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In defense of data
Editorial In defense of data Data gathering can be arduous and the results skewed, in fact quite unrepresentative of reality if the data gathering instruments are faulty or the population sample inappropriate. Yet often, without close assessment of the quality and limitations of a data base, the available facts or extrapolations therefrom are used as a picture of the present and a springboard for planning and forecasting. Fortunately for dermatology this is not the case. Among the specialties we are clearly avant-garde in the firm and extensive data base we have established concerning the prevalence of dermatologic disease, the need for care, and response to need. Since 1967 when the National Program for Dermatology (NPD) began our reflective assessment of ourselves, we have-looked critically at the burden of dermatologic disease that is our responsibility and challenge in order to judge our effectiveness in patient service, education, and research. In the first published NPD report of 1968,1 it was patently obvious that there was a dearth of dermatologic facts as they relate to the prevalence of disease and measurement of need. There were, of course, statistics from clinics, the armed forces, and chronic care hospitals, but except for my studies on a Japanese population and those of a health officer in the Faeroe Islands, no effort had been made to examine a non institutionalized population unselected for dermatologic complaint. To glean the data we required, we as a specialty became part of the Health and Nutrition Examination Survey, HANES, an ongoing study of the health of the Nation established by an Act of Congress and implemented through the National Center for Health Statistics. We were able to become part because we demonstrated an understanding of population surveys, had the backing of the Academy, our most representative organization, and perhaps most important, had the support of the dermatologic associations and individuals who would ensure the development of a valuable survey instrument with a mechanism for implementing the study. Over one hundred dermatologists, mostly senior residents, participated in the survey, examining a population sample of 21,000 indi0190-9622/80/080193+02S00.20/0 © 1980 Am Acad Derrnatol
viduals selected by the Bureau of the Census as representative of Americans." But this was only the beginning. Our sophistication in data gathering procedures facilitated participation in other HEW studies such as the' 'National Ambulatory Medical Care Survey, ":\ the "Dermatology Practice Study Report,' q and a close focus on supply, demand, and distribution of dermatologists in the Assessment of manpower for dermatologic care." The information generated has provided the data base for a recent "Analysis of Research Needs and Priorities in Dermatology, "H supported by the National Institutes of Health and elaborated in some detail in a special issue of the Journal of Investigative Dermatology. The stunning suprises from all these data begin with the fact that almost a third of the population, 60.6 million Americans, have a dermatologic problem that should be seen at least once by a physician for assessment or care. Of these, some 23 million have dermatologic complaints such as discomfort, disability, or disfigurement, with 82% of the complaints verified as serious by the examining dermatologist. Problems of the hands (9%) and feet (16%) proved a handicap for housework or employment. In fact, diseases of the skin account for almost half of all reported cases of industrial illness in the United States. Of those who have a dermatologic problem, only one in six consults a physician, and fewer than one in twenty seeks the care of the physician especially trained in the diagnosis and treatment of skin disease. Despite this, office visits for dermatologic complaints exceed the number of visits prompted by the most common symptomatic problems, including sore throat, as well as the combined total visits for pregnancy and routine gynecologic care. Half of the visits for skin problems are presented to the internist, pediatrician, or generalist. Most visits for dermatologic complaints are not to the dermatologist . In fact, twothirds are not. These data are reinforced by the Health and Nutrition Examination Survey where only 19% of those with skin complaints were receiving, in the opinion of the examining der-
193
Journal of the American Academy of Dermatolog y
194 Marie -Louise Johnson matologist , the best possible care. Of the 81 % who were not, almost all, 94%, were judged as having conditions that would improve with expert care. The obstacles to care included cost, distance, available transportation, ignorance about possible care, and a variety of other reasons . The data obtained on discomfort, disability, and disfigurement from specific diagnoses, when combined with information gathered on the source and adequacy of treatment, have been the very first such data available from a national population sample. It has been regarded as imaginative and important by the survey planners and is one major reason we arc being considered for inclusion in a new subset of the Examination Survey that will focus on Hispanic Ameri cans. For our own concerns about unrecognized leprosy which is of ever-increasing prevalence in our Bellevue clinic population, we would welcome the opportunity