Day-to day experience
Tuberculosis surveillance
and evaluation system in Portugal
T. Serra”. A. Salema”, H. Lopes+, M. L. Antunes* *Tuberculosis and L~tng Diseases Department, Gene& Directorate for Primary Health Cure
General Directorate for Primary Health Care, ‘Computer
Division,
S U MM A R Y. Tuberculosis is an important public health problem in Portugal, so a new and improved computerized programme for the surveillance and evaluation of tuberculosis data was set up to obtain more precise information of relevant epidemiological indices, besides helping clinicians and regional coordinators to evaluate the local situation, such as clinical features, results of treatment and surveillance of failures and abscondings. Data stored on the computer is described in detail. The evolution of the incidence of tuberculosis is presented, together with more detailed figures for 1990. These figures were obtained with the former, cruder process. The present system is now being deployed and checked, after 1 year’s trial and evaluation by some of its users. Its results will be presented in a future publication. R fj.9 U M t. La tuberculose est un problitme important de Sante publique au Portugal, et de ce fait un programme informatique nouveau et ameliot+. a et6 instaure afin de surveiller et d’evaluer les donnees de la tuberculose, d’une part afin d’obtenir des informations plus precises sur les indices Cpidemiologiques concern&, d’autre part aiin d’aider les cliniciens et les coordinateurs regionaux a Cvaluer la situation locale tels par exemple les aspects cliniques, les resultats des traitements, la surveillance des Cchecs et les abandons du traitement. Les donnees informatiques stockees sont d&rites de facon d&taillCe. L’evolution de l’incidence de la tuberculose est presentee, ainsi que des chiffres plus detailles pour l’annee 1990. Ces chiffres ont CtCobtenus au moyen de I’ancienne procedure, plus sommaire. Le present systeme est en train d’&tre etendu et verifie apres une an&e d’essai et d’haluation par certains des utilisateurs. Ses resultats seront presentes dans une publication ulterieure. R E S UM E N. La tuberculosis es un problema importante de Salud Publica en Portugal, razon por la cual se ha instalado un nuevo sistema computarizado para la vigilancia y para la evaluation de 10s datos de tuberculosis, en vista de poder obtener informaciones mis precisas sobre 10s principales indices epidemiologicos y ayudar a 10s clinicos y a 10s coordinadores regionales a evaluar la situation local, coma por ejemplo, 10s aspectos clinicos, 10s resultados de1 tratamiento y la vigilancia de 10s fracasos y abandonos de1 tratamiento. Se describe en detalle 10s datos computarizados utilizados. Se presenta la evolution de la incidencia de la tuberculosis, junto con las cifras mas detalladas para 1990. Estas cifras fueron obtenidas con el antiguo procedimiento mas simple. El actual sistema se esta extendiendo y probando, despues de un afio de ensayo y de evaluation por algunos utilizadores. Los resultados se& presentados en una publication ulterior.
INTRODUCTION
the very sick, sanatoria for chronic cases and dispensaries for ambulatory patients. In 1984 this vertical structure was dismantled, most sanatoria later being closed, and tuberculosis coverage was absorbed into the primary health care (PHC) system throughout the country’ In large cities dispensaries evolved into chest clinics covering other respiratory diseases besides tuberculosis, providing guidance and epidemiological surveillance of tuberculosis management in smaller health centres. Tuberculosis surveillance started with the registration in books of nationwide cases in 1907.
Tuberculosis (TB) was a public health concern in Portugal as early as the 19th century, when a private institution to take care of the diseased was set up by Queen Dona Amelia in 1899.’ This evolved into a country-wide state institute, comprising hospitals for
Correspondence to: Dr Maria L. Antunes, Director of Services for Tuberculosis and Lung Disease, Ministerio da Salide, Al. D. Afonso Henriques 45, 1056 Lisboa, Portugal. 345
These registers were continued until 1950, when a manual card filing system was created, later to be replaced by a punch-card method. In 1983 a computerized system was first developed, managed by the central health mainframe. The need to modernize equipment and software led us to undertake an analysis of the basis for a new system of and a software was surveillance’~4 tuberculosis developed by the Computer Sciences Department of the Universidade Nova de Lisboa, under the supervision of A. Amaud, the Planning Advisor. This software was created on MS-DOS, supported by the ‘CLIPPER programme’ (Clipper Nantucket Corporation), with possibilities of connection to networks or inclusion in higher capacity hardware.
