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, Chatton and Chatton, 1971, Lyghit et al., 1966.) is presented in Appendix Table 1. The major criteria applied to the development of the descriptormodifier arrays were the following: 1. The items included were to be symptorr.s that were likely to be perceived and defined by medically-untrained individuals. 2. Medical jargon was not acceptable. 3. Redundancy of terminology was not acc~ptable. 4. Certain simple symptom complexes or syndromes which are commonly perceived as a whole were acceptable. (Example: Coryza or »Head Cold» and Tracheobronchitis or »Chest Cold»). 5. The array was to be kept to a minimum size consistent with the need for clear and detailed description of cases of illness. 6. To facilitate extraction and utilization of portions of the array for special purposes, it was to be arranged in functional modules. The more recent versions of the semiotic core of the system includes descriptors and modifiers for recording vital signs and reflexes. These were introduced to make the system potentially useful as an aid for training auxilliary health workers, particulary »medics» or physician assistants, and as a semantic core for recording and reporting done by such personnel. The current array of descriptors, modifiers and other terms is given as Appendix Table 2. It is obvious that this terminology is technical. The common language equivalents should be determined before application of the array to community-based reporting. It is likely, too, that a glossary of term definitions

121 would be required as an adjunct in trammg reporters to use the array. The array has code designations as used by us in the application trial described later in the paper. The main components of the terminological array arc: A. Symptom Descriptor Headings. 1. General Medical 2. Neurological and Sensory. 3. Mental-Social-Behavioral. 4. Lesions, Non Traumatic. 5. Lesions, Traumatic. 6. Other Notes and Observations. B. Modifier and other terms. 1. Array of common modifiers. 2. Anatomic Location Descriptors. 3. Pre-existing condition descriptors. Arrays or descriptors for common laboratory tests and for cause of injury c:itegories have also been developed, but are not discussed here because they were not involved in the applicationary phase of the study. To facilitate and guide the use of descriptor-modifier combinations, fixed formats for reporting have been developed. Space does not permit inclusion of all of them in this paper. An example is given in Appendix Table 3. The complete set can be obtained on request to the author.

Application of Semiotic Base: The revised and organized descriptor and modifier arrays were applied in reanalysis of the data of the St. Lawrence Island studies of 1955-57. Objectives of this application were: 1. To test the utility of the semiotic system in practical application. 2. To determine how many of the symptom descriptors and modifiers of the array were actually utilized in actual epidemiological surveillance of a community, and to determine the frequency of use. 3. To formulate concepts to guide the development of a computer based system for acquisition, storage, retrieval and analysis of data reported for community health surveillance. 4. To provide a finer analysis of the St. Lawrence data, through automated data sort processes, than was possible at the time of the original work. It is evident that these objectives were highly interdependent. The data specifically used in this test was that obtained from the town of Savoonga, covering 64 of 67 weeks, in four periods, occurring intermittently over a 1 period of 2 / 4 years. The terminology actually used in the Savoonga reports was colloquial English. The author provided the linkage to the corresponding

122 technical terms of the descriptor-modifier array on basis of detailed knowledge of ,the operating conditions and semantic basis of the original field work. Data Format: The coding was designed to provide as much relevant symptomatic information as possible within the number of columns available on a standard keypunch card. The following were recorded in code: Week #, Year, ViHage#, Household#, Individual #, Sex Age (in days, weeks, months or years,) and symptomatology and other accessory information, such as preexisting conditions. Specification of sex and age were introduced from an accessory data bank by linkage through the unique identification number. The card space allotments allowed the reporting of as many as 5 symptoms. Each symptom description sequence contained the following: (1 space,) symptom category {Gen. Med., Neurol., etc.) (2 spaces,) symptom descriptor (Cough, Pain, etc.) (3 spaces,) symptom modifier (1 space, modifier category; 2 spaces, modifier item) (3 spaces,) second symptom modifier, divided as above (3 spaces,) anatomic locator In the Savoonga reporting work, no data was obtained consistently relative to the status of the patient and days of restricted activity. Therefore, spaces for such items were not included in the format. In order to introduce these and other factors into the system, a second card format might have to be developed, or some of the items removed from the first card format. Table 2 illustrates some digital codes, together with corresponding word descriptors. Analytical Routines: Ordering and tabulation of data was effected in code by machine sort processing of punch cards, coupled with machine printout. Analysis of data was done manually from the tabulations. To compare purely "manual" methods with machine-sort-assisted methods, a manual tabulation of the events and their descriptive components was made at the time of preparation of code sheets from the original report data. In addition, symptom-association nets were constructed from unordered digital printouts of >ieekly data as well as printouts ordered by prevailing symptoms. In these comparisons it was found that machine-sort preparations of data reduced the time of requirements of manual phases of analysis approximately tenfold. Adequacy of Semiotic System: A total of 343 descriptor-modifier combinations were used during 64 weeks of reporting from Savoonga. Only 38 (11 °/o) of these were cited 10 times or more, and account for 95 °/o of the symptom citations. (See Table 3) Some of the less-cited symptoms (not cited in Table 3) were important ones; for example, »urine-bloody,» »swelling­ mastoid region,» »swelling-breast,» and »heart symptom.» Nevertheless the results do indicate that epidemiological surveillance could be conducted with

123 relatively fe,., descriptor terms, particularly if one is not concerned with specific locations of numerous cuts, bruises and other minor injuries. All of the de~criptor and modifier items which were actually used in the application of the Savoonga data are marked with an asterisk in Appendix Table 2. Table 4 presents the record of usage of various components of the s~miotic core in the Savoonga study. It is obvious that, of the various sympto:natological groups, the »General Medical» terms were the most used. The low level of us.tge of the ne-.:rological and m:sory terms is due primarily to the fact that a major proportion of the component items of that category are signs or reflexes which would have to be elicited by physical tests, and tberefore would not be used in purely observational reporting. These aforementioned items have been included in the array with view of possible future use in documentation of cases by trained, auxilliary medical workers, particularly physician assistants. Certain other observable neurological symptoms are associated with low-frequency illnesses not detected in this population during the reporting period. The reporting of mental, social and behavioral disorders was not an emphasized component of the original reporting studies; therefore, the lack of use of them was a result of project protocol bias. With re3ard to lesions, both traumatic and non-traumatic, it is likely that a more extended survey period would have led to use of a greater variety of descriptors, as chance provided for the occurrence of a greater variety of injuries or other lesions. ·The proportion of usage of common modifiers was surprisingly high, since the reporters in the original study were not asked to provid~ great descriptive detail. The real test of utility of the common modifiers will come when the semiotic system is tested for application to the detailed documentation of individual cases of illness. The latter requires much more descriptive detail than docs general epidemiological surveillance. The high level of use of the anatomic locator terms indicates the great utility of this component-even when applied only to epidemiological surveillance. For sp~cific identification of the te:-ms used in the Savoonga reporting, see the :lsterisked components of Appendix Table 2. Adequacy of Reporting Activity-Community Coverage: The study plan did not include precise monitoring of completeness of community coverage. The idea of rigorous cross-checking of performance was culturally foreign to the people involved, and communication might have been threatened if performance requirements or controls had been introduced. Consequently, the study was based on confidence that the motivation to work cooperatively, and the innate conscientiousness of the cooperating individuals would get the job done properly. This trusting approach appeared to be the best one to adopt in the community under study, although, admittedly, it may not work as well in all localities.

124 TI1e reporting role was attractive to a segment of the community, particularly young women interested in health affairs. Some of these eventually became offical health aides to the itinerant nurse. At certain times, four or five women shared the work, apportioning community coverage among themselves. In general there was ample evidence of conscientious atti!ntion ·to the activity. On occasion a reporter moved elsewhere temporarily, to be near a hospitalized family member or to spend several weeks in summer camp. On each such occasion an alternate reporter was selected and trained by the first reporter to carry on the work. Analysis of the identification codes of the reports shows that all of the families of the community were involved in reports of illness during the total period covered by the survey. Of 291 persons listed as living in Savoonga in 1955-1957, 283 (97.3 °/o) were the subjects of illness reports. Six (2 °/o) individuals were absent, either attending boarding school or working on the mainland during all or roost of the period of study, and were not represented in illness reports. Two individuals listed on the village role (0.7 °/o) were unaccounted for; both were young children. It is possible that these persons may have been living with relatives elsewhere or had died in previous years and had not been removed from the roll of the living. It is likely that some illnesses were unrecorded at times, especially due to absences caused by short stays at summer hunting or winter trapping camps. The age-sex distribution of the population of Savoonga at the time of the study, excluding the 8 absentees, is illustrated in Figure 1. The unusual

YEARS

70 and v'!li!X

60 - 69

so - 59

40 - 49

30 - 39

20 - 29

10 -

0 - 9

FEMALE

45 Lio 35 30 2s 20 is 10 ~ 5 10 15 20 25 30 35 40 45 so 55

Fig. 1. Population pyramid - Savoonga survey population (Based on age estimate of 1956)

125 ..