to continue the collaboration. Without augmenting our data base, however, we presently have on tape facts that are untapped but of value to industry, health planners, and physicians assessing manifestations of aging, actinic damage, or correlations between cutaneous changes and common metabolic problems. Present understaffing at the National Center for Health Statistics has encouraged the providing of tapes to those with the expertise to study specific questions. One group associated with the National Academy of Sciences and concerned with alterations in the ozone concentration of the stratosphere has been looking at manifestations of actinic damage as related to skin color, light exposure, plus latitude and longitude of longest residence-all data that we had assembled. Another group has been concerned about manifest skin sensitivity to irritants and allergens as related to skin color and historical data indicative of the atopic diathesis . Perhaps most significant among all our surprise facts is the prevalence of malignancy . Basal cell carcinoma, confirmable by biopsy, was diagnosed for more than half a million Americans, twice the number estimated by the Third National Cancer Survey . Remembering that our sample represents the entire coterminous United States, those both near and far from medical care and unselected for skin concern or complaint, emphasizes the importance of the higher figure. Actinic keratoses are
found in almost 2 million Americans. The age distribution tables indicate most of the malignant and premalignant lesions are after the age of 35, with the prevalence from ages 65 to 74 double that at ages 55 to 64 years. At the time the study was completed, it was estimated that there were 21 million persons in the United States 65 years of age and older. By the year 2,000 it is projected , reasonably, that there will be 30.6 million. Aware that not only malignancy but also all significant dermatologic pathology increases with age makes this projection of some moment. An overview of our data gathering and its special implications for priority setting as it relates to needs for research in dermatology was well received at our January presentation to members of the Congress and Directors of the National Institutes. Hard facts on morbidity and disability due to skin disease had a persuasive economic urgency when translated into workdays lost and health care expenditures at a national annual cost of 2.6billion dollars. The presentation demonstrated most vividly our long track record of self-assessment, of prudent utilization of hard data, of our eagerness to extend the data base, to advance new knowledge, and, perhaps most important, our readiness to chart new courses that are responsive to perceived need. A firm and current data base gives a specialty the lead time required to recognize and respond to change. Marie-Louise JOhIlSOIl , M.D., Ph.D . Nell' York, NY REFERENCES · I . National Program for Derm atology, Joint Committee on Planning for Dermatology. American Academy of Dermatolo gy, 1968. (Preliminary Report.) 2. John son , M-L, Roberts J: Skin conditions and related need for medical care among persons 1-74 years. Vital and Health Statistics, Series II, No . 212, DHEW Publication No. (PHS) 79-1660. 3 . Steam RS, Johnson M-L , DeLozier J: Utilizat ion of physician services for derm atologic complaints. Arch Dermatol 113:1062-1066, 1977. 4. Dermatology Practice Study Report. Conducted by Medical Activities and Manpower Project, Division of Research in Medical Educat ion, Univers ity of Southern California School of Medicine, September, 1977. 5. Krasner M, Ramsay DL, O 'Sullivan VJ Jr, Weary PE: Dermatologists for the Nation : Projections of supply and dem and. Arch DermatoI113:1367-137I, 1977. 6 . Kraning KK, Odland GF : Analysis of research needs and priorities in dermatology. J Invest Dermatol 73:395-513, 1979.
viduals selected by the Bureau of the Census as representative of Americans." But this was only the beginning. Our sophistication in data gathering procedures facilitated participation in other HEW studies such as the' 'National Ambulatory Medical Care Survey, ":\ the "Dermatology Practice Study Report,' q and a close focus on supply, demand, and distribution of dermatologists in the Assessment of manpower for dermatologic care." The information generated has provided the data base for a recent "Analysis of Research Needs and Priorities in Dermatology, "H supported by the National Institutes of Health and elaborated in some detail in a special issue of the Journal of Investigative Dermatology. The stunning suprises from all these data begin with the fact that almost a third of the population, 60.6 million Americans, have a dermatologic problem that should be seen at least once by a physician for assessment or care. Of these, some 23 million have dermatologic complaints such as discomfort, disability, or disfigurement, with 82% of the complaints verified as serious by the examining dermatologist. Problems of the hands (9%) and feet (16%) proved a handicap for housework or employment. In fact, diseases of the skin account for almost half of all reported cases of industrial illness in the United States. Of those who have a dermatologic problem, only one in six consults a physician, and fewer than one in twenty seeks the care of the physician especially trained in the diagnosis and treatment of skin disease. Despite this, office visits for dermatologic complaints exceed the number of visits prompted by the most common symptomatic problems, including sore throat, as well as the combined total visits for pregnancy and routine gynecologic care. Half of the visits for skin problems are presented to the internist, pediatrician, or generalist. Most visits for dermatologic complaints are not to the dermatologist . In fact, twothirds are not. These data are reinforced by the Health and Nutrition Examination Survey where only 19% of those with skin complaints were receiving, in the opinion of the examining der-