SYSTEM OPERATION The country is divided into 20 regions, including the islands of AFores and Madeira. Doctors fill in patients’ files on completion of diagnosis and send them on a monthly basis to a regional coordinator of tuberculosis and lung diseases at the Regional Health Authority, where data are keyed into a personal computer. A floppy disk with the region’s monthly entries is sent by post to our central registry which assembles data from all the regions, proceeding to analysis, evaluation and statistical work. The system allows for study of the tuberculosis cases’ main clinical features and treatment results, with special emphasis on failures and abscondings. Besides the usual epidemiological indices5 it also allows for the evaluation of contacts’ disease.
DATA STORED IN COMPUTER The items stored are: 1. Identification. Health Unit Code (HC). *National health number (being developed). Registration number. *Name. Sex. Date of birth. *Address. Race. Occupation. Place of work. Retired. *Items for clinical use and not sent to the central department. 2. Registration/general information. Date of registration. Mode of presentation: symptoms;
screening; abnormal X-rays; contact of patient; transferred from hospital; transferred from another HC. Smoking history. Ethanol consumption, Present or past disease (particularly 3. Vaccination history. BCG at birth. scar. Age at first vaccination Age at revaccination. Mantoux test. units. diameter in mm.
HIV if known).
if other.
4. Present disease. Date of diagnosis. Patient’s delay. Doctor’s delay. Form of disease: primary; pulmonary; pleural; CNS; tuberculosis of bones and joints; urogenital; miliary; peripheral lymphadenopathy; other. X-ray classification. 5. Pathology results. Bacteriology: type of product (list); result of smear examination; result of culture; date of examination; atypical mycobacteria, if any. 6. Treatment. Present treatment. Proposed regimen (list). Past treatment. Regimen used (list). number of courses of treatment. Result of treatment date of negativation of smear examination. Unable to characterize negativation due to lack of product. 7. Cancellation Reason for cancellation. cure. absconding. transfer. death. Date of cancellation.
Tuberculosis
DATA ANALYSIS The data are analyzed The main tuberculosis layouts are:
at the regional and central levels. and other mycobacterial disease
No. of new cases and relapses by sex and ethnic group. No. of new cases by clinical disease and bacteriological status. Prevalence by sex. No. of confirmed cases by clinical disease. Methods of case-finding. Results of tuberculin tests in new cases. Previous BCG vaccination in new cases. Mean no. of contacts per case. Contact’s disease. List of cures. List of failures (culture-positive beyond the 4th month). List of chronic cases (treatment maintained beyond the 12th month). No. of absconded patients by month of occurrence and bacteriological status. HIV infection among new cases. AIDS incidence among new cases. Patient mortality by age and sex. Other analysis, such as of the treatment regimens and of patient’s and doctor’s delay, is possible. HIV infection and AIDS occurrence in tuberculosis cases, although still in small numbers in Portugal, are analysed and trends carefully assessed.h incidence
80
60
1
rate/100
surveillance
and evaluation
RESULTS The former methods of data collection allowed for a surveillance system whose results, expressed in incidence rate figures, are summarized in the Figure. They constituted part of a poster presentation at the Boston conference in 1990.’ The figures for 1990 do not differ substantially from these and they are outlined in more detail in the Table showing a very slight reduction in the incidence rate.x
DISCUSSION Tuberculosis has been important public health problem in Portugal and efforts to reduce its burden have been slow in producing significant results. Up to 1975 there was a substantial and steady decrease of new cases.
,
/
/
/
Figure -
Tuberculosis
1984 incidence
1983-1989.
1985
347
Regional evaluation of the tuberculosis programme is fed back to doctors in health facilities for self-appraisal. Comparative analysis per region and trends in the various epidemiological items is performed at the central level. The analysis output is fed back to the regional coordinators. Nationwide statistics, with analysis and evaluation, are published annually and the necessary measures are subsequently taken, hopefully to correct any alterations detected in tuberculosis control in the regions involved in this system.