20 Frequency 6.4% of Level of ·" Reported Illness

). ~%

z. ~l

Level of Reported Illnesses (Per Individual) Figure 2. Frequency of levels of numbers of illnesess Reported per individual during total time period population profile, compared to national standards (National Office of Vital Statistics, 1958) is quite evident, especially the disparity in proportions of the male and female components. Had the absentees been included in this -count, the sex group dispropor.tion would have been greaiter, since 7 of 8 absent or \llilaccountable persons were male. Figure 2 shows the frequency distribution of numbers of illnesses per person. The number of reports of illness generated per individual varied from 1 to 22. The median group was the one in which illness had been reported 7 times per person (The arithmetic mean was 7. 1). To check further on the possibility of reporting bias, the individuals who ha~ generated 12 or more reports during the 65 weeks were identified in relation to housd1o!d. Thirty-six individuals were found in this category (12.8 °/o of the popu!ation) distributed through 20 .(54 °/o) of the 37 households. Of these 20 households, only 6 had members who had served as reporters. On the basis of knowledge of the char:J.cter of households from other phases of the study, it was determined that in 16 households the operative factor was probably individual predisposition of the person concerned, due to emotional, physical or psychosomatic factors. Congestion and other adverse sanitational and hygienic factors were present in mos: households, but these were judged to be a major factor in producing exessive illness in only 4 households, where the illness rate was generally at high level in all individua:ls. The record of inclusion of all of the resident individuals and households in illness episodes, the normal-appearing frequency distribution of level of reported illness per individual, and lack of evidence of bias of coverage toward households of immedicate family or close relatives, support the

126 conclusion that the survey was equitable and practically total except for times when persons were temporarily residing elsewhere. Epidemiological Applications: The fundamental unit of this method of following health status is the report of individual illness. The individual case retains identity, even though it may serve as building block for construction of various kinds of statistics about the group. The key to retention is a unique identifying number--although the actual identity of the individual may be obscured, except to those concerned with provision of health care in the community. Unique identification of individuals was part of the data bank of the Savoonga epidemiological studies. Consequently, it is possible at this point, 15 } ears later, to construct a symptomatic picture of the illness experience of both individuals and the entire community. The unusual age and sex distribution of this population has been discussed above. Nearly 60 °/o of the population was under 20 years of age. Consequently, the illnesses typical of youth might be expected to dominate the epidemiological picture numerically. Table 5 shows the age-sex distribution of cases of illnes as shown in the records of the 64 weeks. The lower illness rates recorded were those for the »under 1 year» and the »10-19 year» age groups. A low rate is recorded

PERIOD: OCTOBER 3, 1955 TO !'fARCH 26, 1956 80

Number 60 of Illness 40 Reports zo

JA....'1CARY 23 TO MARCH ~O, 1957

1 2 3.:. 5 b 7 S WEHS

PERIOD: JULY 22 DECEMBER 31, 1957 100

80

Number 60 of Illness Reports

l 2 ) 4 5 6 7 8 9 10 12 14 it. 18 20 12 2<+ ;.;EEKS 11 1.3 15 17 J..~ ::1 23 Fig. 3. Weekly Frequency of reported illness Savoonga, 1955-57

127 also. for the males in the 20-30 year age group. Marked disparity between sexes with regard to illness rates was recorded only for the 20-29 year and the 60-69 year age groups. However, the small numbers in the latter age-group render rate estimates unreliable. The distribution of frequencies of illness per individual have been presented and discussed previously (Figure 2). Comparison of the data from Figure 3 and Table 5 indicates that the age groups showing average illness frequency greater than the arithmetic mean for the entire population were the following: 1-4 years, 5-9 years, 20-29 years (female), 40-49 years, 50-59 years (female) and all ages 60 years and above. Overall, slightly more illness was reported for females than for males. Comparison of the overall incidence of acute epidsodes of illness in Savoonga, as indicated by our survey, with the National Health Survey, acute conditions estimates of the nearest year (1962) reveals a great disparity. The National Health Survey indicated that the average incidence of acute conditions per individual per year, for rural non-farm population, was 2.4 (U.S. National HeaLth Survey, 1963). Our daita for •nhe Savoonga people, Who could be classed rural, non-farm population, indicated an incidence of 7.1 episodes per person for the 64 weeks, or an average of 5.7 per year. Scrutiny of individual illness reports indicate that about 10 °/o were duplicative; that is, reporting the same condition on successive weeks. Correction for that factor would place the average number of illnesses per person, per year at 5.1, which is still 2 times the rate for equivalent national population segment in the nearest year. A number of possible explanations for this disparity may exist; such as, 1. The National Health Survey interview system may expose less illness than the St. Lawrence study approach, due either to the specific orient::ttions of the NHS study or the community-interviewer interface. 2. The community-member reporter may be less discriminatory than the highly-trained interviewer, such a~ used by NHS, in acceptance of symptom information as indicative of illness. 3. Savoonga may, indeed, have experienced an illness rate twice that of the national average. Whether or not the foregoing suggested factors, or others, account for the difference in rates, it is obvious that the NHS approach to bathcring illness information is not equivalent to the community based approach described in this paper. Consequently, one should not expect the results to coincide. Frequency of illness was tracked by both family and individual and is summarized in Table 6. A number of relevant interpretations can be made from the data and analyses. First of all, no direct relationship was found between family size and amount of illness occurring within a family. The determinants of a »problem» family appeared to be (a) the proportion of »problem» individuals in it, (those with above-average illness records) coupled with (b) the actual numbers of illness episodes per »problem» individual. Table 7 presents the age-sex distribution of individuals who had greater

128 than average number of illness episodes -- 10 or over in this instance. The highest proportion of »problem» individuals was found in the group 60 years of age or older. After that in descending order of rank, came the, 40-49, 5 to 9, 1 to 4, 50-59, and 30 to 39 year age groups. While females, overall, provided the greater propomion of persons with above-average number of illness, the comparison was not uniform throughout all the age-groups. Tables Sa, b, and c illustrate the symptomatic history of three of the group of persons who had a high illness attack rate. Of the group of cases from which the illustrations were drawn, all had the usual acute episodes of upper respiratory disease, gastroenteritic episodes and influenza-like syndromes. Several had, in addition, symptoms, such as swelling of body regions, frequent chest pain, labored breathing, (asthma) and one h::id bloody urine which suggested the possibility of presence of renal disease. One patient did indeed die after showing symptoms suggesting urinary ·traat disease and possible cardiovascular involvement. As with most deaths on the island, the cause of death could not be confirmed by pathologica.J examination. In addition to delineating the problems of persons who are ill frequently, as above, the method can be used to define persons exhibiting symptoms which may signal serious, disabling or life-threatening disease. To illustrate this type of analysis, the Savoonga reports were screened for earache, ear discharge, pain-mastoid region, labored breathing, hemoptysis, and bloody urine. The individuals exibi1ting •those and frequency of occurrence are listed in code in Tables 9a-c. Another category of reporting included in the Savoonga work, which helped to define disabled or potentally disabled individuals, was that termed »existing conditions.» These were not current, acute, symptomatic illnesses, but conditions which had troubled or disabled individuals. This type of reporting was spontaneous, seemingly arising out of the desire of the afflicted individuals to have the reporters make a record of problems. A list of indi­ viduals with »existing conditions» is given in Table 10. In future development of the semiotic system and its application, greater emphasis will be placed on improvement and utilization of existing conditions reporting, coupling it with the reporting of the time loss or restricted activity caused by disability. Characterization of Community Experience-Frequency and Periodocity of Illness. As mentioned previously, chronological gaps are present in the surviving data from the St. Lawrence Island reporting activities. Continuous records remain of four periods of time; i.e., 29 weeks between early October, 1955 and late March, 1956; three weeks of June 1956; eight weeks from January into March 1957; and 24 weeks from late July to the end of 1957. A number of relevant and significant epidemiological facts emerge from analysis of the data, which confirm the utility of this community-based approach to epidemiological surveillance.

129 The data on prevalence of illness is represented graphically in Figure 3. In this assembly of graphs, the levels of illness shown in the period 23 January to 20 March (right centerground) and from weeks 10 thru 18 of the lower graph (22 July to 31 December), probably present the normal, endemic illness level - under 20 cases per wook or a weekly Taite of 7 l.l/o or lower. The actual arithmetic mean of the periods cited is 12 cases per week, or a rate of 4 9/o per week. By these standards, the illness picture of the entire first period 29 weeks, starting October 1955 throught March 1956, is characterized by successive epidemics. The second period of 3 weeks, 11-25 June 1956 (central left graph) was taken up by an epidemic with an t;xtremely sharp onset and high attack rate. It is unfortunate that the data preceding and following

WEEKLY PREVALENCE OF SYMPTOMS OF IUJIESS SA\100NCIA, 3 OCTOllER 19!11! TO Z?I Af'ftlL 19!56 "'

CORYZA ..

DIARRHEA

1-----"'"--~------~------J,."'

1--...... L..~------L..ll-- ..... __ ---ik.--.J,. "'

MALAISE

VOMITING

HEADACHE

l'lllNS IN sttOl.LDERS. BACK. HIPS Uo £XTREMl11ES

Fig. 4.

130 WEEKLY PREVALENCE OF SYMPTOMS OF ILLNESS SAVOONGA, II-25 JUNE, 1956

...------...,------~ 130

100

FEVER ·I 75 TRACHEOBRONCHITiS BONEACHE---i-+:v

NOSEBLEED--1--,_--- Z5

CORYZA-VOMITING_====t::~:==~;::::::::-i---.::::::::::::

DIARRHEA-""'-"------'------...::::1 0 WEEK I 2 3 ILLNESSES 45 140 29 Fig. 5. Note: Tracheobronchitis includes inflammation, tracheal (142-058), inflammation, bronchial (142-059), and coughing (122-).

WEEKLY PREVALENCE OF SYMPTOMS OF ILLNESS SAVOONGA, 23 JANUARY TO 20MARCH, 1957, CORYZA l:l DIARRHEA 1:1

FEVER 1:1

PHARYNGITIS 1:1 10 BRONCHITIS o._,,.....,..,."""'------~ 10~------, VOMITING

100~ HEADACHE ~

SHOULDER, BACK, HIP IOI ;;J

8 EXTREMITY PAIN 0 l.~===-il._----11•-·-· BONE PAIN

WEEK I 2 3 4 5 6 7 8 TOTAL ILLNESSES 10 18 19 5 13 15 22 20 Fig. 6.

