Nora Fayed

Linking health and health-related information to the ICF: a systematic review of the literature from 2001 to 2008

Introduction. In 1976, the World Health Organization (WHO) estimated worldwide disability prevalence at 10%%; recent evidence suggests the prevalence is even higher. Given the extent of disability around the world, it is essential for researchers and policy makers to have a uniform language for describing and discussing disability. The International Classification of Functioning, Disability and Health (ICF) is WHOs attempt to provide that standard language. Linking rules were published in 2002 and 2005 suggesting a method for standardising the process of connecting outcome measures to the ICF classification. The objective of this study is to study the extent to which the linking rules have been used by researchers to link health and health-related information to the ICF and collect the feedback about the current practices, applications and areas to improve the linking method. Method. Using a systematic review of health-based literature between 2001 and February 2008, we (1) determined research areas where the linking method is applied, (2) examined the characteristics of studies that linked information to the ICF and (3) described current practices and issues related to the process of linking health and health-related information to the ICF both quantitatively and qualitatively. Results. The systematic review yielded 109 articles from 58 journals that linked health information to the ICF and 58 of the articles employed published linking rules. The majority of articles were descriptive in nature, used linking for connecting content of health instruments to the ICF and linked English health content. Quality controls such as reliability checks, multiple raters and iterative linking processes were found frequently among users of the linking rules. Qualitative analysis created themes about: preparing units of information, who links to the ICF, reliability, matching or translating concepts from text to ICF categories, information unable or difficult to capture, quantitative reporting standards and overall linking process. Discussion. This review also shows that the linking process is a useful way to apply the ICF classification in research. With over 100 articles published in 58 peer-reviewed journals across 50 focus areas, linking health and health-related information to the ICF has been shown to be a useful tool for describing, comparing and contrasting information from outcome measures used to collect quantitative data, qualitative research results and clinical patient reports across diagnoses, settings, languages and countries.

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.

Refinements of the ICF Linking Rules to strengthen their potential for establishing comparability of health information.

Abstract Purpose The content of and methods for collecting health information often vary across settings and challenge the comparability of health information across time, individuals or populations. The International Classification of Functioning, Disability and Health (ICF) contains an exhaustive set of categories of information which constitutes a unified and consistent language of human functioning suitable as a reference for comparing health information. Methods and results In two earlier papers, we have proposed rules for linking existing health information to the ICF. Further refinements to these existing ICF Linking Rules are presented in this paper to enhance the transparency of the linking process. The refinements involve preparing information for linking, perspectives from which information is collected and the categorization of response options. Issues regarding the linking of information not covered or unspecified within the ICF are also revisited in this paper. Conclusion: The ICF Linking Rules are valuable for enhancing comparability of health information to ensure that information is available in a consistent manner to serve as a foundation for evidence-based decision-making across all levels of health systems. The refinements presented in this paper enhance transparency in, and ultimately reliability of the process of, linking health information to the ICF. Implications for Rehabilitation The International Classification of Functioning, Disability and Health (ICF) constitutes a unified and consistent language of human functioning suitable as a reference for comparing health information. Comparability of information is essential to ensure that the widest range of information is available in a consistent manner for any decision-maker at all levels of the health system. The refined ICF Linking Rules presented in this article outline the method to establish comparability of health information based on the ICF.

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

PurposeThe 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.MethodMEDLINE, 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.ResultsWe 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).ConclusionA 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.

Outcomes in pediatric neurology: a review of conceptual issues and recommendationsThe 2010 Ronnie Mac Keith Lecture

This paper discusses how to evaluate whether, and in what ways, treatments affect the lives of children with neurological conditions and their families. We argue that professionals should incorporate perspectives from patients and families to help them make decisions about what ‘outcomes’ are important, and we discuss how those outcomes might be assessed. A case vignette illustrates the differences and complementarity between the perspectives of clinicians and those of children and their parents. We recommend methods for expanding the range of relevant health outcomes in child neurology to include those that reflect the ways patients and families view their conditions and our interventions. We explore the added value of a ‘non‐categorical’ approach to the choice of outcomes. The International Classification of Functioning, Disability and Health is a useful biopsychosocial framework to ‘rule in’ relevant aspects of child and family issues to create a dynamic system of possible influences on outcomes. We examine the meaning of ‘health’, ‘health‐related quality of life’, and ‘quality of life’ as related but conceptually distinct outcomes. Specific issues are discussed about the construction, validation, and appraisal of outcome measures, as well as practical recommendations on how to select outcome measures in the clinical setting and research.