000 inhabitants
1983
svstem in Portueal
1986
1987
1988
Table.
Year 1990 Item
Total TB cases Pulmonary Bact. confirmed Smear-positive Extrapulmonary HistJbact. confiied TB under 15 years TB meningitis Deaths, all ages Deaths under 15 years % BCG coverage of newborns
Number 5894 3852 2350 1993 2042 347 480 35 274 1
(%)
(100%) (61%) (52%) (100%) (17%)
Rate/100 000 57.0 37.1 22.7 19.3 19.8 3.3 22.0 0.34 2.65 0.16
(89%)
With the social disturbances of 1974 and 1975, a massive invasion of several hundred thousand citizens of the African ex-colonies, most of them in precarious economic and health situations, took place. These facts explain, probably for the most part, why the decrease in disease incidence stopped and some occasional small increases were observed. The hasty integration of a vertical tuberculosis institute into an incipient PHC system in 1984 was certainly an aggravating factor, despite the existence of a national tuberculosis programme with recommendation of short-course drug regimens, central registering of cases and nationwide procurement of free antituberculosis drugs. The World Health Organization draws attention to the present situation of the tuberculosis problem in the world and its different regions,’ and emphasizes the need to standardize definitions so as to avoid bias in estimating case reporting and coverage’0 and to create uniformity in concepts and language. Its still being an important health problem in this country allows for the development of a new computerized system in order to analyse the possible causes of the tuberculosis situation and to implement all the necessary corrective measures, either in regional policies or in doctors’ patient management, trying to improve case-finding and treatment success, particularly directed at the smear-positive cases in order to achieve a 70% case-finding and 85% cure rate, in accordance with the WHO directives.’ In a middle-income country with reasonable health services and full provision of free drugs for adequate shortcourse regimens, it appears contradictory to maintain such levels of tuberculosis incidence, since HIV is not as yet a major problem. The figures presented were obtained with the former,
cruder system. The new one is now being deployed and subjected to testing and evaluation after 1 year’s trial by some of the regional coordinators and after adjustments derived from their findings and suggestions. A review of its performance and results will be the subject of a second publication.
CONCLUSIONS Analysis of the data obtained so far allows for some speculation about the reasons that may justify the numbers in Figure 2. They may be due to: 1. Inadequate regimens in the past with the emergence of resistant strains. 2. Overestimation of cases because of the inclusion of retreatments and/or because of low bacteriological confirmation. 3. Slow improvement over the years of BCG coverage of newborns. 4. Deficient socioeconomic conditions in groups such as African immigrants, job-seekers from the country and youths who are jobless or in gangs, living on the fringes of the main cities. As far as tuberculosis is concerned there is hope that Portugal will become less of an epidemiological riddle.
References 1. Rosa, A B: ANT, LANT, SLAT - Historia Sumaria da Instituicao. Lisboa, 1979. 2. World Health Organization: Primary Health Care, Alma-Ata. ‘Health for All’ Series, No 1. Geneva, 1978. 3. Tmka L, Dankova D, Erban J. Surveillance systems and public health priority actions. Bull Int Union Tuberc Lung Dis 1990; 65: 37-38. 4. Aoki M. Tuberculosis surveillance system in Japan. Bull Int Union Tuberc Lung Dis 1990; 65: 4447. 5. Styblo K. Sate of the Art. I - epidemiology of tuberculosis. Bull Int Union Tuberc 1978; 53: 145-153. 6. Murray J F. The white plague: down and out, or up and coming? Am Rev Respir Dis 1989; 140: 1788-1795. 7. Antunes M L, Salem A. Tuberculosis situation in Portugal: the end of the eighties. Am Rev Respir Dis 1990, 141-A445. 8. Dirreqb Geral dos Cuidados de Satlde Primaries. Tuberculose em Portugal, 1990. Lisboa, 1991. 9. World Health Organization. Tuberculosis control and research strategy for the 1990’s. WHOITBI91.157, Rev, 1: l-l 1, Geneva, 1991. 10. Sudre P, ten Dam Cl, Chan C, Kochi A. Tuberculosis in the present time: a global overview of the tuberculosis situation. WHORB/91. 158: l-47. Geneva, 1991.