193
Journal of the American Academy of Dermatolog y
194 Marie -Louise Johnson matologist , the best possible care. Of the 81 % who were not, almost all, 94%, were judged as having conditions that would improve with expert care. The obstacles to care included cost, distance, available transportation, ignorance about possible care, and a variety of other reasons . The data obtained on discomfort, disability, and disfigurement from specific diagnoses, when combined with information gathered on the source and adequacy of treatment, have been the very first such data available from a national population sample. It has been regarded as imaginative and important by the survey planners and is one major reason we arc being considered for inclusion in a new subset of the Examination Survey that will focus on Hispanic Ameri cans. For our own concerns about unrecognized leprosy which is of ever-increasing prevalence in our Bellevue clinic population, we would welcome the opportunity to continue the collaboration. Without augmenting our data base, however, we presently have on tape facts that are untapped but of value to industry, health planners, and physicians assessing manifestations of aging, actinic damage, or correlations between cutaneous changes and common metabolic problems. Present understaffing at the National Center for Health Statistics has encouraged the providing of tapes to those with the expertise to study specific questions. One group associated with the National Academy of Sciences and concerned with alterations in the ozone concentration of the stratosphere has been looking at manifestations of actinic damage as related to skin color, light exposure, plus latitude and longitude of longest residence-all data that we had assembled. Another group has been concerned about manifest skin sensitivity to irritants and allergens as related to skin color and historical data indicative of the atopic diathesis . Perhaps most significant among all our surprise facts is the prevalence of malignancy . Basal cell carcinoma, confirmable by biopsy, was diagnosed for more than half a million Americans, twice the number estimated by the Third National Cancer Survey . Remembering that our sample represents the entire coterminous United States, those both near and far from medical care and unselected for skin concern or complaint, emphasizes the importance of the higher figure. Actinic keratoses are
found in almost 2 million Americans. The age distribution tables indicate most of the malignant and premalignant lesions are after the age of 35, with the prevalence from ages 65 to 74 double that at ages 55 to 64 years. At the time the study was completed, it was estimated that there were 21 million persons in the United States 65 years of age and older. By the year 2,000 it is projected , reasonably, that there will be 30.6 million. Aware that not only malignancy but also all significant dermatologic pathology increases with age makes this projection of some moment. An overview of our data gathering and its special implications for priority setting as it relates to needs for research in dermatology was well received at our January presentation to members of the Congress and Directors of the National Institutes. Hard facts on morbidity and disability due to skin disease had a persuasive economic urgency when translated into workdays lost and health care expenditures at a national annual cost of 2.6billion dollars. The presentation demonstrated most vividly our long track record of self-assessment, of prudent utilization of hard data, of our eagerness to extend the data base, to advance new knowledge, and, perhaps most important, our readiness to chart new courses that are responsive to perceived need. A firm and current data base gives a specialty the lead time required to recognize and respond to change. Marie-Louise JOhIlSOIl , M.D., Ph.D . Nell' York, NY REFERENCES · I . National Program for Derm atology, Joint Committee on Planning for Dermatology. American Academy of Dermatolo gy, 1968. (Preliminary Report.) 2. John son , M-L, Roberts J: Skin conditions and related need for medical care among persons 1-74 years. Vital and Health Statistics, Series II, No . 212, DHEW Publication No. (PHS) 79-1660. 3 . Steam RS, Johnson M-L , DeLozier J: Utilizat ion of physician services for derm atologic complaints. Arch Dermatol 113:1062-1066, 1977. 4. Dermatology Practice Study Report. Conducted by Medical Activities and Manpower Project, Division of Research in Medical Educat ion, Univers ity of Southern California School of Medicine, September, 1977. 5. Krasner M, Ramsay DL, O 'Sullivan VJ Jr, Weary PE: Dermatologists for the Nation : Projections of supply and dem and. Arch DermatoI113:1367-137I, 1977. 6 . Kraning KK, Odland GF : Analysis of research needs and priorities in dermatology. J Invest Dermatol 73:395-513, 1979.