Applying the International Classification of Functioning, Disability and Health (ICF) to measure childhood disability.

The International Classification of Functioning, Disability and Health-ICF addresses the broad need for a common language and classification of functioning and disability. A parallel need is appropriate measures compatible with the content of the ICF to document the nature and impact of limitations of function, activities and participation. The interaction of developmental characteristics and disability among children represent special challenges for classification as well as measurement. Demographic trends emphasize the need for universal measures that encompass the components of the ICF and can be used in surveillance, screening and evaluation. This paper identifies issues related to application of the ICF to measure disability in childhood; reviews approaches and tools to assess childhood disability and identifies priorities for the development of measures of functioning and disability in children based on the ICF. The development of measures should be framed within a framework of children's rights and application of the biopsychosocial model to document profiles of functioning and disability of children.

Proxy reliability: health-related quality of life (HRQoL) measures for people with disability.

OBJECTIVES: Research and surveillance activities sometimes require that proxy respondents provide key exposure or outcome information, especially for studies of people with disability (PWD). In this study, we compared the health-related quality of life (HRQoL) responses of index PWD to proxies. METHODS: Subjects were selected from nursing home, other assisted living residences, and from several clinic samples of PWD. Each index identified one or more proxy respondents. Computer-assisted interviews used a random order of measures. Proxy reliability was measured by intraclass correlation (ICC) and kappa statistics. HRQoL measures tested included the surveillance questions of the Behavioral Risk Factor Surveillance System (BRFSS), basic and instrumental activities of daily living (ADLs and IADLs), medical outcomes study short-form 36 and 12 (SF-36 and SF-12). RESULTS: A total of 131 index-proxy sets were completed. In general, agreement and reliability of proxy responses to the PWD tended to be best for relatives, with friends lower, and health care proxies lowest. For example, the ICC for the physical functioning scale of the SF-36 was 0.68 for relatives, 0.51 for friends, and 0.40 for healthcare proxies. There was a tendency for proxies to overestimate impairment and underestimate HRQoL. This pattern was reversed for measures of pain, which proxies consistently underestimated. The pattern among instruments, proxy types, and HRQoL domains was complex, and individual measures vary from these general results. CONCLUSIONS: We suggest caution when using proxy respondents for HRQoL, especially those measuring more subjective domains.

Disability outcomes research: why this supplement, on this topic, at this time?

The objective of this supplement is to define disability outcomes research and to describe the issues facing this new discipline. Drawing on the scientific, English-language literature, this group of articles reviews and comments on the current methods and measures of disability outcomes research, with an eye on providing insights into future directions for disability outcomes research. The future includes expansion of the framework that defined disability and evolution of the methods for the research itself.

Measures of outcomes for children and youth.

OBJECTIVE: To provide an overview of the issues related to the measurement of disability outcomes among children and on an assessment of selected instruments. DATA SOURCES: Published scientific English literature in the area of child development, public health, and outcomes research. STUDY SELECTION: Studies selected were those that provide global measures of health outcomes focusing on children. Those selected allowed data collection to address the effects of intervention on individual children or populations of children. Psychometric characteristics were also a part of the selection process. DATA EXTRACTION: Specific guidelines for assessing the instruments include the number of scales and index capability, breadth of domains, inclusion of norms, capacity to measure elements of the World Health Organization model of functioning and disability, item and scaling bias, respondent burden, administrative burden, and retest reliability. DATA SYNTHESIS: Thirteen instruments were included. The measures vary in their utility for broad versus specific applications, eg, clinical and public health uses. Children themselves are often not part of the assessment process. In addition, environmental influences on health outcomes of children are not adequately addressed. CONCLUSION: Although it is challenging to evaluate outcomes associated with children with disabilities, there are frameworks and instruments that will advance outcome measurement. Approaches that include children should be explored further, and the environmental influences including and beyond the family require further measurement development.

Revision of the International Classification of Impairments, Disabilities, and Handicaps: developmental issues.

Variability in approaches to define and classify disability has constituted persistent problems in documenting the epidemiology of disability and providing appropriate services. The major institutions of health care, mental health, and welfare often have separate systems of classification and terminology related to defining eligibility for programs and funding for services. In 1980, the International Classification of Impairments, Disabilities and Handicaps-ICIDH was published by the World Health Organization as a companion document of the International Classification of Disease to document the consequences of illness or injury. Current problems concerning the classification of childhood disability in health, education, and related services have resulted in growing interest in the revision of the ICIDH as a classification tool. The strengths and limitations of the ICIDH are examined in general, as well as with specific reference to its ability to document the nature and epidemiology of childhood disability. This paper (1) describes the ICIDH taxonomy and representative contributions; (2) reviews issues and concerns contributing to its revision; (3) summarizes changes in the revised ICIDH2 draft document, and (4) identifies issues of particular relevance to children and public health applications.

Facilitating and assessing progress toward independence: SPARX.

As children with spina bifida are thriving physically, a need for encouraging independent behavior has arisen. The dynamics of dependency undermine youngster's potential for autonomous functioning. As programs are being developed, there is a need to measure the dimensions which contribute to independent behavior. As an outgrowth of the SPARX independence-training program at Shepherd Spinal Center, Atlanta, such a tool is being developed. The Independent Behavior Inventory focuses on those dimensions contributing to development of independence, including problem-solving, communication, self-help, family support, etc. Although the sample is small, reliability and validity statistics have been computed, and look promising. Use of the instrument in clinical settings in encouraged. Professionals are encouraged to intervene early with families so that the dynamics of dependency can be undermined and independence facilitated.