131 this latter episode was lost, for the full impact of the disease, including the possibility of a »second wave» could not be gauged. The first 9 weeks of the fourth period (lower graph) were again an obvious epidemic period, as were also the last six weeks. The latter epidemic period was especially interesting because serologic evidence derived in other studies showed it to be caused by the »Asian» (A-2) Pandemic Influenza Virus (Reinhard, 1962). Again, the loss of records has prevented completion of the picture of the »Second wave» which appeared in weeks 23 & 24. Overall, in the 64 weeks, spread over 2 1/J years, no seasonal pattern was perceivable, nor was any other periodicity observed except the primary and secondary surges of epidemics cited in the preceding and following. Symptom-Complex Analysis: A record of the full range of symptoms o::curring week by week is not presented anywhere in this paper because of space limitations. Figures 4 thru 7 portray graphically the prevalences of symptoms of greater frequency in the four periods of the study. These provide the epidemiological information of qualitative importance. The first period (Figure 4) presents an amazing complexity of syndromes. The pattern of symptom prevalences and associations indicate that approximately 9 syndromes of differing symptomatic quality occurred in this relatively small and semi­ isolated community in a period of 29 wee/ks. The second graph, figure 5, represents one wave of a single-syndrome epidemic. Figure 6 represents a basic, nonepidemic illness picture, with the more common symptoms all occurring at low level. Figure 7, picturing the fourth period, indicates the occurrence of at least two, perhaps three influenza-like syndromes -- one occurring in the first three weeks of the period. A second flurry, occurring in weeks 7 thru 10 may be a distinct syndrome or the second surge of the earlier syndrome. The two surges of Influenza A-2 (Reinhard, 1962) occurred in weeks 18 through 24. A small flurry of an influenza-like syndrome in weeks 14 and 15 may have been the final episode of earlier epidemic illness or the primary cases of the later Influenza A-2 epidemic. For comparison, diarrhea, ear discharge and impetigo occurrence were included in this graph. Four small or moderate outbreaks of diarrhea occurred, which were not in configurations, prevalence-wise or chronologically, with the influenza! types of illness. Neither were these diarrhea symptoms restricted to single family groups. Ear dis­ charge symptoms tended to duster near the respiratory iillness symptoms, while symptoms of impetigo occurred sporadically, at low level and unassociated with other symptom complexes. In the absence of supportive laboratory work, particularly recovery of infectious agents, or detection of rising antibodies against such agent, a firm etiological diagnosis could not be made on the basis of the kinds of reports this approach provided, except in the case of injuries. Nevertheless the char­ acter and severity of the illness could be judged. Indeed, most syndromes

132 WEEKLY PREVALENCE OF SYMPTOMS Of ILLNESS SAVOONGA, 22JULY-31 DECEMBER, 1957

HEADllCHE

..i.us2. 3; 4 5 6 7 8 9 IO II 12 13 14 I~ 16 17

r!AL~ 21 IS 14 23 47 42 I~ 6 8 4 12 5 9 1Z 23 H :,0: 14 30 5"'

Fig. 7. of the type encountered in this study could be given a provisional, systemic classification. On a practical basis, community-based reporting of the type described provides sufficient description for the assay of community illness experience and to judge both community and individual needs for medical relief of acute, episodic disease. The age-sex distribution of epidemic disease is important to students of the natural history of disease as well as to persons concerned with planning health services, both for medical relief and for disease prevention. Table 11 shows the kind of data on age-sex prevalence of epidemic illness which can be derived from the reporting technique which is the subject of this paper. Periods A to H, listed in the table are specific epidemic periods. Their symptomatic characteristics of these episodes can be seen in Figures 4, 5 & 7. Peak prevalence of reported epidemic A occurred in the 40--49 year age

133 group; epidemic B had its highest prevalence rate in the persons over age 60. The prevalence of epidemic C was greatest in the 30-39 year group and epidemic D reached its higher age-specific rates in the children under 10 years 'of age. The rates in the older groups are not as reliable as those derived for the younger, because of the small numbers of older people (See Figure 1). Nevertheless, the target groups for the various epidemic illnesses are quite apparent; This type of analysis may be quite useful in selecting ,.high risk. groups for medical attention in efforts to reduce the impact of serious sequelae of acute disease, such as otitis media following acute upper respiratory disease. Symptom Association Nets and Likelihood Coefficients: One of the more modern approaches to analysis of the characteristics of disease is the construction of symptom association nets and the calculation of Bayesian association likelihood coefficients. The specific objective of most current studies in this area is the development of computer-based or computer-assisted medical diagnosis. In this paper, the discussion centers around proving the utility of a reporting system. But, admittedly, the eventual objectives, after computer­ ization of the rout~ne of analysis, include ithe development of computer programs to categorize disease entities in order to assist the process of epi­ demiological surveillance or the processes of signaling the kind of medical relief required by epidemics or single cases of illness. A detailed presentation of symptom association analyses of the various syndromes described in reports during the course of this study will be held

128 -- 083

218 -- 137 127 ---

Digits along association lines indicate naaerical frequency of linkagea

Fig. 8. Symptom association net of epidemic illness, weeks 27-29, first period

134 Frtc>quen.:y of linkage not shown

Fig. 9 a. Symptom association net, epidemic of June, 1956, period 2

( ) ~--~ ( ) ( ) ( ) ( )

Association frequencies (~---~) oi 3 or less are deleted. (~---~ - .__,) ~--~)

~11: - - Ci68

Fig. 9b. Symptom association net:, epidemic of June, 1956, period 2

135 for a future paper. A few nets will be shown here in order to, (a) demonstrate the symptomatic detail which can be derived by this kind of reporting, (b) show how salient symptomatology can be discerned and (c) illustrate how syndromes occurring concurrently can be discerned and differentiated. In the presentation here, Bayesian association likelihood coefficients are not presented, but will be held for a future epidemiologically-oriented interpretation of the study. Figure 8 respresents the syndrome present in a relatively minor epidemic occurring in weeks 27-29 of the first period. (See also Figure 4). The ,.core,. symptom was diarrhea (118), the symptom of second rank in frequency was vomiting (166) and of third frequency, headache (218, 602-007). In 23 episodes, diarrhea occurred without reported association with other symptoms. Note the existence of four subdivisions of the association net. One links diarrhea (118), and abdominal pain (218--083). A second links diarrhea (118), headache(218, 602--007), bone pains (218--137) and ibadk pain (218--074). The •third 1~111ks diarrhea (118), vomiting (166) and bilateral 1eg pain (218, 503-125). The foul"t:h links vomiting (166), coryza (113--007), and fever (127). In •two instances vomiting (166) was :linked only to di,fficult bre~hing (105--323) aind once i>t was linked to lower abdominal pain (218--087). A much more complicated net is shown in Figure 9a. This epidemic was the one characterized by fever (127), tracheobronchitis (142--058), (142--059) and coughing (112---), boneache (218--137), and headache {218, 602--007) {See Figure 6). If, in order !to clarify 1the picture and ito demonstrate symptoms of major importance, one eliminates the symptoms with numerical frequency of 3 times or less, a less complicated association net such as that shown in Figure 9b is produced, enabling the clear delinia;tion of symptomatology of higher frequency. A particularly interesting association net is that produced from analysis of the Asian Influenza epidemic. The symptomatology of the weeks 18 to 21 of the fourth period (See Figure 7) is represented in Figure 10a. Two symp­ tomatic phases of this epidemic are apparent; i.e., one in which coryza (113 --007) is involved and one in which it is not involved. If one elimina:tes the various symptoms of low frequency, the picture is greatly simplified (Figure 10b). The »core» symptoms were headache, coryza, bone pains, fever, pharyngitis and vomiting. Figures 11 and 12 demonstrate symptom association nets in which the concurrent occurrence of distinct syndromes is rather clearly indicated. Figure 11 shows two symptoms -- headache (218, 602--007) and boneache (218, 602-- 137) which are common to two syndromes. The "core" symptoms of one symptom syndrome (solid lines) is coryza (113--007) and of the other (broken lines), diarrhea (118---). Figure 12 illustrates two common symptoms, slight fever (127-124) and headache (218, 602-007) whioh are associated in one syndro-

136 128 (Phase plus 113 -- 007)

218,&02-071

-'1 {Phase minus 113--0 ;~~~;{ ;:i. ::f' • 118---

Item cited in both phases

Fig. 10 a. Symptom association net, "Asian influenza" epidemic, fourth period

(_~) _____) Association link.age (_~) frequencies of 3 or less are eliminated. ( _____) (~_)

120 -- 080 (__ ) ( ) ( )

142 -- 037 218,602-ll) 166 ---

( ) ( ) __ __ 134 - - 018 Fig. 10 h. Symptom association net, "Asian· influenza" epidemic, fourth period.

137 11 <~) ( 166 - - - )--S:-( 118 - - - )- _._ (134 (. } I ;:1_ ------::::*' \!27 ------; I - - - - / L - 1 _,,-- - ~ ,.1 I , ' I'.__ - - - ~ /3 _,, _,, / ;-1 /of I ,,. , ~---- I ,. )_,, // ( 148 ); _, \I I / / ,, ,, I ,. ,I ..... \..... I' / ; /

218,602-083 105,323 - -

238 - - -

218 - - 040 218. 514-054

c167 105 - - 338

128 - - 083

- 080

Digits along association lines indicate numerical frequency of linkage.

Fig. 11. Symptom association net, epidemic of weeks 16 and 17, first period

(120 --os1) {us --on) I I \

Digits along &ssociation lines indicate nuaerical frequenc.y of linkage Fig 12. Symptom Association net epidemic illness during weeks 14 and 15, first period

138 me wi:th diarrhea (118---), vomiting (166---) and gastric discomfort (120--080). In the other syndrome these common symptoms are associaited with pharyngitis (142--037), whioh in turn is associaited with coryza {113---007), abdominJ.l dis­ comfort (120--087), lower chest pain {218--073) and bilateral leg pain \218, 503-125). Epidemiological Utilization: The original field study was not conducted in coordination with a medical services agency. Indeed, at the time the work was done, the agency responsible for health of Alaskan Natives was not yet developed to the level at which it could respond directly to emergent needs of individual remote communities. The reports were made available to the itinerant nurse as well as the school teachers, for their use or interest, but no direct medical intervention was programmed into the effort.

Two ~alient epidemiological uses of the system were made. One was the study of the Asian Influenza epidemic of late 195 7 (Reinhard, 1962), referred to previously. The other use of considerable utility was the definition of a mumps epidemic occurring during the first half of 1957. In Savoonga, the epidemic occurred in Apri,J, May and June of 1957. The reporits for •that period were not available to be presented here. Reports of the illness first reached our laboratory through medical service channels, and the disease had been called infectious mononucleosis. When the lay reporter accounts reached us, we reviewed the cases listed and found parotid swelling, male orchitis and female mastitis recorded in the group of persons involved in the slowly­ moving epidemic. This meant to the medical epidemiologist that the disease was indeed mumps. Thus forewarned by -nhe repoI1ting, we mounited a field investigation, appropriately equipped, and were able to document the oc­ currence of a remarkable epidemic of mumps occurring in a population with practically no acquired immunity (Philip, Reinhard and Lackman, 1959).

Discussion

Although the original work reported here took place in arctic climes, the thrust of the message of this paper is that the method is applicable in almost any defined population group, provided that the need and desire for reporting disease experience are present. This is a »grass roots» approach to epide­ miological surveillance. It is unfortunate that necessary restraints on the size of this paper prevent a more extensive discussion of the efforts directed towards establishing and maintaining community involvement. In the authors opinion, congenial and effective community liaison and involvement of community members in such a program is of greater concern than technical matters.

