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Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions

Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions
Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions
Purpose. The impact of cancer on children can be assessed through various concepts including mental and physical health status and most significantly quality of life (QOL). It has been difficult to compare data collected through these instruments due to a lack of continuity or understanding of overlaps and gaps between them. To delineate the content of the most commonly used instruments in childhood cancer on an item-by-item basis, this study used standardized methods to link health information to the International Classification of Functioning, Disability, and Health (ICF) as well as World Health Organization (WHO) standard definitions of health and quality of life.

Method. MEDLINE, CINAHL, EMBASE, PsycINFO, Cancerlit, and Sociological Abstracts were searched from the inception of each database to June 15th, 2009 for health status and quality of life instruments. The six most common cancer-specific and generic instruments employed in primary research in childhood cancer were analyzed on an item-by-item basis by two content assessors specializing in ICF linking and WHO definitions of health and QOL, using a standardized iterative technique developed at the ICF Research Branch.

Results. We report the extent to which health status and QOL are represented in each instrument. Most measures emphasize a majority health status perspective according to WHO definitions of health. The generic instruments stress activities and participation domains over body functions or environment factors according to the ICF while cancer-specific instruments vary in their emphasis. Initial phase of coding agreement between assessors was in the substantial range (0.6–0.8 using Cohen’s kappa).

Conclusion. A comprehensive and systematic content analysis of the most commonly employed health status and QOL instruments was conducted for this review. Two criteria were described as follows: the perspectives of the instruments (i.e., health vs. QOL) and the health content (according to ICF components). No single instrument demonstrated an ideal balance of content characteristics according to these criteria, and thus, each must be considered carefully relative to one’s particular research or clinical evaluative purpose.
cancer, child, quality of life, health status, patient-reported outcomes, icf, world health organization
0962-9343
1247-1258
Fayed, Nora
ad6f08cd-6389-4c62-a084-7b9085d4392f
Schiariti, Vero
bb37ef12-ed85-4153-bce5-e445b9bed28d
Bostan, Cristina
5c1ff24c-126f-4fb3-9406-fe7267a32510
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e
Klassen, Anne
54c93f64-8c04-4f85-b623-a1d8871b91fe
Fayed, Nora
ad6f08cd-6389-4c62-a084-7b9085d4392f
Schiariti, Vero
bb37ef12-ed85-4153-bce5-e445b9bed28d
Bostan, Cristina
5c1ff24c-126f-4fb3-9406-fe7267a32510
Cieza, Alarcos
a0df25c5-ee2c-4580-82b3-d0a75591580e
Klassen, Anne
54c93f64-8c04-4f85-b623-a1d8871b91fe

Fayed, Nora, Schiariti, Vero, Bostan, Cristina, Cieza, Alarcos and Klassen, Anne (2011) Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions. Quality of Life Research, 20 (8), 1247-1258. (doi:10.1007/s11136-011-9851-5). (PMID:21293932)

Record type: Article

Abstract

Purpose. The impact of cancer on children can be assessed through various concepts including mental and physical health status and most significantly quality of life (QOL). It has been difficult to compare data collected through these instruments due to a lack of continuity or understanding of overlaps and gaps between them. To delineate the content of the most commonly used instruments in childhood cancer on an item-by-item basis, this study used standardized methods to link health information to the International Classification of Functioning, Disability, and Health (ICF) as well as World Health Organization (WHO) standard definitions of health and quality of life.

Method. MEDLINE, CINAHL, EMBASE, PsycINFO, Cancerlit, and Sociological Abstracts were searched from the inception of each database to June 15th, 2009 for health status and quality of life instruments. The six most common cancer-specific and generic instruments employed in primary research in childhood cancer were analyzed on an item-by-item basis by two content assessors specializing in ICF linking and WHO definitions of health and QOL, using a standardized iterative technique developed at the ICF Research Branch.

Results. We report the extent to which health status and QOL are represented in each instrument. Most measures emphasize a majority health status perspective according to WHO definitions of health. The generic instruments stress activities and participation domains over body functions or environment factors according to the ICF while cancer-specific instruments vary in their emphasis. Initial phase of coding agreement between assessors was in the substantial range (0.6–0.8 using Cohen’s kappa).

Conclusion. A comprehensive and systematic content analysis of the most commonly employed health status and QOL instruments was conducted for this review. Two criteria were described as follows: the perspectives of the instruments (i.e., health vs. QOL) and the health content (according to ICF components). No single instrument demonstrated an ideal balance of content characteristics according to these criteria, and thus, each must be considered carefully relative to one’s particular research or clinical evaluative purpose.

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More information

Published date: 2011
Keywords: cancer, child, quality of life, health status, patient-reported outcomes, icf, world health organization
Organisations: Psychology

Identifiers

Local EPrints ID: 341012
URI: http://eprints.soton.ac.uk/id/eprint/341012
ISSN: 0962-9343
PURE UUID: 0c4eff69-b5ba-4883-97b3-ee5e87974641

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Date deposited: 10 Jul 2012 13:14
Last modified: 14 Mar 2024 11:33

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Contributors

Author: Nora Fayed
Author: Vero Schiariti
Author: Cristina Bostan
Author: Alarcos Cieza
Author: Anne Klassen

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