Content comparison of health-related quality of life measures for cerebral palsy based on the International Classification of Functioning

Purpose. Content comparison of health-related quality of life ((HRQOL)) measures is currently important because of the varying use of concepts and operationalisations. Our objective was to use the International Classification of Functioning Children and Youth version ((ICF-CY)) as a standard by which to compare the content of all cerebral palsy ((CP)) disease-specific HRQOL measures. Methods. MEDLINE and PsycINFO databases were searched up to September 2008. The content of HRQOL measures was linked to the ICF-CY by two trained assessors. Agreement was calculated using kappa ((κ)) statistic. Results. Four disease-specific HRQOL measures were identified. Three generic measures were selected as a content comparison group. A total of 576 concepts contained in the measures were identified. Eighty-nine percent ((n  ==  510)) were linked to 127 different ICF-CY categories. Overall κ agreement was 0.76 ((95%% CI: 0.75–0.77)). Forty percent of concepts were linked to the activity and participation component. The measures varied in the number of concepts and the distribution of concepts by ICF-CY components. Conclusions. The ICF-CY provided an international accepted, structured framework for the content comparison of CP-specific and generic HRQOL measures. The results will provide clinicians and researchers with additional information, useful when selecting HRQOL measures.

Children's perspective of quality of life in epilepsy

Objective: To study child mental health, parental support, and social support of children with epilepsy as these relate to quality of life (QOL) using child self-report, seizure-related variables, and estimated verbal intelligence based on receptive vocabulary. Methods: A cross-sectional structural equation model of baseline data from the QUALITÉ cohort study, which includes 6 Canadian child epilepsy ambulatory programs. A sample of 3,481 children were screened for the following eligibility: 8 to 14 years of age, with active or medication-managed epilepsy. Of 894 eligible children, 506 agreed to participate, of whom 26 were then excluded because of an inability to self-report based on a standard cutoff score of receptive vocabulary lower than 70. The primary outcome of child-reported QOL was measured using the Child Epilepsy QOL Questionnaire. Results: From the childs perspective, epilepsy-specific QOL is strongly related to their mental health and social support but not to their seizures. Specifically, child mental health and peer support exhibit direct associations with QOL; parental support has both direct and indirect associations with QOL (via child mental health); estimated verbal intelligence exerts its strongest association with QOL through mental health; and seizure status exhibits a weak relationship to QOL only through mental health. Conclusions: Among children with epilepsy aged 8 to 14 years, mental health and social support should be areas of focus in the assessment of QOL. Controlling seizures is insufficient care for influencing the childs perception of their life.

Exploring predictors of optimism among parents of children with cancer.

Objective: To explore predictors of optimism in parents of children with cancer.

Illustrating child-specific linking issues using the Child Health Questionnaire.

ABSTRACTThe publication of the International Classification of Disability, Functioning and Health Children and Youth (ICF-CY) version as a derived classification of the ICF has enabled child health and disability researchers to implement the classification into their work. There is little discussion available in the literature specifically about challenges associated with connecting ICF-CY to child health instruments. The objective of this study was to apply new reflections about linking and previous linking rules to a child-specific instrument using the Child Health Questionnaire as an example. We discovered the importance of knowledge in child health assessment as a linking requisite, issues with linking information about child behavior, the importance of clarifying the vantage point from which one is linking (e.g., child, parent, or family), and the fact that one should carefully consider the true purpose or targets of items before linking them to the ICF-CY, irrespective of the simple language used in the item. Finally, we propose the use of a new not-defined abbreviation to denote items that assess overall child development: not-defined-development (nd-dv).

Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review

The aims of this study were to (1) search the literature in order to identify the challenges facing adolescents and emerging adults with epilepsy; and (2) categorize these issues within both the framework of the International Classification of Functioning, Disability and Health (ICF) and an empirical model of quality of life (QOL) in childhood epilepsy.