Infant death surveillance as an indicator of health care system effectiveness - a study conducted in northeastern Brazil

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1 /02/78-06/509 Jornal de Pediatria Copyright 2002 by Sociedade Brasileira de Pediatria Jornal de Pediatria - Vol. 78, Nº6, ORIGINAL ARTICLE Infant death surveillance as an indicator of health care system effectiveness - a study conducted in northeastern Brazil Paulo G. Frias, 1 Pedro Israel C. de Lira, 2 Suely A. Vidal, 3 Lygia C. Vanderlei 3 Abstract Objective: to evaluate the access to and quality of health care administered to infants based on postmortem data. Methods: a descriptive cross-sectional census-based study was carried out to assess the infant deaths that occurred in the town of Bom Conselho, state of Pernambuco, between January 1st 1999 and December 31st Home interviews and inspection of medical records were used for data collection. Deaths were identified by consulting the Mortality Information System, health centers, public notary services, cemeteries, health workers, and midwives. Results: seventy-one of 72 deaths were investigated, with a loss of 1.4%. The majority (69.4%) of deaths occurred in the postneonatal period and 67.6% of them occurred at home. In 77.5% of the cases medical help was sought at least once, most frequently at emergency units (65.1%). However, 22.5% of the patients were not taken to any kind of health care service. Most health care services (90.9%) were less than one hour away from the patient s home, 78.5% were located in the town of residence and 97% of the consultations were carried out by doctors. Of 88 consultations, 39.8% resulted in hospitalization and 27.3% in discharge without arrangement of a follow-up appointment. In 84% of the cases the medication was provided free of charge. Conclusions: death surveillance revealed restricted access to medical care and poor quality of health care administered to infants living in the referred town. The high rate of home deaths is related to access, whilst the journeys made by some of the mothers to health care units, during the illness that caused the death of their infants, points to the precarious organization of those services. J Pediatr (Rio J) 2002;78(6):509-16: evaluation of health services; evaluation of health care quality; evaluation of processes and results; health care quality indicators; home surveys of infant deaths. Introduction According to Murnaghan, infant mortality is the principal indicator of the state of a population s health and also of the effectiveness of a poor country s health services. 1 Difficulty in accessing health services, the quality of care and precarious 1. Master s Degree in Pediatrics, Universidade Federal de Pernambuco. 2. Ph.D. in Medicine, London University. 3. Master s Degree, Instituto Materno Infantil de Pernambuco. Manuscript received Jun Accepted for publication Aug socioeconomic conditions have been identified as determinant and/or limiting factors to the high levels of infant mortality. 2-4 Since 1976, Rutstein 5 has recommended the selection of certain events (deaths or diseases) which could serve as indicators of the effectiveness of health services and health programs. The selection of infant and maternal death as sentinel, 5 also termed unnecessary 6 or consented, 7 is justified by its strict relationship with the access to and quality of medical care afforded to the mother-infant group. Through 509

2 510 Jornal de Pediatria - Vol. 78, Nº6, 2002 epidemiological surveillance of mortality it is possible to identify failures in health care. This should be an integral part of the implementation of health programs. Such observation, as a fundamental component of programs or services, allows a confrontation between standardized and actually executed activities, expliciting the weaknesses of health care, in addition to revealing access problems, which also contribute to the fragilization of the infant. 9 The epidemiological method is being incorporated into health assessment for the analysis of health service quality and is coming to constitute an essential stage in the process of planning and administrating the health sector, allowing for a rational decision-making process as far as the problems faced by health services are concerned. 10 Performance indicators are indirect assessments of quality, and are used as a a way to monitor and identify processes, services or professionals that could be causing problems or that require a more direct evaluation. They are expressed in terms of events, rates or causes. It is equally possible to measure the medical care patients are provided with as well as the results of such care. 11 Taking into account that death is the ultimate effect of a non-linear causal network with a variety of determinants, 8 the in-depth analysis of these determinants can be best understood by studying single or multiple cases. 