Tuberculosis surveillance
and evaluation system in Portugal
T. Serra”. A. Salema”, H. Lopes+, M. L. Antunes* *Tuberculosis and L~tng Diseases Department, Gene& Directorate for Primary Health Cure
General Directorate for Primary Health Care, ‘Computer
Division,
S U MM A R Y. Tuberculosis is an important public health problem in Portugal, so a new and improved computerized programme for the surveillance and evaluation of tuberculosis data was set up to obtain more precise information of relevant epidemiological indices, besides helping clinicians and regional coordinators to evaluate the local situation, such as clinical features, results of treatment and surveillance of failures and abscondings. Data stored on the computer is described in detail. The evolution of the incidence of tuberculosis is presented, together with more detailed figures for 1990. These figures were obtained with the former, cruder process. The present system is now being deployed and checked, after 1 year’s trial and evaluation by some of its users. Its results will be presented in a future publication. R fj.9 U M t. La tuberculose est un problitme important de Sante publique au Portugal, et de ce fait un programme informatique nouveau et ameliot+. a et6 instaure afin de surveiller et d’evaluer les donnees de la tuberculose, d’une part afin d’obtenir des informations plus precises sur les indices Cpidemiologiques concern&, d’autre part aiin d’aider les cliniciens et les coordinateurs regionaux a Cvaluer la situation locale tels par exemple les aspects cliniques, les resultats des traitements, la surveillance des Cchecs et les abandons du traitement. Les donnees informatiques stockees sont d&rites de facon d&taillCe. L’evolution de l’incidence de la tuberculose est presentee, ainsi que des chiffres plus detailles pour l’annee 1990. Ces chiffres ont CtCobtenus au moyen de I’ancienne procedure, plus sommaire. Le present systeme est en train d’&tre etendu et verifie apres une an&e d’essai et d’haluation par certains des utilisateurs. Ses resultats seront presentes dans une publication ulterieure. R E S UM E N. La tuberculosis es un problema importante de Salud Publica en Portugal, razon por la cual se ha instalado un nuevo sistema computarizado para la vigilancia y para la evaluation de 10s datos de tuberculosis, en vista de poder obtener informaciones mis precisas sobre 10s principales indices epidemiologicos y ayudar a 10s clinicos y a 10s coordinadores regionales a evaluar la situation local, coma por ejemplo, 10s aspectos clinicos, 10s resultados de1 tratamiento y la vigilancia de 10s fracasos y abandonos de1 tratamiento. Se describe en detalle 10s datos computarizados utilizados. Se presenta la evolution de la incidencia de la tuberculosis, junto con las cifras mas detalladas para 1990. Estas cifras fueron obtenidas con el antiguo procedimiento mas simple. El actual sistema se esta extendiendo y probando, despues de un afio de ensayo y de evaluation por algunos utilizadores. Los resultados se& presentados en una publication ulterior.
INTRODUCTION
the very sick, sanatoria for chronic cases and dispensaries for ambulatory patients. In 1984 this vertical structure was dismantled, most sanatoria later being closed, and tuberculosis coverage was absorbed into the primary health care (PHC) system throughout the country’ In large cities dispensaries evolved into chest clinics covering other respiratory diseases besides tuberculosis, providing guidance and epidemiological surveillance of tuberculosis management in smaller health centres. Tuberculosis surveillance started with the registration in books of nationwide cases in 1907.
Tuberculosis (TB) was a public health concern in Portugal as early as the 19th century, when a private institution to take care of the diseased was set up by Queen Dona Amelia in 1899.’ This evolved into a country-wide state institute, comprising hospitals for
Correspondence to: Dr Maria L. Antunes, Director of Services for Tuberculosis and Lung Disease, Ministerio da Salide, Al. D. Afonso Henriques 45, 1056 Lisboa, Portugal. 345
These registers were continued until 1950, when a manual card filing system was created, later to be replaced by a punch-card method. In 1983 a computerized system was first developed, managed by the central health mainframe. The need to modernize equipment and software led us to undertake an analysis of the basis for a new system of and a software was surveillance’~4 tuberculosis developed by the Computer Sciences Department of the Universidade Nova de Lisboa, under the supervision of A. Amaud, the Planning Advisor. This software was created on MS-DOS, supported by the ‘CLIPPER programme’ (Clipper Nantucket Corporation), with possibilities of connection to networks or inclusion in higher capacity hardware.
