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Meeting Reports 2002

Workshop on the Burden of Skin Diseases Summary

September 4-5, 2002 (historical)

Overview

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) sponsored a "Workshop on the Burden of Skin Disease" on September 4-5, 2002, on the NIH campus. Congressional report language for the NIH FY 2002 appropriations bill requested that the NIAMS assess the burden of skin disease in collaboration with other Federal agencies and voluntary health and professional organizations. In response, the NIAMS assembled a committee, consisting of academia, voluntary health organizations, the NIH community, and other Federal agencies, to plan the workshop.

The NIAMS Skin Diseases Data Work Group, the Skin Disease Coalition (of voluntary organizations), NIH and other Federal agencies worked together to identify and invite participants. The workshop agenda and rosters are attached.

Goals

The primary goals of the workshop were to: (1) determine the components that need to be included within the totality of the burden of skin disease, and (2) assess the available data and data collection instruments relative to these components.

The agenda included an overview of the subject, followed by sessions on traditional measures of burden, personal and family aspects, quality of life measurements, impact on society, and currently available data sets and future data needs.

Issues Addressed

• Occupational Outcomes: Participants discussed the U.S. Bureau of Labor Statistics and Occupational Safety and Health Administration data regarding the direct impact of skin disease on occupational outcomes. These data sources rely on reports by employers who often have strong incentives to under report the number of work related episodes of skin injury or disease.

• Measurement of the Overall Burden: Participants identified the need for broad measures of morbidity, impact on quality of life, impairment, disability, and handicap to determine the burden. Measures are available, to a limited extent, from some of the organizations that have collected data on specific skin diseases. The quality and completeness of the data collected by the current measurement instruments have not been examined. The reliability of this data also may be questionable because it is frequently collected from self-selected samples of patients.

• Personal and Family Factors: Personal and family factors that influence the burden of skin diseases are derived primarily from anecdotal information and some survey data. While anecdotal stories of the burden/impact of skin disease on personal and family life are abundant, there is little systematic data collection on this topic. Several of the voluntary organizations have collected some of this data by means of surveys, but this represents a selected sample. There are no cross sectional or systematic population based collections of this type of data for skin disease.

• Development of Quality of Life Measures: Disease registries have undertaken the development of quality of life measures; workshop participants, however, discussed the problem of comparability of quality of life data collected for these registries because different assessment tools were used. There was also a discussion of the relative value of quality of life measures, particularly when comparing those that focus on a specific skin disease to those that focus on skin disease in general or on disease in general.

  The greater the number of disease-specific measures, the richer the data, but a greater number of general measures of quality of life/impact of disease facilitate the development of a single index of disease burden and permit comparisons between diseases or categories of disease. A particular problem with more general measurements of quality of life/impact of disease is separating the effects of diseases that leads to early mortality or severe disability from the impact of chronic, less severe diseases on the day-to-day aspects of quality of life. The instruments now in place quantify burden based on expert medical opinion and more heavily weight early mortality and decreased ability to generate income relative to adverse impacts on day-to-day quality of life. When patients are polled, these adverse effects on day-to-day quality of life caused by less severe chronic diseases are given much greater weight.

  Skin disease-specific measures include DermIndex (used by many registries) and Skindex (which is currently being refined and tailored to specific diseases). The National Cancer Institute currently is evaluating a health-related quality of life index.

• Societal Impact Measures: The discussion on societal impact measures primarily focused on economic impact and covered indices that compare disease impacts. One of the most popular of these is the Disability Adjusted Life Years (DALY). This index is heavily influenced by premature mortality and major disability. The disability component of this index is also determined by medical experts rather than by patients. Polls have shown that patients' reports of the impact of skin disease on their daily lives can differ markedly from clinician or other expert reports.

• Available Data Sets: Available data sets for the most part, consist of large administrative data sets. Most administrative data sets developed by health insurers use diagnosis codes based on the ICD-9 coding system. The ICD-9 chapter codes are useful, but infectious skin diseases, burns, chronic wounds, such as leg and decubitus ulcers, and other skin conditions, are not included in the skin disease chapter. ICD-9 coding for individual diseases (of skin and other organs systems) is less consistent and useful. Thus, attempting to add individual disease data from other chapters to supplement the skin chapter data adds another level of concern about the quality of the data. Another large dataset is the National Health and Nutrition Examination Survey (NHANES), a prospective survey of the U.S. population that provides high quality prevalence information. However, even large data sets have limited utility for assessing rare diseases, as only a few cases will be present in the data set.

• Closing General Discussion: Workshop participants recommended that core measures of the burden of skin disease be developed (general, skin-specific, and skin disease-specific) to generate data on incidence, prevalence, economic burden, quality of life, disability, and handicap. These outcomes should be arrayed in a matrix against personal, family, and societal impacts. The available metrics then should be organized within this matrix, so that gaps can be identified and metric development prioritized.

Report in Development

Presenters are reviewing the presentations and discussions that took place at the workshop. After completing their review, they will consider expanding or further developing their abstracts to include key discussion points. The updated abstracts will serve as the basis for a workshop summary and recommendations to be written by the planning committee and published in a dermatology journal. The final report will be used to plan future NIAMS initiatives.