12,13 The present study aims at inferring on the access to and quality of medical care provided by health services by way of surveillance of infant mortality. This is represented by the number of deaths at home and by the trajectory followed by mothers in search of care, during the course of the ailment. Methods The data used in this study are part of the evaluative research on the Analysis of Implementation of the Infant Mortality Reduction Project in two Municipalities With Similar Living Conditions in the State of Pernambuco. The study was approved by the Ethical Research Committee of the School of Medicine of Universidade Federal de Pernambuco, in This is a descriptive, cross-sectional, census-based study of a series of deaths of infants younger than one year in the municipality of Bom Conselho, between January 1st 1999 and December 31st This type of study was chosen because it allows the internal observation of the cases, offering a deeper analysis of a situation or phenomenon, with a high level of internal validity Bom Conselho is 204 Km away from the state capital and has 41,067 inhabitants, of whom 50.6% live in urban areas. It ranks in 84th and 56th places according to the Municipal Index of Human Development (IDH-M) and to the Living Conditions Index (ICV), respectively, out of the 184 municipalities within the state of Pernambuco. The town has a medium-sized hospital, a family health unit and Infant death surveillance as an indicator... - Frias PG et alii eight basic health units. The Community Health Agents Program (PACS), in effect since 1992, covers an estimated 70% of the population. The deaths were surveyed through the Mortality Information System (SIM) processing units and complemented by active searches in health units, registry offices, cemeteries - both official and not, and in the community by community health agents and traditional midwives. The reliability of the data, particularly those obtained from alternative sources, was cross-checked with age, types of death declared, death certificates and domestic and hospital investigations into the cases involved. The investigation consisted of a questionnaire applied in Rio de Janeiro by Duchiade 2 and of another questionnaire used by Escola Nacional de Saúde Pública (ENSP/FIOCRUZ -National School of Public Health) and by the State Department of Health of Pernambuco, 15,16 which were adapted to the objectives of the current study. The first questionnaire had been validated by Hartz et al. 7 and the second one by Leal et al. 15,16 The questionnaires contained closed and semi-open questions regarding socioeconomic background, obstetric history, and history of morbid events, with a special focus on the last episode. With regard to morbid events, questions related to the search for health care were asked, in order to elicit the date and time of consultation, type of service that was sought, location, distance from home address, health professional involved, conduct adopted, interval between consultations and purchase of medication. The data were collected from January and May 2000 by technicians from the epidemiological section of the Municipal Department of Health, previously trained to carry out home interviews with mothers, guardians or relatives. The information was obtained after verbal authorization and after the research objectives had been explained. Each questionnaire was checked by the coordinator, together with the interviewer. Unanswered questions and inconsistent or doubtful answers were resolved with further domestic visits or through reference to official documents (statements of live births and death certificates) In cases where there was medical care at health units, identified during the home interview, the patients medical records and forms were accessed in order to exclusively retrieve important information about the morbid process that resulted in death. In order to reconstruct clinical histories, the home interview, case reports obtained from health services, death certificates and birth certificates were used. The use of various documents was an attempt to obtain the greatest possible amount of evidence which could, to some extent, accurately elucidate relevant facts about the sickness and death of the child and which would contribute to increasing the explanatory power of the study. These documents were analyzed by three independent sanitarists, masters in mother-infant health, who used implicit technical and scientific quality criteria to reconstruct the clinical histories.

3 Infant death surveillance as an indicator... - Frias PG et alii Results Between January and May 2000, in the town of Bom Conselho, 72 deaths of infants younger than one year, which had occurred in 1999, were identified. Of these deaths, 71 were investigated, which represents a loss of only 1.4%. Certain biological characteristics of these children were analyzed and it was observed that 69.4% were found mainly in the 28 day to 11 month age group (postnatal period), predominated in males (62.5%), in full term newborns (81.7%) and in those with normal birthweight (60.6%) (Table 1). With respect to maternal characteristics, the majority of the mothers were in the 20 to 35 year-old age group (64.8%) and 60% of them had attended school for three years or less (Table 2). Although two thirds (67.6%) of the deaths occurred at home (Table 1), 77.5% of the children had been taken to health services at least once, and of these 8.4% had been taken four times, which means that 55 children were taken a total of 88 times to health services before death. Notwithstanding, 22.5% of the children had not been taken to any health service during the course of the disease that resulted in their death. Among the types of service sought, the majority were emergency services of public hospitals (65.1%), preferably located within the city of residence (78.5%), whereas the regional referral hospital, located in the neighboring town, was used in almost 16% of the 88 Jornal de Pediatria - Vol. 78, Nº6, incidents. With regard to the time taken to access the service, the