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A Community Based, Symptom Complex, Illness Reporting System

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A Community Based, Symptom Complex, Illness Reporting System A COMMUNITY BASED, SYMPTOM COMPLEX, ILLNESS REPORTING SYSTEM KARL R. REINHARD, D. v. M., PH. D. Chief, Office of Health Status Surveillance, Health Program Systems Center Office of Research & Development, Indian Health Service Health Services & Mental Health Administration, United States Department of Health Education & Welfare Tucson, Arizona U.S.A. Summary A system for the recording and reporting of illnesses occurring within a community has been developed which utilizes community members as reporters and uses condensed arrays of symptom descriptors and modifiers as a termino­ logical core for the description of illness as a symptom complex. This approach was first developed and tested in epidemiological studies of the population of isolated, small arctic communities, some years ago. The more recent develop­ ments include the expansion of the terminological core to cover a greater variety of diseases, the codification of this terminology, the preparation of fixed descriptor-modifier formats to facilitate short-form reporting, modular cm:struction of the terminological array to aid in excerption for special uses, and machine-sort routines to facilitate epidemiological analyses. Computerized data acquisition, storage and retrieval methods are projected as next steps. The codified descriptor-modifier arrays and machine-sort techniques have been applied to the earlier data and have confirmed the epidemiological utility of the system. The kinds of illnesses occurring in a community can be characterized and quantified. The system enables the detection of »problem,. households and »problem» individuals. Epidemic as well as endemic problems can be distinguished. Customary epidemiologic evaluations such as attack rate, age-sex distributions, and morbidity prevalence and incidence rates can be computed. Symptom association nets with Bayesian likelihood coefficients can be constructed to characterize disease entities. Natural, potential extensions of the system include such items as reporting of illness for medical advice, computer-assisted triage, codified electronic or electromagnetic transmission as well as automated translation of illness reports. The primaty focus of the system is on the community and its involvement in derivation of data to guide health services planning and delivery. Emphasis is placed on utilization of local manpower resources, not only to produce a sparing effect on high-cost professional manpower, but also to contribute positively toward community development. Introduction Those of us who have been involved m scientific inquiry over many years 118 have found, at one time or another, that a method or approach developed to serve the exigencies of earlier investigations may acquire new significance and utility in the light of later needs. The approaches of former years, refurbished and facilitated with improved techniques, instrumentation, .and extended concepts, often serve very well to meet current or future needs. Such is the case with the subject of this paper. Early Investigations: In the years 1955 to 1960, the author was involved in intensive pathoecological studies of the population of St. Lawrence Island, in the northern Bering Sea region. The two communities on this island were excellent sites for elucidation of factors affecting the health status of isolated population groups. But the pursuit of epidemiological studies by orthodox approaches would not have been possible due to the lack of resident health professional manpower. The studies were operated out of a base laboratory in Anchorage, Alaska, which was about 700 air-line miles distant. An itinerant public health nurse and school teachers served as the sources of medical relief for residents on the island. These persons were kept too busy by their routine duties to become involved with research studies. On-site study work was limited, by cost factors and other project activities, to three or four field trips a year, each of two to three weeks duration; therefore, the need to maintain constant epidemiological surveillance required the development of unorthodox means to document and report episodes of illness throughout the ye::i.rs. To bridge this informational hiatus the total community was invited to p:i.rticipate in the study. The motivation to do so arose out of the general desire of the people to obtain more effective health services, coupled with the realization that the "outside" world, including agencies having responsibility for health care, had no precise information on the true status of the health of the community. Initial field activity was devoted in large part to meetings and discussions with the village councils, health committees, volunteer health workers and interested citizens, both individuals and groups. A plan ,,f action was developed through these meetings. The councils accepted the idea of conducting weekly village surveys to record and report episodes of illness, and appointed volunteers to carry out the local work. The general citizenry, being informed by meetings and the typical, small town, oral information network, was favorably disposed toward the project. The first step in technical preparation for the work was to develop a terminologic core for the reporting. On the basis of general observations of the kinds of illness experienced by these communities -- which, in reality, differed little qualitatively from other communities in arctic and temperate climes--an array of symptom and simple syndrome descriptors w:i.s developed. A basic, initial decision affecting the direction of the work was that the reporters were to refrain from attempting to »diagnose» conditions. Their 119 function was solely to report and describe illnesses in symptomatologic terms, plus other accessory information, which would in turn serve to characterize the nature and severity of the observed disease when interpreted by an appropriate professional health worker. In conference with the volunteer workers, as well as several other residents who were competently bilingual, the equivalents of the array of technical symptomatologic terms were determined in both colloquial English and Eskimo. An illustration is given in table 1. Space does not permit publication of the entire array of terminologic equivalents. These were corroborated independently by Dr. Charles C. Hughes, (1960) who at that time was involved in anthropological studies of the population of the island. The objective of developing an array of descriptors in the three linguistic phases was to arrive at a common understanding of nomenclature. Forms were provided for recording, as well as stamped envelopes for mailing the reports. The forms required the following information on each illness recorded: Name of individual, age, the weekly period covered by the report, the symptoms of illness, and the source of treatment, if any. The reporters were also asked to record births and deaths, identifying the individuals involved. Since premature stereotyping of symptoms and syndrome descriptors could have led to qualitative bias of reporting, the symptomatologic terms were not itemized in the reporting forms. The reporting work was started in the summer of 1955 and carried forward to the end of 1957. During each field visit, the author met with the reporters, village councils and commirttees concerned ito discuss and solve /technical problems arising in the work, to plan improvement, and to report on the significance of the information being derived. Of the information collected in the village of Savoonga over a period of approximately 125 weeks, copies of the reports of 67 weeks have survived intact by remaining in the author's possession, rather than institutional files. Some of the epidemiological facts and implications contained in the surviving reports covering, 64 of the 67 weeks, are presented in a later section of this paper to demonstrate the utility of the system. Current investigations Other than verbal presentation in several conferences (Reinhard, 1956, 1964, 1972) the early work described in the foregoing has not been publicised. After joining the Health Program System Center in 1969, the author undertook further development of this approach to community health surveillance, because of the potential it possessed for deriving the kind of basic epidemiological information needed to plan, provide and evaluate health services for geographically or culturally isolated communities-- 120 particularly those which arc socially and economically disadavantaged or are medically indigent for other reasons. Development of the Semiotic Base: The initial effort of the current piuse oi the study was the redevelopment of arrays of symptom descriptors a;,d modifiers. This was done for the following reasons: (a) To insure symptomatologic coverage for most of the common diseases or disorders, including the mental and behavioral (which were not an emphasized phase of the St. Lawrence work). (b) To allow detailed documentation of individual cases of illness (an eventual objective of the study,) which requires far more descriptors and modifiers than does epidemiological surveillance reporting. Several »generations» of descriptor-modifier arrays have been developed during the past two years as the result of study of the descriptions of physical signs and symptoms of approximately 150 disease entities on conditions. The list of diseases studied, using standard texts and references (Beeson and Mc Dermott, 1967, Douthwaite, 1967, Wintrobe et al., 1970, Yater and Oliver, 1961, Gordon et al., 1971, Krupp,
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