139 To recapitulate concisely, the methodologic characteristics of original re­ pordng activities were the following: 1. An established semantic base of symptom and simple syndrome descrip­ tors, known and agreed upon by all active participants in illness reporting. The understanding of the semantic base was strenthened by definition of terms in the common national and the local language, as well as technical language. 2. Written reporting of illness, case by case, coupled with identification of the individual, sex, age, chronology of illness and symptoms observed by the reporter or household respondent. 3. Community canvass weekly. 4. Central assembly and analysis of reports. 5. Continuing critique, at the time of field visits by the investigator. 6. Feedback of investigative results to the community workers, leaders and people. The results of the reporting study support the following conclusions: 1. Total disease experience of communities, or of selected community segments can be document~d reliably by lay reporters who are aware of nomenclature requirements and are provided with a systematized means of record-keeping and trained in its use. 2. Symptomatic description of individual cases can be rendered in sufficient detail by lay reporters to characterize the nature of most cases of disease adequately for health surveillance purpose, as well as to delineate symptom association nets of illnesses of high prevalence. 3. Reporting of illnesses at weekly intervals is adequate to measure and to characterize epidemic episodes. 4. Symptom-complex reporting of illness is competent to describe and measure seasonal or other sh ifts in disease patterns, to identify com­ munity problems and to indicate high-risk individuals or families. 5. The operation of such a reporting system in a community is effective under the following conditions: (a) The total community or portion sampled is aware of the reporting activity and its objectives. (b) The community, and particularly its leadership groups, has suffi­ cient interest in the objectives of the reporting to motivate accep­ tance of, and cooperation with, the reporting activity. (c) The reporters (or interviewers) have widespread community accep­ tance as recipients and custodians of confidential information, and, in bilingual settings, are completely familiar with the dominant language of the community as well as the colloquial version of the national language.

140 (d) The reporters have a keen interest in health affairs. (e) Selection of reporters is based largely on community leadership advice and selection, although some criteria for selection are establisihed in conference with the leadership 1to insure adequate performance. (f) Positive correlation is established between the technical and common language terms for symptom descriptors and modifers, as well as other reporting terms, and the correlations are familiar to all active participants. (g) The reporters and interested leaders receive either formal or informal training in terminology, the mode and periodicity of reporting, the desired degree of descriptive precision, the construction of the framework of symptomatologic description, and other factors related to the generation of reliable information. They are informed about the intended uses of the data generated in the development of improved health services. (h) The reporting system is eventually linked perceptibly to the impro­ vement of health services to the community.

The author is familiar with the history of two other reporting act1v1t1es set up in remote villages in Alaska subsequent to the work reported here. One was an experimental system, carried out in the years 1958-1960 in St. Lawrence Island, which employed 20 stereotyped symptom or condition des­ criptors. While this system did detect and quantify illness, it failed to be epidemiologically relevant, probably because of the reduced numbers of symptom descriptors coupkd with the inclusion of symptoms or conditions of low frequency. An extensive disease ... reporting trial was set up by an agency of the State of Alaska in the Yukon-Kuskokwim Delta, involving 11 villagP.S in the years 1960 thru 1962. At termination of the study, evaluators found a wnsiderable amount of variability in quality of the data and ascribed it to variability of reporter performance and semantic problems, coupled with lack of close, critical liaison between the supervisory and working level, which prevented good quality control. The evaluators of the study felt the general approach was potentially useful, but that a developmental study should involve less communities and more rigorous quality control (Kester). The later work reported in this paper consisted of (a) expansion and con­ struction of the semiotic base, (b) codification of the descriptor-modifier array, (c) development of machine-sort techniques of analysis, and (d) develop­ ment of concepts to assist in future computerization of the processes of symptom-complex, illness-reporting data acquisition, storage, rt:trieval and analysis. While the later work was designed to improve the method for

141 community-based reporting of illness, it also was oriented toward serving the following health informational objectives: 1. Quantifying the amount and characterizing the cause of time loss due to disability and restricted activity occurring in the community, outside of health care facilities. 1(Similar, but not equivalent to the National Health Survey). 2. Screening culturally or geographically isolated population to determine the kinds of services needed, as well as the persons requiring attention, to assist in planning the provision of services. 3. Documenting individual cases of illness with some description of severity, coupled with evidence of kind and source of medical relief obtained, (if any). 4. Training auxiliary health services personnel in, (a) the recognition and recording of signs, symptoms and tests, (b) the employment of symptom­ procedure work flow to indicate appropriate treatment or referral of cases according to presenting symptoms, (c) the reporting of cases to physicians to obtain direct advice for the treatment or referral of problem cases, and ( d) the documentation of medical histories of individuals without establish­ ment of diagnosis. 5. Patient triage for referral to appropriate levels of services. This would require the application of diagnostic logic trees and procedure work flow to the semantic base. 6. Automated, codified, transmission, translation and documentation of in­ formation on illness, through electronic or electro-magnetic media. In general, if the study reported here assists or stimulates the development of improved means of deriving pertinent information on the health needs of people, its objectives will have been fulfilled. This is particularly true if greater community involvement in defining health problems is achieved, plus a sparing effect on costly professional manpower.

Acknowledgements

This study has been carried out intermittently over a period of many years and has benefited from many conitributors. I wish :to acknowledge, with great gratitude, the valued assistance and contributions of the following persons and groups: (a) The Councils and Health Committees of the Villages of Savoonga and Gambell, Alaska, (b) The Reporters of Savoonga; Mrs. Helen Jackson, Miss Dorothy Kava, Miss Harriet Penahyah, Miss Janet Kingeekuk, and Mrs. Lucille Wongittillin, (c) The Reporters of Gambell; Mrs. Florence Melegwotkuk, Mrs. Myrtle Booshu, Miss Irene I worrigan and Mrs. Grace Slwooko. The following agency workers contributed by their interest and moral support: Missionary & Mrs. Lowell Cambell, Missionary & Mrs. Authur French (Mrs.

142 French also served as Public Health Nurse), Miss Mary Rowley, Senior Public Health Nurse, Mr. & Mrs. Wm. Benton, B.I.A. teachers, Mr. & Mrs. Russell McLaughlin, B.I.A. teachers, and Mr. & Mrs. Julius Harkey, B.I.A. teachers. The advice and interest of a former colleague, Dr. Robert N. Phillip w;;.> of great assistance in the latter part of the original work. Mrs. Rose Feltz and Mrs. Marie Padget provided clerical support for the initial reporting work. In 1the recent phase of 1the wol'lk, Mr. Gary Jaeger and Mr. Be11t Griego provided major assistance in. dev"elopment of the semiotic array. Mrs. Naoma Greenwalt programmed and carri·ed out tihe coding, cardpunching and rnachine­ sort work and compiled the tables of basic data. Mrs. Louise Burbank provided the essential typing assistance in preparation of manuscripts. The original work was supported by the Arctic Health Research Center, DGHS, BSS, U.S. Public Health Service. No note of acknowledgement would be complete without expressing deep gratitude to the people of Gambell and Savoonga for their genial support and friendly assistance in the work, and particularly for their acceptance of an itinerant scientist, helping him to become more deeply acquainted and further intergrated into the community at each succeeding visit.

Bibliography

BEESON, P. B., McDERMOTT, W., "Cecil-Loeb Textbook of Medicine." 12th Ed., W. B. Saunders Co., Phila., (1967). DoUTHWAITE, A. H., "French's Index of Differential Diagnosis." 9th Ed., William & Wilkins, Baltimore, (1967). GORDON, B. L., et.al., "Current Medical Information and Terminology." 4th Ed., American Medical Assoication, (1971). HUGHES, CHARLES C., "An Eskimo Village In The Modern World," Cornell University Press, (1960). KESTER, F. E., Division of Vital Statistics, Alaska Dept. of Health & Welfare Juneau, Alaska. Personal Communication. KRUPP, M. A., CHATTON, M. ]., & MARGEN, S., "Current Diagnosis and Treatment." Langt Medical Publications, ( 1971 ). LYGHIT, C. E., et.al., "The Merck Manual." 11th Ed., Merck, Sharpe & Dahme, (1966). National Office of Vital Statistics, U. S. Dept. Health, Education and Welfare. "Vital Statistics of the United States, (1956). Vol. 1., Tables M. & N., U. S. Govt. Printing Office, Washington, (1958). PHILIP, R. N., REINHARD, KARL R., & LACKMAN, D. B., "Observations on a Mumps Epidemic in a 'Virgin' Population." American Journey of Hygiene, Vol. 69, # 2, pp. 91-111, (March 1959). . REINHARD, KARL R., "Demographic and Preliminary Epidemiological Studies of the People of St. Lawrence Island, Alaska," Presented in the Medical and Public Health Section, 7th Alaska Science Conference, Juneau, Alaska, (August 1956). REINHARD, KARL R., "The Development of Profiles of Medical and Epidemiological History in Two Eskimo Communities." Presented in the Medical Science Section, t;th Alaska Science Conference, (September 1964 ). REINHARD, KARL R., "Development of a Community-Based, Symptom Complex, Illness Reporting System for Surveillance of Health Status." Presented at the Second Inter­ national Symposium on Circumpolar Health, Oulu Finland, (June 1_97}); also _at 30th Annual Meeting of the U. S. - Mexico Border-Health Assoc1at1on, Chihuahua, Mexico, (April 1972). . . REINHARD, KARL R., "The Serologic Sequelae of an Influenza A-2 Ep1dem1c Modified by

143 Intercurrent Vaccination in an Insular Eskimo Population Group." journal of Im­ munology, Vol. 88, #5, pp. 551-555, (May 1962). U. S. National Health Survey, "Acute Condition-Incidence and Assoicated Disability-United States, July 1961-July 1962." National Center for Health Statistics, Publication Seriers 10, #1, Table 19, p. 25. U. S. Govt. Printing Office, (May 1963). W1NTROBE, M. M., et.al., "Harrisons Principles of Internal Medicine." 6th Ed., Blakiston­ McGraw-Hill, N. Y., (1970). YATER, W. M., OLIVER, W. F., "Symptom Diagnosis," 5th Ed., Appleton-Century-Crofts, N. Y., (1961).