majority (90.9%) were less than an hour s journey from the place of residence. (Table 3). With respect to the professional who provided medical care, 97% of the children were seen by doctors. Of the 88 consultations, 39.8% resulted in hospitalization, 8% in transfers to other units, and 27.3% were seen and discharged without follow up appointments being made. Notwithstanding, approximately 84% had access to all medications, either because they had been admitted to hospital (39.8%) or because they received the medications free of charge (44.3%). There was no reference to financial restraints that prevented purchase of medication (Table 4). Discussion Studies focused on infant death, through the use of home interviews, have been used as an appropriate tool for the diagnosis of mortality profiles and for studies about access to health services. 3,8-10,20 The investigation into the deaths of infants younger than one year in Bom Conselho provides food for thought about the profile of infant mortality and the quality of healthcare provided in small-sized towns in the northeastern hinterland of Brazil. The amount of information loss in home interviews was much less than expected, only 1.4%, which is a very low figure considering the time between the deaths and the Table 1 - Distribution of death frequency in patients younger than one year according to age, sex, birthweight, gestational age and place of death Death characteristics n % Age < 24 hours hours to 6 days to 27 days days to 11 months Sex Male Female Birthweight* < 1,500 g ,500 to 2,499 g > 2,500 g Gestational age* < 37 weeks > 37 weeks Place of death* Hospital Home Source: Research. * Total = 71 (one patient was not investigated)

4 512 Jornal de Pediatria - Vol. 78, Nº6, 2002 Infant death surveillance as an indicator... - Frias PG et alii Table 2 - Distribution of death frequency in patients younger than one year according to age and educational level of the mothers Maternal characteristics n % Age < 19 years to 34 years > 35 years Educational level (years) None to 3 years to 7 years to 11 years > 12 years Unknown Source: Research. interviews, also contrasting with other studies, such as the ones conducted by Duchiade et al. 2 in which the loss was 29% for neonatal deaths and 40% for postneonatal deaths, Macedo et al., 3 with a loss of 56.2%, Formigle et al. 21 with a 76.6% loss, and Barreto et al. 22 in which a 9% loss was observed. Problems with this study included memory and selection biases. The former is concerned with the time elapsed Table 3 - Distribution of death frequency of patients younger than one year according to the number, type and location of health services n % Number of services visited to None Total Type of service Health center Outpatient clinic of public hospital Emergency room Hospital/Maternity ward Other Total* Location Town of residence Regional referral State referral Other Total* Distance from place of residence < 1 hour hours > 3 hours Total Source: Research. * Some patients went to the same service more than once. This explains why the total number is 88 instead of children were not taken to any health service.

5 Infant death surveillance as an indicator... - Frias PG et alii Jornal de Pediatria - Vol. 78, Nº6, Table 4 - Distribution of death frequency of patients younger than one year according to the kind of professional in charge of medical care, the conduct used and purchase of medication n % Professional Physician Nurse Midwife Unknown Conduct Medical care without follow-up Medical care with follow-up Medical care and referral Hospitalization No medical care Other (observation) Purchase of medication Bought the medication Got free samples Bought/got some free of charge Could not buy 0 - No medical care Hospital Other Total Source: Research. between the event and the interview, which varied between one and twelve months, and the latter involves geographic, socioeconomic and cultural characteristics, which, despite the extensive, active search of death records, results in the underreport of socioeconomically underprivileged families. 23 The present study is believed to have identified practically all deaths of infants aged less than one year, since the Mortality Information System had registered 39 deaths, whilst the active search through alternative sources of information identified another 33 cases. A considerable number of these deaths occurred at home and in many cases health services were not looked for. Errors and omissions regarding the filling-in of medical charts should be taken into account, as in certain cases, they do not allow establishing an association between the reason for consultation and death, despite the mother s account. Aside from the biases, the validity of the selected performance indicator (the mothers search across medical services) is also a limitation. Travassos 11 describes two types of validity: causal and apparent. The causal type is related to the strong association, based on scientific knowledge, established between the health care process and the measurement of results employed 11 whereas the apparent type relates to a logical model used in this study. 11 Despite these limitations, we know that the major role of this type of information is to provide a basis for the development of policies and activities, with the aim of improving the quality of health care. By analyzing the results, we note that a significant number of these events occurred at home (67.6%), without any medical assistance. This situation is a reality in small cities in northeastern Brazil, as described by Hartz et al., who carried out studies in the municipalities of Assu (59.5%) and Caicó (42.6%) in the state of Rio Grande do Norte. 24 Barreto et al. studied infant mortality in three towns of the state of Ceará, which were well covered by the Community Health Agents Program (PACS) and by health services whose main focus was on primary health care, and found that 46% of deaths had occurred at home. 22 In medium and large-sized towns, however, deaths predominantly occur in hospitals, due to the prompt availability of medical care. In the metropolitan region of Salvador, 21 in Pelotas, 20 and in Rio de Janeiro, 2 these rates were significantly lower: 21.3%, 18.9% and 13%, respectively. It should be stressed that, in