SYSTEM OPERATION The country is divided into 20 regions, including the islands of AFores and Madeira. Doctors fill in patients’ files on completion of diagnosis and send them on a monthly basis to a regional coordinator of tuberculosis and lung diseases at the Regional Health Authority, where data are keyed into a personal computer. A floppy disk with the region’s monthly entries is sent by post to our central registry which assembles data from all the regions, proceeding to analysis, evaluation and statistical work. The system allows for study of the tuberculosis cases’ main clinical features and treatment results, with special emphasis on failures and abscondings. Besides the usual epidemiological indices5 it also allows for the evaluation of contacts’ disease.
DATA STORED IN COMPUTER The items stored are: 1. Identification. Health Unit Code (HC). *National health number (being developed). Registration number. *Name. Sex. Date of birth. *Address. Race. Occupation. Place of work. Retired. *Items for clinical use and not sent to the central department. 2. Registration/general information. Date of registration. Mode of presentation: symptoms;
screening; abnormal X-rays; contact of patient; transferred from hospital; transferred from another HC. Smoking history. Ethanol consumption, Present or past disease (particularly 3. Vaccination history. BCG at birth. scar. Age at first vaccination Age at revaccination. Mantoux test. units. diameter in mm.
HIV if known).
if other.
4. Present disease. Date of diagnosis. Patient’s delay. Doctor’s delay. Form of disease: primary; pulmonary; pleural; CNS; tuberculosis of bones and joints; urogenital; miliary; peripheral lymphadenopathy; other. X-ray classification. 5. Pathology results. Bacteriology: type of product (list); result of smear examination; result of culture; date of examination; atypical mycobacteria, if any. 6. Treatment. Present treatment. Proposed regimen (list). Past treatment. Regimen used (list). number of courses of treatment. Result of treatment date of negativation of smear examination. Unable to characterize negativation due to lack of product. 7. Cancellation Reason for cancellation. cure. absconding. transfer. death. Date of cancellation.
Tuberculosis
DATA ANALYSIS The data are analyzed The main tuberculosis layouts are:
at the regional and central levels. and other mycobacterial disease
No. of new cases and relapses by sex and ethnic group. No. of new cases by clinical disease and bacteriological status. Prevalence by sex. No. of confirmed cases by clinical disease. Methods of case-finding. Results of tuberculin tests in new cases. Previous BCG vaccination in new cases. Mean no. of contacts per case. Contact’s disease. List of cures. List of failures (culture-positive beyond the 4th month). List of chronic cases (treatment maintained beyond the 12th month). No. of absconded patients by month of occurrence and bacteriological status. HIV infection among new cases. AIDS incidence among new cases. Patient mortality by age and sex. Other analysis, such as of the treatment regimens and of patient’s and doctor’s delay, is possible. HIV infection and AIDS occurrence in tuberculosis cases, although still in small numbers in Portugal, are analysed and trends carefully assessed.h incidence
80
60
1
rate/100
surveillance
and evaluation
RESULTS The former methods of data collection allowed for a surveillance system whose results, expressed in incidence rate figures, are summarized in the Figure. They constituted part of a poster presentation at the Boston conference in 1990.’ The figures for 1990 do not differ substantially from these and they are outlined in more detail in the Table showing a very slight reduction in the incidence rate.x
DISCUSSION Tuberculosis has been important public health problem in Portugal and efforts to reduce its burden have been slow in producing significant results. Up to 1975 there was a substantial and steady decrease of new cases.
,
/
/
/
Figure -
Tuberculosis
1984 incidence
1983-1989.
1985
347
Regional evaluation of the tuberculosis programme is fed back to doctors in health facilities for self-appraisal. Comparative analysis per region and trends in the various epidemiological items is performed at the central level. The analysis output is fed back to the regional coordinators. Nationwide statistics, with analysis and evaluation, are published annually and the necessary measures are subsequently taken, hopefully to correct any alterations detected in tuberculosis control in the regions involved in this system.