TABLE I: Example of Symptom and Medical Condition Descriptors m Technical English, Common English and local language (Western Eskimo)* Technical English Common English Cough Cough Cough, Severe Bad Cough Pertussis Whooping Cough Pox (Same) Impetigo (Same) Pneumonia (Same) Diarrhea with (Same) Stomach Ache Di1rrhea without (Same) Stomach Ache Stomach Ache (Same) Headache (Same) Toothache (Same) Fever (Same) Vomiting (Same) lymphadenopathy Swollen Glands Pharyngitis Sore Throat Otitis Sore Ears Chest Pain (Same) Incision Cut Incision, Large Big Cut Epistaxis Nosebleed Rabies or Drunkenness (Same) Swelling (Same) Convulsion (Same) Boil (Same) Dumbness (Same) Deafness (Same) Blindness (Same) • Phonenc code taken from "Ouciine of Linguistic Analysis", B. Block & G. L. Trager, Linguistic Society of America, 19·12

144 TABLE 2: Example of Symptom Descriptions in Digital Code and Corresponding Words 113-007 Coryza, head (head cold) 218, 602-007 Pain, continuous, head (headache) 218, 602-014 Pain, head, occipital (occipital headache) 142-037 Inflammation, pharynx (sore throat) 118- Diarrhea (unqualified) 127, 116- Fever, moderate 218, 602-137 Pain, continuous, bone, general (boneache) 105, 308 Breathing, difficult or labored 166- Vomiting (unqualified) 128-080 Flatulence, gastric {gas on stomach) 128-083 Flatulence, abdofuin~l (gas in abdomen) 120-083 Discomfort, abdominal 218-084 Pain, back lumbar (middle back pain) 162, 514-087 Swelling, right inquinal (swelling, lower right abdomen) 218, 602-048 Pain, continuous, ear (earache)

TABLE 3. Frequency of citation of more common symptom descriptors. Headache 807 Labored breathing 45 Neck pain 14 Coryza 795 Abdominal 33 Abdominal pain 12 discomfort Fever 519 Leg pain 32 Pain, unspecific 12 Boneache (general 339 Ear discharge 30 Papule (Scabies) 11 nonspecific) Diarrhea 285 Impetigo 30 Burrow (Scabies) 11 Vomiting 278 Eye inflammation 29 Itching (Scabies) 11 Sore throat 246 Shoulder pain 26 Inflammation (Scabies) 11 Bronchitis 195 Coughing 23 Right Inguinal pain 10 Tracheitis 193 Toothache 22 Total, these symptoms 4491 95 % Nosebleed 81 Flatulence, gastric 21 Total, all symptoms 4730 100 % Discomfort, gastric 73 Pain, general, 20 Difference 239 5% nonspecific Chest pain 68 Flatulence abdominal 16 Total items used 343 Backache 54 Inflammation, 16 Total items cited 38 buccal Earache 47 Inflammation, 15 % use over 10 times 11 % gingival Nasal discharge 46 Eyeache 15

TABLE 4. Frequency of Use Components of Symptom Descriptor Array. Code Class Description # in array #used % Symptom Descriptors 1 General Medical 74 30 40.5 2 Neurological & Sensory 61 5 8.2 3 Mental-Social-Behavioral 71 0 0.0 4 Lesions, Non Traumatic 31 8 25.8 5 Lesions, Traumatic 32 7 21.9 Total 269 so 18.5 Total excluding Code 3 199 50 25.1 Common Modifiers 148 31 20.9 Anatomic Descriptors 139 69 49.6

145 TABLE 5. Age and sex distribution of illness, Savoonga, total reporting period. Male Female Male & Female #:: of Group Sex- Age- #of Sex- Age- #of Sex- Age- Ill- Size spec.* spec.* Ill- Group spec.* spec.* Ill- Group spec.* spec.* nesses rate rate nesses Size rate rate nesses Size rate rate O' u;, 0' /o ,o ~lo % /o % Under 1 year 84 20 8.4 68.3 39 9 3.9 31.7 123 29 6.1 100.0 Age/Sex 42.0 43.3 42.4 specific rate ( % ) 1 to 4 years 178 21 17.8 56.5 137 16 13.7 43.5 315 37 15.7 100.0 Age/Sex 84.8 85.6 85.1 specific rate t % ) 5 to 9 years 112 11 11.2 43.2 147 17 14.7 56.8 259 28 12.9 100.0 Age/Sex 101.8 86.5 92.5 specific rate ( %) 10 to 19 years 211 40 21.1 51.1 202 31 20.2 48.9 413 71 20.6 100.0 Age/Sex 52.8 65.2 58.2 specific rate ( % ) 20-29 years 146 35 14.6 44.9 179 23 17.9 55.1 325 58 16.2 100.0 Age/Sex 41.7 77.8 56.0 specific rate ( % ) 30-39 years 82 10 8.2 63.1 48 6 4.8 46.9 130 16 6.5 100.0 Age/Sex 82.0 80.0 81.3 specific rate ( % ) 40-49 years 78 10 7.8 41.5 110 12 11.0 58.5 188 22 9.4 100.0 Agel Sex 78.0 91.7 85.5 specific rate ( %) 50-59 years 49 7 4.9 42.6 66 6 6.6 57.4 115 13 5.7 100.0 Age/Sex 54.4 110.0 88.5 specific rate ( % ) 60-years & Over 59 7 5.9 44.4 74 6 7.4 55.6 133 13 6.6 100.0 Age/Sex 84.3 123.3 102.3 specific rate ( % ) Overall 1001 161 100.0 1002 126 100.0 2003 287 100.0 Age/Sex specific rate ( % ) 621.7 79.5 69.8 * specific

TABLE 6. Distribution of families according to average rate of illnes per person Savoonga - total survey period.

Average Av. 4~ of Range of Proportion #Families Family Family Tora! # Toni# Illnesses Illnesses Persons in Group s:ze Range Size Of persons Of Illnesses Per Persons Per Persons Above Average*

3 4 to 13 7.0 21 75 3.6 1 to 10 0.05 4 4 to 8 6.3 26 111 4.2 1 to 10 0.04 8 4 to 12 7.5 60 325 5.4 1 to 18 0.25 2 6 to 8 7.0 14 91 6.5 2 to 10 0.50 9 6 to 15 9.7 88 650 7.4 1 to 16 0.47 3 6 to 10 7.7 23 195 8.5 1 to 24 0.48 3 5 to 11 7.7 23 211 9.2 2 to 20 0.74 3 7 to 11 8.7 26 270 10.4 5 to 19 0.73 1 4 4.0 4 45 11.3 4 to 16 0.7'i 1 2 2.0 2 30 15.0 11 to 19 1.00

37 2 to 14 7.7 287 2003 7.0 1 to 24 0.41

146 TABLE 7. Age-sex distribution of individuals with episodes of illness numbering higher than average (10 or more reported episodes during entire survey period).

Male Female Male & frmale :#sub- Pop. * Rate ( % ) fl sup- Pop. *Rate ( % ) ti sup- Pop:'· R..: :c ( % ) jeers Size jeers Size jeers Size By By By By By By Sex Ag~ Sex Age Sex A~ Under 1 year 4 20 14.3 80.0 9 2.4 20.0 5 29 7.1 100.0 Rate by sex/age ( % ) 20.0 I I.I 17.2 1 to 4 years 6 21 21.4 50.0 6 16 14.3 50.0 12 37 17.1 100.J Rate by sex/age ( % ) 28.6 37.5 32.4 5 to 9 years 6 11 21.4 54.5 5 17 11.9 45.5 11 28 15.7 100.0 Rate by sex/age (%) 54.5 29.4 39.3 10 to 19 years 2 40 7.1 28.6 5 31 11.9 71.4 7 71 10.0 100.0 Rate by sex/age ( % ) 5.0 16.1 9.9 20 to 29 years 35 3.6 11.1 8 23 19.0 88.9 9 58 12.9 100.0 Rate by sex/age ( % ) 2.9 34.8 15.5 30 to 39 years 10 10.7 75.0 6 2.4 25.0 4 16 5.7 100.0 Rate by sex/age ( % ) 30.0 16.7 25.0 40 to 49 years 2 10 7.1 20.0 8 12 19.0 80.0 10 22 14.3 100 Rate by sex/age ( % ) 20.0 66.7 45.5 50 to 59 years 7 3.6 25.0 3 6 7.1 75.0 4 13 5.7 100.0 Rate by sex/age(%) 14.3 50.0 30.8 60 & Over 7 10.7 37.5 5 6 11.9 62.5 s 13 11.4 100.0 Rate by sex/age ( % ) 42.9 83.3 61.5 Overall 28 161 100.0 40.0 42 126 100 0 60.0 70 287 100.0 100.0 Rate by sex/age (%) 17.4 33.3 24.4

<· Population

147 T ABLl' 8 A Illness resume' individual 26-08, male, mid-range age 11 years

Wecl,: Year Symptoms

3 1955 Coryza 4 1955 Coryza 7 1955 Pharyngeal inflammation, coryza 10 1955 Coryza, labored breathing (asthma) 1 1956 Labored breathing (asthma) 3 1956 Coryza, labored breathing 5 1956 General aches & pains, malaise 6 1956 Diarrhea, coryza, boneache, headache 9 1956 Coryza, labored breathing (asthma) 10 1956 Coryza 13 1956 Labored breathing (asthma) 16 1956 Fever, headache, boneache, tracheobronchitis 20 1956 Labored breathing 3 1957 Coryza, labored breathing 7 1957 Coryza, labored breathing 10 1957 Coryza, labored breathing, fever 14 1957 Coryza, labored breathing 17 1957 Labored breathing, coryza, fever, backache 21 1957 Diarrhea, gastric discomfon, coryza, labored breathing 23 1057 Fever, headache 26 1057 Coryza, labored breathing

TABLE 8 B Illness resume' individual 26-02, female, mid range age 50 years

Week Year Symptoms

I 1955 Headache, coryza, pharyngeal inflammation 3 1955 Pharyngeal inflammation 4 1955 Gastric flatulence, gastric discomfort 6 1955 Coryza 9 1955 Pain, right abdomen (lumbar region) 11 1955 Discomfort, right abdomen 12 1955 Right shoulder pain, pain right arm 4 1956 Pain, right arm and hand 5 1956 Coryza, abdominal discomfort, headache 6 1956 Vomiting, diarrhea, coryza, headache, boneache 9 1956 Coryza 10 1956 Coryza, 11 1956 Abdominal flatulence 14 1956 Right shoulder pain, pain right arm 16 19% Fever, headache, boneachc, tracheobronchitis 6 1957 Left shoulder pain 8 1957 Headache, coryza 10 1957 Coryza, headache, boneache, backache, inflamed pharynx 11 1957 Right Shoulder Pain 12 1957 Vomiting, diarrhea, headache, abdominal discomfort 23 1957 Fever, headache, gastric discomfort, diarrhea, vomiting

148 TABLE 8 c Illness resume' individual 13-09, male, age 67

Week Year Symptoms

2 1955 Headache, eyeache 3 1955 Headache, coryza 4 1955 Severe headache, low back pain, coughing 5 1955 Headache, pain upper right leg 6 1955 Swelling right leg, headache, abnormal urine 7 1955 Pain and stiffness in back, shoulders, chest, arm & hands & hips; swelling bot'1 arms, bloody urine 8 1955 Sore throat, chest pain, infrascapular pain, pain in both feet 9 1955 Sore throat, chest pain, infrascapular pain This person died soon after bst report.

TABLE 9 A Sc. Lawrence study - frequency of selected critical symptoms by individual Symptom - (218, 602-048) Earache

Week & Year Week & Year Individual of Occurrence Individual of Occurrence 01-02 10-56 16-01 06-56 01-06 17-56 16-04 27-57 *Ol-08 09-56 16-05 06-56 05-02 10-55 17-03 17-56 05-04 11-55, 07-56, 17-56 18-04 09-56 08-06 06-56 19-02 07-56 09-03 09-56 09-04 06-55, 18-56 21-03 31-57 09-09 18-56 22-04 09-56 11-03 06-57, 30-57, 31-57 26-:5 31-57 12-03 01-55 12-05 08-55 27-01 09-56 27-07 31-56 13-01 05-56, 09-56 14-04 02-55, 31-57 28-03 09-56 14-05 09-56 14-06 09-56 * Also listed for labored breathing. 14-07 15-57 15-10 05-56

149 TABLE 9 B St. Lawrence study - frequency of selected symptoms by individual Symptom (119-048) Ear Discharge

Individual Week and Year of Occurrence 01-11 01-56 06-09 28-57 11-12 03-56, 11-57, 12-57, 14-57, 15-57, 17-57 12:_02 02-55, 18-57 13-07 25-57 14-10 23-57 16--07 30-57 17-03 09--56 17-04 14-57, 17-57, 19-57 19-04 13-56 21-12 28-57, 30-57 21-13 26-57, 27-57, 28-57, 29, 57 26-07 17-57 27-10 03-57 32-09 09-56 33-02 31-57

TABLE 9 c St. Lawrence study - frequency of selected symptoms by individual Symptom - (105-323) Labored Breathing

Individual Week & Year of Occurrence 01-03 05-55, 09-55, 11-55, 14-57, 16-57, 17-57, 22-57, 24-57 *01-08 09-56 02-01 26-57, 27-57, 28-57 04-01 15-57 06-08 27-57 11-11 17-57 15-14 26-57, 31-57 23-04 16-56, 17-56 26-08 10-55, 01-56, 03-56, 09-56, 20-56, 03-57, 07-57, 14-57 22-57, 30-57 27-10 31-57 28-05 28-57 28-06 31-57 30-02 16-57 Symptom - (165-203) Bloody Urination 13-09 06-55, 07-55 Symptom- (132---) Hemoptysis 04-01 27-57 06-03 07-56 13-03 03-56 32-05 06-56

150 TABLE 10 Savoogna - existing conditions

Individuals Condition Code 01-03 Asthma 05 03-08 Bad teeth (dental disease} 17 05-06 Heart trouble (cardiovascular disease, cardiac) 17 06-03 Asthma 05 07-C2 39 08-02 Poor eyes (vision, blind or dim, partial, bilateral) 40 09-04 Heart trouble (cardiovascular disease, cardiac) C7 10-01 40 12-02 38 13-01 Deaf, right ear (hearing loss, complete, single ear} 37 13-09 Deaf, both ears (hearing loss, complete, bilateral) 38 14-01 Poor eyes (vision, blind or dim, partial, bilateral) 40 14-03 Bad teeth (dental disease) 17 14-04 (Ear disease) 23 14-05 Bad teeth (dental disease) 17 14-06 Bad teeth (dental disease) 17 14-08 Poor eyes (vision, blind or dim, partial, bilateral) 40 14-09 Poor eyes (vision, blind or dim, partial, bilateral) 40 Tuberculosis also 32 15-11 Bad teeth (dental disease) 17 15-12 Bad teeth (dental disease) 17 20-02 Heart trouble (cardiovascular disease) 07 20-03 Heart trouble (cardiovascular disease) 07 20-07 Heart trouble (cardiovascular disease) 07 21-03 Poor eyes (vision, blind or dim, partial, bilateral) 40 22-06 Poor eyes (vision, blind or dim, partial, bilateral) 40 26-08 Asthma 05 31-02 Blind, left eye (vision, blind, complete, single eye) 41 31-03 Poor eyes (vision, blind or dim, partial, bilateral) 40 32-05 Bad teeth (dental disease) 17 32-06 Bad teeth (dental disease) 17 33-01 Bad teeth (dental disease) 17 34-02 Bad teeth (dental disease) 17 34-04 Tuberculosis 32 35-01 Blind (vision, blind, complete, bilateral) 42 35-02 Heart trouble (cardiovascular disease, cardiac) 07 36-05 Bad teeth (dental disease) 17

151 TABLE 11 Age group distribution of reports of illness in epidemic periods

Under 5 5-9 10-19 20-29 30-39 40-49 50-59 60 Years Years Years Years Years Years Years Over Total

(A) First Period, weeks 1-2 # illnc~ses 16 13 33 30 10 18 5 7 132 Age-specific rate for episode 0.24 0.46 0.46 0.52 0.62 0.82 0.38 0.54 0.46 (B) First Period, weeks 6-9 4~ illnesses 18 16 32 24 12 18 11 14* 145 Age-specific rate for episode 0.27 0.57 0.45 0.41 0.75 0.82 0.84 I.OS 0.51 (C) First Period, week 10 # illnesses 8 4 10 11 4 3 4 45 Age-specific rate for episode 0.12 0.14 0.14 0.19 0.25 0.13 0.08 0.31 0.16 (D) First Period, weeks 21-22 illnesses 40 17 24 8 4 6 4 5 108 Age-specific rate for episode 0.60 0.61 0.34 0.14 0.25 0.27 0.31 0.38 0.38 (E) Second Period, (3 weeks)# illnesses 44 26 56 35 11 21 10 10 213 Age-specific rate for episode 0.66 0.92 0.79 0.60 0.69 0.95 0.77 0.77 0.75 (F) Fourth Period, weeks 1-3 #illnesses 16 3 11 11 2 6 3 4 56 Age-specific rate for episode 0.24 0.11 0.15 0.19 0.13 0.27 0.23 0.31 0.20 (G) Fourth Period, weeks 7-10 illnesses 24 8 23 30 14 16 8 5 128 Age-specific rate for episode 0.36 0.29 0.32 0.51 0.88 0.72 0:62 0.38 0.45 (H) Fourth Period, weeks 18-24 illnesses 42 33• 37 20 4 7 5 11 159 Age-specific rate for episode 0.64 1.17 0.52 0.34 0.25 0.32 0.38 o.85 0.55 Population 66 28 71 58 16 22 13 13 286 • undoubtedly uncludes double reports (report on same individual in successive weeks)

Appendix TABLE 1. Disease categories considered in development of expanded descriptor array.

Name Icda code Name Icda code Typhoid Fever 001 Moniliasis 112 Enteritis 002-003 Actinomycosis 113 Bacillary Dysentery 004 Coccidioidomycosis 114 Bacterial Food Poisoning 005 Histoplasmosis 115 Amebic Dysentery 006 Trichiniasis 124 Simple Acute Diarrhea 009 Hookworm 126.9 Pulmonary Tuberculosis 011 Acariasis 127.0 Tuberculosis of Meninges 00} Pin worm 127.3 Tuberculosis of Intestines 014 Trichomonas Vaginalis Inf. 131 Plague 020 Pediculosis 132 Tularemia 021 Scabies 133 Anthrax 022 Simple Goiter 240 Diphtheria 032 Thyrotoxicosis 242 Pertussis 033 Diabetes Mellitus 250 Scarlet Fever 034 Vitamin A Deficiency 260 Meningococcal Inf. 036 Thiamine Deficiency 261 Bulbar Poliomyelitis 040 Niacin Deficiency 262 Poliomyelitis Acute 041 Riboflavin Deficiency 263 Asptic Meningitis 045 Ascorbic Acid Deficiency 264

152 Chicken Pox 052 Vitamin D Deficiency 265 Rubeola 055 Protein Malnutrition 267 Rubella 056 Obesity 277 Encephalitis 062-066 Anemia 280-285 Hepatitis 070 Senile Dementia 2~') Mumps 072 Alcoholic Psychosis 29: Trachoma 076 Schizophrenia 295 Typhus 080-081 Mannie-Depressive Pshychosis 296 Rocky MT. Spotted Fever 082 Involutional Psychosis 296.0 Malaria 084 Depressive Psychosis 296.1 Syphilis 090-093 Mania 296.2 T abes Dorsalis 094 Psychotic Depression 298 Gonorrhea 098 Meningitis 320 Lymphogranuloma Venereum 099 Hereditary Cerebellar Ataxia 332 Leptospirosis 100 Epilepsy (Grand Mal) 345 Vincents Angina 101 Migraine 346 Dermatophytosis 110 Conjuncitivitis 360

Appendix TABLE 1. (Continued). Disease categories considered m developement of expanded descriptor array.

Name ICDA code Name ICDA code Blepharitis 361 Duodenal Ulcer 532 Corneal Opacity 371 Jejuna! Ulcer 534 Strabismus 373 Appendicitis 540 Cataract 374 Inguinal Hernia 550 Glaucoma 375 Gastroenteritis 561 Otitis Externa 380 Chronic Enterocolitis 563 Otitis Media 381-382 Cirrhosis of Liver 571 Mastoiditis 383 Hepatitis 572 Rheumatic Fever 390-391 Cho!elithiasis 574 Ischemic Heart Disease 413 Pancreatitis 577 Endocarditis 421 Nephritis 580 Varicose Veins 454 Nephrotic Syndrome 581 Hemorrhoids 455 Prostatic Hypertrophy 600 Nasopharyngitis 460 Prostatitis 601 Pharynitis 462 Orchitis 604 Tonsillitis 463 Chronic Cystic Breast Disease 610 Laryngitis 464 Salpingitis 614 Acute Bronchitis 466 Complications of Pregnancy 630-678 Influenza 470 Boil 680 Influenza- (Gastroenteric) 473 Cellulitis 681 Pneumonia 480-486 Lymphadenitis 68J Emphysema 492 Impetigo 6ll4 Asthma 493 Seborrhea 690 Hay Fever 507 Eczema 692 Pleurisy 511 Herpetiform Dermatitis 693 Bronchiectasis 518 Pemphigus 694 Toothache 521-522 Erythema, General 695 Gastric Ulcer 531 Psoriasis 696

153 APPENDIX TABLE 1 (Continued). Disease categories considered m development of expanded descriptor array.

Name ICDA code Name ICDA cod" Lichen Planus 697 Acne Vulgaris 706 Urticaria 708 Arthritis, Rheumatoid 712 Osteoarthritis 713 Rheumatism; Myositis 716 Osteomyelitis 720 Ruptured Intcrvertebral Disc 725 Sacroiliac Disease 726 Bunion 730 Bursitis 731 Congenital Defects 740-759 Toxemia of Pregnancy 762 Difficult Labor 764-768 Birth Injury 772 Sprain 840-848 Concussion 850 ICDA = International Classification of Diseases, Adapted for use in the U.S.A. 8th Revision.

APPENDIX TABLE 2. Symptomatologic descriptor headings - general medical - (group code 1).

Ache (See Pain, Neurologic) 20 Discomfort* o: Abortion 21 Drowsiness 02 Appetite* 22 Edema 03 Ascites 23 Exophthalmos 04 Bowed leg 24 Faintness* 05 Breathing* 25 Fatigue 06 Childbirth 26 Feces 07 Chills 27 Fever* 08 Clubbing of digits 28 Flatulence* 09 Congestion 29 Heartburn (indigestion) 10 Constipation• 30 "Heart symptoms" (include palitation)* 11 Costochondral beading 31 Height 12 Coughing* 32 Hemoptysis* 13 Coryza* 33 Hemorrhage, external* 14 Cramps 34 Hemorrhage, internal* 15 Cyanosis 35 Hemorrhage, petechial 16 Defecation 36 Hemorrhage, suggillation (ecchymosis) 17 Dehydration signs 37 Hoarseness 18 Diarrhea• 38 Infestation, lice, body 19 Discharge (exudate)* 39 Infestation, lice head

154 APPENDIX TABLE 2 (Continued). Symptomatologic descriptor headings - general medical - (croups code 1)

40 Infestation, ticks 55 Pallor - Paleness 41 Infestation, mites 56 Pregnant 42 Inflammation• 57 Pulse 43 Injection (vascular) 58 Sneezing 44 Itching• 60 Stiffness (Joint}* 45 Jaundice 61 Sweating 46 Lacrimation 62 Swelling• 47 Lymphadenophathy• 63 Tenderness (to touch) (swelling, glandular) 48 Malaise* 64 Thirst 49 Menstraution* 65 Urination* 50 Miscarriage 66 \'omiting* 51 Mobility (appendage) 67 Weakness, general* 52 Nausea 68 Weakness, local* 53 Obesity 69 Weight (change)* 5~ Onset of disease 70 Weight (amount) Pain (see neurology code)

APPENDIX TABLE 2. Symptomatologic Descriptor Headings - Neurologic and Sensory - (Group Code 2)

01 Consciousness 31 Reflex, Radi1! 01 Convulsion, Unspecified* 32 Reflex, Triceps 02 Convulsion, Clonic 33 Sign, Brudzinski, Neck 03 Convulsion, Tonic 34 Sign, Brudzinski, Leg 04 Gait, Ataxic 35 Sign, Brudzinski, Cheek 05 Gait, Shuffling 36 Sign, Brudzinski, Symphysis 06 Gait, Staggering 37 Sign, Kernigs 07 Hearing Acuity -- Tremor, Muscular (See Muscle Tremors) 08 Hearing Loss 38 Vertigo<· 09 Hearing, Tinnitus 39 Vision, Blind 10 Incontinence, Bowel 40 Vision, Blurred 11 Incontinence, Bladder 41 Vision, Dim 12 Motor Activity 42 Vis!on, Distorted 13 Muscular Spasms 43 Vision, Far Sighted 14 Muscle Tone 44 Vision, Near Sighted 15 Muscle Tremors 45 Vision, Night Blindness 16 Muscle Weakness"· 46 Vision, Nystagmus 17 Numbness 47 Vision. Photophobia 18 Pain, In Site* 48 Vision, Ptosis 19 Pain, Referred 49 Vision, Pupil Constricted 20 Paralysis 50 Vision, Pupil Dilated 21 Reflex, Abdominal 51 Vision, Scotoma 22 Reflex, Accomodation 52 Vision, Strabismus 23 Reflex, Achilles Tendon 53 Vision, Impaired, Unspecified 24 Reflex, Adductor 54 Paraesthesia 25 Reflex, Ankle, Clonus 55 Sensation, Cold'· 26 Reflex, Anticus 56 Sensation, Heat 27 Reflex, Conjunctiva! 57 Sensation, Pressure 28 Reflex, Patellar 58 Sensation, T ~ctile 29 Reflex, Plantar 59 Sensation, Taste 30 Reflex, Pupillary 60 Sensation, Olfactory

155 APPENDIX TALBE 2. Symptomatologic Descriptor Headings - Mental, Social, Behavioral Symptom Array - (Group Code 3). Mental, behavioral

01 Activity, General 24 Libido 02 Affect, Inappropriate 25 Memory 03 Anorexia 26 Mood Swings, Abnormal 04 Anxiety 27 Psychomotor, Asynergia 05 Aphasia 28 Psychomotor Ataxia 06 Apprehension 29 Psychomotor Dystasia 07 Bed Wetting 30 Psychomotor Retardation 08 Behavior, Bizarre 31 Responsiveness 09 Brooding 32 Sleep 10 Delirium 33 Speech, Explosive 11 Delusions 34 Speech, Incoherent 12 Depression 35 Speech, Slurred 13 Dysphagia 36 Speech, Unintelligible 14 Dysphasia 37 Suicide Attempt 15 Dysphonia 38 Suicide Ideas 16 Dysphrasia 39 Suspiciousness 17 Elation, Abnormal 40 Stupor 18 Hallucinations 41 Thought Content 19 Fearfulness 42 Thought Process 20 Hysteria 43 Thought Activity 21 Impotence 44 Awakening-Early 22 Insomnia 45 Withdrawal 23 Irritability

APPENDIX TABLE 2. Symptomatologic Descriptor Headings - Mental, Social, Behavioral Symptom Array - (Group Code 3) (Continued) Social, Behavioral Indicators

46 Absenteeism, Excessive, Home 61 Family Disruption Inadequate Care m 47 Absenteeism, Excessive, School Childhood 48 Absenteeism, Excessive, Work 62 Family Disruption, Inadequate Care of 49 Belligerence Children 50 Drinking, Excessive 63 Family Disruption, Mental Illness in 51 Drung Use Family History 52 Family Disruption, Abandonment by 64 Family Disruption, Parent Absent Parent 65 Family Disruption, Orphanism 53 Family Disruption, Abandonment of 66 Family Disruption, Quarreling Children 67 Family Disruption, Suicide of Parent 54 Family Disruption, Alcoholism in Fa­ 68 Family Disruption, Suicide of Child mily 69 Family Disruption, Suicide of Sibling 55 Family Disruption, Death m Family or Other Relative of Adult 70 Law and Order Problems, Misdemea- 56 Family Disruption, Death m Family nors of Child 71 Law and Order Problems, Felonies 57 Family Disruption, Death m Family, 72 Leaming Difficulties Sibling on Other Relative 73 Pregnancy Unwanted 58 Family Disruption, Drug Use in Family 74 School Drop-Out 59 Family Disruption, Homicide 75 Sexual Deviation 60 Family Disruption, Illegitimacy

156 APPENDIX TABLE 2. Symptomatologic Descriptor Headings - Lesions, Non-Traumatic - (Group Code 4) 01 Abscess (Other Than Boil) 18 Hvperkeratosis 02 Acne Inflammation (See Code 1 # 42 03 Ankylosi> 20 Macule' 04 Areloa 21 Nodule 05 Atresia 22 Opacity• 06 Atrophy 23 P1pule' 07 Boil (Deeper Than Pustule) 30 Pustule 08 Bulla (Blister Vesicle) Swelling (Loc:il) (See Lesions, Trau­ 09 Burrow• matic) 10 Caries, Dental 24 Vascularization (Abnormal) 11 Chancre, Chancroid 25 Varicosities, Venous 12 Discharge (Exudate) 26 Wart 13 Eczema 27 Wheal' 14 Erosion 28 White Patches 15 Eschar 29 Unspecified' 16 Follicle 31 Hair Broken Gangrene (See Lesions, Traumatic) 32 Hair Shed - Hemorrhage (See General Medical) 33 Caries-Tooth 17 Hernia ArPENDIX TABLE 2. Symptomatologic Descriptor Headings - Lesions, Tr:iumatic - (Group Code 5) 01 Abrasion• 18 Chapping 02 Amputation 19 Crush 03 Avulsion 20 Dislocation, Simple 04 Birth Injury 21 Dislocation, Compound 05 Bite, Animal 22 Fracture, Bone, Simple• 06 Bite, Human 23 Fracture, Bone Compound 07 Bite, Insect Frostbite (See Burn, Frost) 08 Bite, Reptile 24 Gangrene 09 Blister (Except Degree II Burn) 25 Hematoma 10 Blood Loss 26 Laceration• 11 Burn, Chemical 27 Puncture• 12 Burn, Electrical 28 Sprain' 13 B~1rn, Frost 29 Swelling (Local)' 14 Burn, Radiation (Sun) 30 Tooth, Broken 15 Burn, Radiation (Artificial) 31 Tooth, Lossened 16 Burn, Thermal• 32 Unspecified 17 Bruise APPENDIX TABLE 2. Anatomic Locator Descriptors Region or Organ 001 Skin, General or Unspecified 020 Septum 002 Cutaneuos 021 Side 003 Subcutaneous 022 Hc1d, Facial, Postnasal 004 Hair 023 Maxillary 005 Head 024 Mandibular• 006 Body 025 Submandibular• 007 Head, General or Unspecified' 026 Cheeks (Exterior)* 008 Head, (Cranial), Frontal 027 Lip 009 Parietal• 028 Lip, Angle• 010 Temporal,* Templar 029 Head, Oral, Tooth, General or 011 Orie* Unspecified'" 012 Parotic• 030 Cuspid & Incisor (Front) 013 Mastoid• 031 Molar & Premohr (Side) 014 Occipital<· 032 Teeth, General or Unspecified'" 015 Head, Facial, General or Unspecified"<­ 033 Gums* 016 Orbit 834 Tongue, Unspecified"" 017 Zygoma (Cheekbone) 035 Base 018 Nose, Unspecified• 036 Free 019 Nose, Bridge•

157 APPENDIX TABLE 2. Anatomic Locator Descriptors (Continued). Region or Organ 037 (Tooth) 056 Clavicular (Span)* Pharynx* 057 Lateral (Point) 038 Tonsils* (Thoracic and Neck Organs) 039 Cheeks (Interior)* 058 Trachea* 040 Eye, General or Unspecified''" 059 Bronchi* 041 Eyelid 060 Lungs 042 Conjunctiva-Eyelid 061 Heart 043 Conjunctiva-Ocular 062 Breast* 044 Cornea 063 Larynx 045 lris-Uveal 064 Esophagus 046 Lens 065 Glottis 047 Sciera 066 Epiglottis 048 Ear, General or Unspecified* 067 Unknown or Unspecified 049 Pinna 068 Chest, General or Unspecified•· 050 Lobe 069 Infraclavicular* 051 Canal 070 Sternal* 052 Eardrum 071 Pectoral-mammary''· 053 Neck, General or Unspecified* 072 Nipple 054 Shoulder, General or Unspecified* 073 Inframmary* 055 Medial (Base of Neck) APPENDIX TABLE 2. Anatomic Locator Descriptors (Continued) Region or Organ 074 Back, General or Unspecified<· 091 Pelvic Organs, Penis<· 075 Scapular* 092 Testicles 076 Infrascpular* 093 Scrotum 077 Lumbar 094 Vulva 078 Sacro-Coccygeal* 095 Vagina 079 Gluteal* 096 Urinary Bladder 080 Stomach, General or Unspecified* 097 Urethra 081 Hypochondriac* 098 Rectum 082 Epigastric 099 Urethral Orifice 083 Abdomen, General or Unspecified<· 100 Anus 084 Lumbar* 101 Perinea! Surface* 085 Umbilical 102 Limbs (Pectoral) 086 Umbilicus (Navel) 103 Shoulder Joint* 087 Inguinal* 104 Axilla* 088 Bowels, General or Unspecified 105 Arm* 089 Hip Bone (Ilia! Crest) 106 Arm and Hand'· 090 Pubis 107 Elbow Joint* APPENDIX TABLE 2. Anatomic Locator Descriptors (Continued) Region or Organ 108 Elbow Joint* 125 Leg'' 109 Forearm* 126 Leg & Foot 110 Wrist 127 Ankle* 111 Hand, General or Unspecified<· 128 Heel 112 (Metacarpus) 129 Foot, General or Unspecified* 113 Hand & Fingers 130 Foot, (Metatarsal) Arch) 114 Fingers* 131 Limbs, Toes, General or Unspecified 115 Finger, Index 132 1 (Great) 116 Middle 133 2 117 Ring* 134 3 118 Small<- 135 4 119 Thumb* 136 5 (Small) 120 Hip* 137 Bone, General or Umpecified* 121 Hip Joint* 138 Vien, General or Unspecified* 122 Femur (Thigh)* 139 General or Unspecified (Including 123 Knee Joint* Trunk) 124 Knee Cap*

158 APPENDIX TABLE 2. Common Modifiers

Group 1 Group 2 Group 3 Group 3 Amount or Appearance­ Character Character Degree (Com.) Color-Consistencc (Cont.) 01 Acute 01 Black Cl Abnormal* 26 Non-Pitting 02 Chronic 02 Blanched 02 Audible 27 Normal 03 Complete 03 Bloody''· 03 Burning 28 Organized 04 Decreased Rate 04 Cru;ty 04 Confused 29 Painful* 05 Decreased Volume* 05 Formed 05 Deep 30 Paroxysmal 06 Degree I 06 Frothy 06 Dependent 31 Perverted (Distorted) 07 Degree II 07 Gray 07 Depressed 32 Pitting 08 Degree III 08 Hard* 08 Difficult* 33 Premature 09 Extensive 09 Liquid 09 Diffuse 34 Proiecti!e 10 Full 10 Membranous 10 Disorganized 35 Radiating 11 High 11 Mucoid 11 Disturbed 36 Restless 12 Incomplete 12 Purulent* 12 Dry 37 Regular 13 Increased Rate 13 Red* 13 Dull 38 Shallow* 14 Increased Volume 14 Scabbing 14 Exa~gerated 39 Sharp'· 15 Low 15 Scaling 15 Fetid 40 Spontaneous 16 Moderate'' 16 Serous-\Vatery''· 16 Focal 41 Sudden 17 Normal Rate 17 Tar-Like 17 Free 42 Superficial 18 Normal Volume'-· 18 Unformed 18 Gradual 43 Tenesmus 19 Partial 19 White 19 Hacking 44 Weak 20 Profuse 20 Yellow-Brown 20 Inaudible 45 Wheezing 21 Rapid 21 Yellow-Green 21 Induced 22 Scant 22 Yellow-White 22 Irregular 23 Severe<· 23 Labored* 24 Slight* 24 Loc:d 25 Slow 25 Moist

APPENDIX TABLE 2. Common Modifiers (Cont.)

Group 4 Group 5 Group 6 Group 6 (Cont.) Linkage Location Occurrence Occurrence 01 After Convulsion 01 All* 01 Afternoon 1 7 Trimester I 02 After Eating, Delayed 02 Anterior 02 Continuous''. 18 T rirnester II 03 After Eating, Irr.mediate''· 03 Both-Bilatrral''· 03 Evening 19 T rirnester III 04 Frequent''· 04 After Exercise 04 Central Group 7 05 After Fever 05 Extensor'-· 05 General O:hcr 06 After Injury 06 External 06 Intermittent 07 After Medication 07 Flexor 07 Morning 01 Other 08 After Unconsciousness 08 Internal<· 08 Multiple (Episode) 02 No Pattern 09 Alcohol-Linked 09 Lateral 09 Negative (Absent]<· 03 Unknown 10 Drug-Linked 10 Left•· 10 Nighttime* 04 Unspecified<· 11 During Fever 11 Lower'· 11 Occasional"- 05 Variable Not Current 12 Medial'· 12 Positive 12 Not Relieved by Eating 13 Posterior 13 Primary 13 Not Relieved by Rest 14 Right'" 14 Recurrent'-· 14 Relieved by Eating 15 Tip-terminal 15 Secondary 15 Relieved by Rest 16 Upper'-· 16 Single (Episode) 16 Without Fever

159 APPENDIX TABLE 2. Miscellaneous Information

Identification Teacher System Id Number for Individual Mission Worker Household Number Physician Village Number Dentist Sex of Individual Nurse Age or Doh of Individual (?) Other Days of Restricted Activity Source or Place of Treament Numbcr-(1-7) (If Report is Weekly) Indian Health Facility Proportuion-Full, 1/2 State or County Facility Outcome Status Charitable Organization Recovered - Contract Clinic or Hospital Continuing - Improved Private Clinic or Hospital Unimproved Other Deteriorating Source of Advice Died Work-Flow Program Referred to Hospital Standing Orders Unknown Physician Other Nurse Treatment Other Was Individual Treated - Yes, No. None Person Providing Treatment Special Events Self Special event forms will be developed to Family Member report entry or departure from system, Neighbor such as births, deaths, relocation, refusal Community Aide (Ihs) of interview or elimination of groub Medic. (Physician Asst.) from sample.

APPENDIX TABLE 2 Pre-existing Conditions History of: 01 Abortion 22 Drug Addiction 02 Alcoholism 23 Ear Disease 03 Allergy or Drug Reaction 24 Emotional Disorder 04 Arthritis or Rheumatism 25 Eye Disease 05 Asthma 26 Hemophilia 06 Birth Injury 27 High Blood Pressure 07 Cardiovascular Disease Cardiac 28 Kidney Disorders Disease 29 Miscarriage 08 Cardiovascular Disease Vascuhr 30 Neurological Disorder Disease 31 Rheumatic Disease 09 Childhood Infection, Severe 32 Tuberculosis 10 Cranial Injury 33 Venereal Disease, Gonorrhea 11 Congenital Defect, Anatomic 34 Venereal Disease, Syphilis 12 Congenital Defect, Metabolic 35 Hearing Loss, Partial - Single Ear 13 Congenital Defect, Psychoneural 36 Hearing Loss, Parital - Bilateral 14 Deprivation, Educational 37 Hearing Loss, Complete - Single Ear 15 Deprivation, Nurtritional 38 Hearing Loss, Complete - Bilateral 16 Deprivation, Psycho Social 39 Vision, Blind, or Dim Partial - Single 17 Dental Disease Eye (Incl. Refractive Severe) 18 Diabetes 40 Vision, Blind, or Dim Partial - 19 Difficult Labor (Dystocia) Bilateral (Incl. Refractive Severe) 20 Difficult Pregnancy (Inc. Eclampsia) 41 Vision, Blind, Complete - Single Eye 21 Disabling Injury 42 Vision, Blind, Complete - Bilateral

160 APPEDNIX TABLE 2 Injuries-Cause 01 Motor Vehicle Traffic Accident 10 Injuries by Animals, Except Bires 02 Motor Vehicle - non Traffic and 11 Accidental Browning and Submersion Other 12 Accidents Caused by Cutting or 03 Water Transport Piercing 04 Air and Space Transport 13 Accidents Caused by Firearms, Missiles 05 Accidental Poisonings 14 Accidents Caused by Machinery 06 Accidental Falls 15 Suicide, Self - Inflicted Injury 07 Fire and Flames 16 Homicide and Assault 08 Natural and Environmental Factors 17 Legal Intervention 09 Bites and Stings 18 Undetermined Whether Accident or Delib.

APPEDNIX TABLE 3 - Examples of fixed formats General Medical Symptom Array Ache (See PAIN, Neurological Symptoms) Abortion Spontaneous Trimester 1 Single Episode Induced Trimester 2 Multiple Episodes (history of) Unspecified Trimester 3 Appetite Increased Regular Perverted Normal Irregular Decreased Ascitcs Slight Acute (recent) Moderate Chronic (long-term or recurrent} Severe Unspecified Bowed leg Slight Right Moderate Left Severe Single Unspecified Bilateral Breathing Normal Regular Labored Shallow Audible Painful Rapid Irregular (obstructed) Deep Inaudible Slow Free Wheezing Childbirth Normal Full Term Single First Unspecified Difficult Premature Multiple Not First Chills Slight Continuous During Fever Moderate Intermittent Without Fever Severe Occasioal Unspecified After Fever Clubbing of Digits Anatomic Locator Code Congestion (Stoppage) Anatomic Locator Code Constrpation Slight.. Tenesmus A~ure Moderate Recurrent Severe

161