6 514 Jornal de Pediatria - Vol. 78, Nº6, 2002 Infant death surveillance as an indicator... - Frias PG et alii Rio de Janeiro, the official statistics for deaths occurring at home was 7%, but the investigation of the medical records revealed that 6% had been dead on arrival, totaling 13% of non-hospital deaths. The search of mothers for health services indicates a quest for remedial care, expressed by the number of times the emergency services were sought (65.1%). A survey of homes carried out in São Paulo by Cesar and Tanaka 10 showed that the emergency room was the most frequently looked for health service in the last 15 days when morbidity was present (40.3%). Prompt health care, irrespective of whether appointment cards have been obtained as well as the possibility of having complementary exams, appears to be a decisive factor behind choosing an emergency room instead of health centers (18.2%), outpatient clinics (5.7%) or private clinics (2.3%). The less frequent preference for health centers may be related to the difficulty in arranging a medical appointment and/or the low success rate of the basic health system, or even, lack of orientation or the presence of other social factors. The participation of private services is nearly nonexistent due to the population s low purchasing power, aside from the paucity of such services in poverty-stricken regions of northeastern Brazil. Only one case sought private health care twice (2.3%). This contrasts with the study conducted by César and Tanaka in São Paulo, in which the preference for private clinics and practices and for franchised services amounted to 20.1%. Nonetheless, these authors recognize the importance of public services as health care providers for the majority of the population. 10 On the other hand, emergency care, with 24-hour on-call professionals who are more concerned with the treatment and solution of serious cases and immediate complaints, by virtue of their high qualification, could jeopardize the status of emergency rooms, since these professionals do not see the child as a whole, do not follow the progress of the disease and, more often than not, do not tell the mothers under which circumstances they should return. It is also possible that the severity of the disease is not always identified correctly since numerous children who subsequently died had been discharged after consultation. It should be underscored that in the municipality in question the on-call professionals at emergency rooms are clinicians and that there is only one pediatrician in the city assigned to an outpatient clinic. As far as the discrepancy in the levels of complexity between the health units in Bom Conselho and Rio de Janeiro are concerned, the incapacity to detect the severity of the cases and the lack of an adequate transportation system were a common denominator in both studies in that 74% of non-hospital deaths in Rio de Janeiro corresponded to discharges by the health services, as occurred in Bom Conselho. A considerable percentage of the mothers in the current study (22.5%) did not seek any health service for the treatment of their children. This could be related to the nonexistence of professionals at the health units in the vicinity where the patients lived, problems with transport and access, lack of reliability in the services, failure of the mother to recognize the severity of the disease, or also cultural patterns of regions where infant natality and mortality are still high. Hartz 24 attributes the high number of deaths at home to the lack of reliability in the services. Conversely, some mothers took their children to health services three or more times (8.4%), twice (26.8%) or at least once (42.3%) before they died. Duchiade et al. found that, in Rio de Janeiro, 38% of the neonatal cases had been cared for at health services once, twice or more times before death, as against 63% of postneonatal cases, of which 25% were hospitalized in the week that preceded their death. 2 Macedo et al., in Salvador, verified that there had been three consultations for every two children, out of the 165 families interviewed. 