or purpose.

Method: child health-based literature over a 5-year period was reviewed to find research employing health status and QOL/HRQOL instruments. WHO definitions of FDH and QOL were applied to each item of the 15 most used instruments to differentiate measures of FDH and QOL/HRQOL. The ICF was used to describe the health and health-related content (if any) in those instruments. Additional aspects of instrument use were extracted from these articles.

Results: many instruments that were used to measure QOL/HRQOL did not reflect WHO definitions of QOL. The ICF domains within instruments were highly variable with respect to whether body functions, activities and participation, or environment were emphasized.

Interpretation: there is inconsistency among researchers about how to measure HRQOL and QOL. Moreover, when an ICF content analysis is applied, there is variability among instruments in the health components included and emphasized. Reviewing content is important for matching instruments to their intended purpose
0012-1622
Fayed, Nora
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De Camargo, Olaf Kraus
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Kerr, Elizabeth
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Rosenbaum, Peter
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Dubey, Ankita
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Bostan, Cristina
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Faulhaber, Markus
ccbd9272-4c1c-48d0-93e0-fa728c45d9b8
Raina, Parminder
fc64ffc1-ecfc-424f-9235-e1723308261c
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e
Fayed, Nora
ad6f08cd-6389-4c62-a084-7b9085d4392f
De Camargo, Olaf Kraus
1e4eee35-6551-4a9f-894d-7bd4f6d50b9b
Kerr, Elizabeth
af6ff960-b303-4549-9924-8e5b9cdd4c78
Rosenbaum, Peter
7d37a83e-28f0-48eb-a882-cbfc8a91e874
Dubey, Ankita
83a5f9b2-fc92-4f67-b14f-b6e1678ef171
Bostan, Cristina
5c1ff24c-126f-4fb3-9406-fe7267a32510
Faulhaber, Markus
ccbd9272-4c1c-48d0-93e0-fa728c45d9b8
Raina, Parminder
fc64ffc1-ecfc-424f-9235-e1723308261c
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e

Fayed, Nora, De Camargo, Olaf Kraus, Kerr, Elizabeth, Rosenbaum, Peter, Dubey, Ankita, Bostan, Cristina, Faulhaber, Markus, Raina, Parminder and Cieza, Alarcos (2012) Generic patient-reported outcomes in child health research: a review of conceptual content using World Health Organization definitions. Developmental Medicine & Child Neurology. (doi:10.1111/j.1469-8749.2012.04393.x). (PMID:22913566)

Record type: Article

Abstract

Aim: our aims were to (1) describe the conceptual basis of popular generic instruments according to World Health Organization (WHO) definitions of functioning, disability, and health (FDH), and quality of life (QOL) with health-related quality of life (HRQOL) as a subcomponent of QOL; (2) map the instruments to the International Classification of Functioning, Disability and Health (ICF); and (3) provide information on how the analyzed instruments were used in the literature. This should enable users to make valid choices about which instruments have the desired content for a specific context or purpose.

Method: child health-based literature over a 5-year period was reviewed to find research employing health status and QOL/HRQOL instruments. WHO definitions of FDH and QOL were applied to each item of the 15 most used instruments to differentiate measures of FDH and QOL/HRQOL. The ICF was used to describe the health and health-related content (if any) in those instruments. Additional aspects of instrument use were extracted from these articles.

Results: many instruments that were used to measure QOL/HRQOL did not reflect WHO definitions of QOL. The ICF domains within instruments were highly variable with respect to whether body functions, activities and participation, or environment were emphasized.

Interpretation: there is inconsistency among researchers about how to measure HRQOL and QOL. Moreover, when an ICF content analysis is applied, there is variability among instruments in the health components included and emphasized. Reviewing content is important for matching instruments to their intended purpose

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More information

e-pub ahead of print date: 22 August 2012
Organisations: Faculty of Social, Human and Mathematical Sciences

Identifiers

Local EPrints ID: 342546
URI: http://eprints.soton.ac.uk/id/eprint/342546
ISSN: 0012-1622
PURE UUID: 1bd9638e-2744-405d-83e9-83732cac29b4

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Date deposited: 06 Sep 2012 08:53
Last modified: 14 Mar 2024 11:51

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Contributors

Author: Nora Fayed
Author: Olaf Kraus De Camargo
Author: Elizabeth Kerr
Author: Peter Rosenbaum
Author: Ankita Dubey
Author: Cristina Bostan
Author: Markus Faulhaber
Author: Parminder Raina
Author: Alarcos Cieza

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