000 inhabitants
1983
svstem in Portueal
1986
1987
1988
Table.
Year 1990 Item
Total TB cases Pulmonary Bact. confirmed Smear-positive Extrapulmonary HistJbact. confiied TB under 15 years TB meningitis Deaths, all ages Deaths under 15 years % BCG coverage of newborns
Number 5894 3852 2350 1993 2042 347 480 35 274 1
(%)
(100%) (61%) (52%) (100%) (17%)
Rate/100 000 57.0 37.1 22.7 19.3 19.8 3.3 22.0 0.34 2.65 0.16
(89%)
With the social disturbances of 1974 and 1975, a massive invasion of several hundred thousand citizens of the African ex-colonies, most of them in precarious economic and health situations, took place. These facts explain, probably for the most part, why the decrease in disease incidence stopped and some occasional small increases were observed. The hasty integration of a vertical tuberculosis institute into an incipient PHC system in 1984 was certainly an aggravating factor, despite the existence of a national tuberculosis programme with recommendation of short-course drug regimens, central registering of cases and nationwide procurement of free antituberculosis drugs. The World Health Organization draws attention to the present situation of the tuberculosis problem in the world and its different regions,’ and emphasizes the need to standardize definitions so as to avoid bias in estimating case reporting and coverage’0 and to create uniformity in concepts and language. Its still being an important health problem in this country allows for the development of a new computerized system in order to analyse the possible causes of the tuberculosis situation and to implement all the necessary corrective measures, either in regional policies or in doctors’ patient management, trying to improve case-finding and treatment success, particularly directed at the smear-positive cases in order to achieve a 70% case-finding and 85% cure rate, in accordance with the WHO directives.’ In a middle-income country with reasonable health services and full provision of free drugs for adequate shortcourse regimens, it appears contradictory to maintain such levels of tuberculosis incidence, since HIV is not as yet a major problem. The figures presented were obtained with the former,
cruder system. The new one is now being deployed and subjected to testing and evaluation after 1 year’s trial by some of the regional coordinators and after adjustments derived from their findings and suggestions. A review of its performance and results will be the subject of a second publication.
CONCLUSIONS Analysis of the data obtained so far allows for some speculation about the reasons that may justify the numbers in Figure 2. They may be due to: 1. Inadequate regimens in the past with the emergence of resistant strains. 2. Overestimation of cases because of the inclusion of retreatments and/or because of low bacteriological confirmation. 3. Slow improvement over the years of BCG coverage of newborns. 4. Deficient socioeconomic conditions in groups such as African immigrants, job-seekers from the country and youths who are jobless or in gangs, living on the fringes of the main cities. As far as tuberculosis is concerned there is hope that Portugal will become less of an epidemiological riddle.
References 1. Rosa, A B: ANT, LANT, SLAT - Historia Sumaria da Instituicao. Lisboa, 1979. 2. World Health Organization: Primary Health Care, Alma-Ata. ‘Health for All’ Series, No 1. Geneva, 1978. 3. Tmka L, Dankova D, Erban J. Surveillance systems and public health priority actions. Bull Int Union Tuberc Lung Dis 1990; 65: 37-38. 4. Aoki M. Tuberculosis surveillance system in Japan. Bull Int Union Tuberc Lung Dis 1990; 65: 4447. 5. Styblo K. Sate of the Art. I - epidemiology of tuberculosis. Bull Int Union Tuberc 1978; 53: 145-153. 6. Murray J F. The white plague: down and out, or up and coming? Am Rev Respir Dis 1989; 140: 1788-1795. 7. Antunes M L, Salem A. Tuberculosis situation in Portugal: the end of the eighties. Am Rev Respir Dis 1990, 141-A445. 8. Dirreqb Geral dos Cuidados de Satlde Primaries. Tuberculose em Portugal, 1990. Lisboa, 1991. 9. World Health Organization. Tuberculosis control and research strategy for the 1990’s. WHOITBI91.157, Rev, 1: l-l 1, Geneva, 1991. 10. Sudre P, ten Dam Cl, Chan C, Kochi A. Tuberculosis in the present time: a global overview of the tuberculosis situation. WHORB/91. 158: l-47. Geneva, 1991.