3 In Ceará 22 79% of the cases had sought health care, a rate that was similar to that obtained in Bom Conselho (77.5%). The high frequency at which health units were sought may suggest inability of the professionals to detect and treat serious cases, or even inefficiently structured services. This assumption is corroborated by the high percentage of consultations made prior to out-ofhospital deaths(48). Approximately 31 children (64.6%) were taken to health services up to four times, a fact that is extremely serious considering that 97% of these children were treated by doctors. This result indicates that there must be continued educational programs for professionals who work in these units, so that the quality of health care can be improved. On top of that, more technicians have to be hired and adequate equipment supplied, in order to improve working conditions as well. It should be noted that death is unlikely to have occured because of geographically difficult access areas, since the great majority (91.1%) of services were less than an hour s journey from the patient s place of residence. Only four health services (7.4%) were one to three hours away from the place of residence, regardless of the means of transportation used. The distance between the urban perimeter of Bom Conselho and Garanhuns (a regional referral municipality, whose demand reached 15.9%) is covered in less than an hour and only residents of the rural area took longer than this. César and Tanaka 10 found, in São Paulo, variations in the percentage of attendance within the patient s own municipality of residence (54.7% to 95.3%), while Bom Conselho occupies an intermediate position (78.5%). The authors attribute these figures to the low capacity of the local public sector to attend to the population and the great need to improve mother-infant services, and they point out the difficulties in implementing local health programs, due to the low level of coverage and the mass exodus in search of health services in other municipalities. 10 Of 88 consultations, 39.8% resulted in hospitalization and 2.3% in observation within the unit and subsequent discharge. Almost 30% were seen and had follow-up appointments made or were transferred, indicating recognition of the need for observation or for relevant

7 Infant death surveillance as an indicator... - Frias PG et alii therapy offered by other services. Nevertheless, 27.3% of the children were seen without any follow-up appointment being made, probably due to the failure to perceive the degree of severity or perhaps to a lack of clinical definition of the case for seeking the health service too early. This fact could be associated with a lack of organization and integration of services with the Family Health Program or with the Community Health Agents who could monitor these children potentially at risk, breaking the chain of vulnerability through an educational approach and surveillance, and therefore prevent many of these deaths. In the study by Barreto et al., 22 in Ceará, the agents were mentioned by less than 30% of the families investigated, although they notified most of the deaths. This indicates that health agents are not recognized by the services and families; these professionals possibly function as reporters of these events. Another point which was analyzed was the purchase of medication prescribed by the services. It was confirmed that the administrators had fulfilled their tasks with respect to the supply of medication, since in only 6.8% of the consultations was there any need to purchase one of the medicines prescribed, and nobody refrained from using the prescribed medications because they could not afford them. Based on the results found it is possible to say that the large number of deaths at home, many of which are invisible to official statistics and are identified only by active search, points to difficult access to health services. In addition, the search of mothers for health services also raises questions about the quality of health care in the municipality concerned, since many of the deaths occurred after the child had been seen and even hospitalized. The results also suggest problems with the organization of the health system, such as a lack or hierarchies, indefinite referrals and nonexistent counterreferrals, and also the need for municipal administrators to evaluate the functionality of the health care model and the investments destined for the hiring and qualification of health professionals and doctors who take care of children, taking into account the absolute paucity of pediatricians in the local health system. References 1. Murnaghan JH. Health indicators and information systems for the year Ann Rev Public Health 1981;(2): Duchiade MP, Carvalho ML, Leal MC. 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8 516 Jornal de Pediatria - Vol. 78, Nº6, Puffer RR, Serrano CV. Caracteristicas de la mortalidade em la ninez. Washington, DC: OPS (Organización Panamericana de la Salud), OMS (Organización Mundial de la Salud); Hartz ZMA, Champagne F, Contandriopoulos AP, Leal MC. Avaliação do programa materno-infantil: análise de implantação em sistemas locais de saúde no Nordeste do Brasil. In: Hartz ZMA, organizadora. Avaliação em saúde: dos modelos conceituais à prática na análise da implantação de programas. Rio de Janeiro: Fundação Oswaldo Cruz (FIOCRUZ); p Puffer RR, Serrano CV. Caracteristicas de la mortalidade em la ninez. Washington, DC: OPS (Organización Panamericana de la Salud), OMS (Organización Mundial de la Salud); Infant death surveillance as an indicator... - Frias PG et alii 24. Hartz ZMA, Champagne F, Contandriopoulos AP, Leal MC. Avaliação do programa materno-infantil: análise de implantação em sistemas locais de saúde no Nordeste do Brasil. In: Hartz ZMA, organizadora. Avaliação em saúde: dos modelos conceituais à prática na análise da implantação de programas. Rio de Janeiro: Fundação Oswaldo Cruz (FIOCRUZ); 1997.p Corresponding author: Dr. Paulo G. Frias Rua Jornalista Edmundo Bittencourt, 75 ap. 402 CEP Recife, PE, Brazil Tel.: