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The case for worker notification.

There is currently a heated debate about whether the U.S. Congress should enact the High Risk Occupational Disease Notification and Prevention Act. This Act would set up an orderly system for identifying, notifying, and assisting workers at high risk of occupational disease. Significant underpinning for this legislation comes from three pilot projects conducted by the National Institute for Occupational Safety and Health and the Workers' Institute for Safety and Health. These projects demonstrate that notification and intervention for occupational high-risk groups can be implemented feasibly within the existing structures of community health and labor management relations. These projects also suggest that, contrary to the views of opponents of current legislation, it is the absence of systematic programs that leads to massive litigation and high costs. At present, these costs are borne by workers and society.

Humans

Tuberculosis in children: a national survey of notifications in England and Wales in 1983. Medical Research Council Tuberculosis and Chest Diseases Unit.

A survey of all notifications of tuberculosis in children (aged less than 15 years) in England and Wales in 1983 showed a decline of 35% in the estimated annual number of previously untreated children notified since the previous survey in 1978-9. Of the 452 children in the 1983 survey, 217 (48%) were of white, 79 (17%) of Indian, and 104 (23%) of Pakistani or Bangladeshi ethnic origin. The decline in the number of Indian children notified (46%) was much greater than that for Pakistani and Bangladeshi children (16%). In both surveys the estimated annual notification rate was much higher for the Indian and the Pakistani and Bangladeshi ethnic groups (32 and 52/100,000, respectively in 1983) than for the white group (2.4/100,000 in 1983). The mean annual decline in rate between the two surveys was 14% for the Indian, 10% for the Pakistani and Bangladeshi, and 7% for the white children. In both surveys the rates for the children of Indian subcontinent (Indian, Pakistani, and Bangladeshi) ethnic origin born in the United Kingdom were considerably lower than for those born abroad. Of the 452 children in the 1983 survey, 342 (76%) had respiratory disease (including 26 (6%) with a non-respiratory lesion as well). Less than half (134, 45%) had a pulmonary lesion at independent assessment of chest radiographs, a further 115 (38%) had only enlarged intrathoracic nodes. Only 60 (19%) of the children with respiratory disease only had a positive culture from a respiratory specimen, but the culture positivity rate in those tested was 45%. Almost two thirds of the children with non-respiratory disease had lesions of the extrathoracic nodes, nearly all cervical. There were 20 children with tuberculosis meningitis in the 12 months, including 12 (6%) of the 217 white and six (3%) of the 183 children of Indian subcontinent ethnic origin.

Adolescent

Completeness of statutory notification for acute bacterial meningitis.

Several different sources of data, including statutory notifications, were used to identify cases of acute bacterial meningitis in childhood in a defined population. Only half the cases of meningococcal meningitis and less than one quarter of ofther types of bacterial meningitis had been notified. Notified cases differed from the remainder with respect to causative organism, age, outcome, and type of hospital of admission. Thus notifications are an unreliable measure of incidence for this disease, and studies of infectious disease based on notified cases alone should be interpreted with considerable reserve. It is suggested that infectious-disease surveillance should be both clinical and microbiological and that data from different sources need to co-ordinated. The reason for reporting each disease (or organism) should be specified and and reviewed periodically.

Bacterial Infections

National survey of notifications of tuberculosis in England and Wales in 1983. Medical Research Council Tuberculosis and Chest Diseases Unit.

In a survey of all notifications of tuberculosis in England and Wales for the first six months of 1983 56% of the 3002 newly notified patients who had not been treated before were of white and 37% were of Indian subcontinent (Indian, Pakistani, or Bangladeshi) ethnic origin, findings similar to those of a survey in 1978-9. In the four and a quarter years between the surveys the number of patients notified had declined by 26%, the decline being 28% among those of white and 23% among those of Indian subcontinent ethnic origin. The white patients were on average older than the patients of Indian subcontinent ethnic origin, and a higher proportion of them had respiratory disease (82% compared with 66%). The pulmonary lesions were on average larger and more often bacteriologically positive in the white patients. There were considerable differences between the ethnic groups in the estimated yearly rates of notifications per 100 000 population in England in 1983. The highest rates occurred in the Indian (178) and the Pakistani and Bangladeshi (169) populations and were roughly 25 times the rate in the white population (6 X 9). In the Indian subcontinent ethnic groups the highest rates occurred among those who had arrived in the United Kingdom within the previous five years.

Age Factors

The value of England and Wales congenital malformation notification scheme data for epidemiology: male genital tract malformations.

Data from the England and Wales national congenital malformation notification scheme were examined for associations of male genital tract malformations. For some of the malformations comparison of notification rates with the literature suggested gross undernotification. There was also evidence suggesting bias: examination of the relationships of the malformations to birth weight, maternal parity, and maternal age at delivery showed some highly significant trends in risk, most of which were at variance with findings in the literature, and several potential mechanisms for bias could be adduced. Direct investigation is needed, for this and other similar data sets, of the extent and mechanisms of biased undernotification.

Birth Weight

Sexually transmitted diseases in Italy: clinical returns versus statutory notifications.

Sexually Transmitted Diseases (STD) surveillance has caught the attention of the Italian public health authorities during the past decades. The spread of HIV infection increased the awareness of the need for a better STD surveillance system. This paper reports a retrospective survey of STD clinics in Italy, intended to form an epidemiological base for further development of STD surveillance. The data for 1986-87 and 1988 on a predefined set of diseases, all of them sexually transmitted, were collected from 85 of 127 centres contacted. The data obtained offer the first national figures for some STD not included in the statutory notification list, such as chlamydial infection, herpes and genital warts, as well as HIV infections. Those data show an increase in time frequencies. For gonorrhoea and syphilis, it was possible to compare our data with statutory notifications, showing a large gap between notified and reported cases. This gap is not stable in time (increasing in time) or in geographical area (increasing from north to south).

Gonorrhea

Types of opiate addiction and notification to the home office.

Hospitalised drug addicts were categorised according to the time lapse between onset of their opiate abuse and their first notification to the Home Office. Late notification correlated with a lower level of dependence, a more intermittent pattern of misuse, and a greater likelihood of alcohol abuse. It is postulated that there may be two types of addiction which lie along a continuum.

Adult

Cancer risk notification: psychosocial and ethical implications.

Basic and medical science investigations have identified a growing number of risk factors important in carcinogenesis. By communicating cancer risk information in medical practice, we have the potential to motivate high-risk individuals to adhere to cancer prevention and surveillance protocols. However, cancer screening and risk notification might have adverse psychologic and social consequences as well. In this review, we address the psychosocial and ethical implications of cancer risk notification. The literature on the psychosocial impact of cancer screening programs and programs for notifying workers exposed to occupational carcinogens is reviewed critically. In addition, we examine new concerns and responsibilities raised by the emerging field of cancer genetics. Suggestions for future research and for patient education are addressed.

Comprehension

To tell or not to tell: the ethical dilemmas of HIV test notification in epidemiologic research.

Epidemiologic studies involving HIV (human immunodeficiency virus) antibody testing create ethical dilemmas, particularly about notifying asymptomatic seropositive subjects. Four study designs address this problem: mandatory notification, optional notification, anonymous testing, and blind testing. No single design consistently optimizes the trade-off between valid and ethical research. Each strategy differs substantially from the others in its effect on response rates, bias, ability to perform longitudinal studies, numbers of subjects who learn their test results, and the number of subjects counseled about HIV risk reduction. Both local institutional review boards and potential subjects of study (and their sexual partners) should participate in decisions regarding the conduct of sensitive AIDS (acquired immunodeficiency syndrome) research.

Epidemiologic Methods

Partner notification: can it control epidemic syphilis?

STUDY OBJECTIVE: During 1987, the rate of syphilis among heterosexual adults in Oregon increased 159%, yet the number of cases of gonorrhea remained stable. Our study was done to evaluate why the same control measures contained gonorrhea but not syphilis in this population. DESIGN: Exploratory case-control study. SETTING: Public health clinics in Portland, and Salem, Oregon. PATIENTS: All 146 heterosexual adults with early syphilis and all 164 heterosexual adults with acute gonorrhea reported to the public health clinics during April to July 1988. INTERVENTION: A questionnaire was administered to all syphilis case-patients and control patients (those with gonorrhea) at the beginning of the routine, sexually transmitted disease (STD), investigative interview. MEASUREMENTS AND MAIN RESULTS: Syphilis case-patients had contact with an average of 5.0 sex partners for whom they could not supply locating information sufficient to initiate partner notification. In contrast, patients with gonorrhea had contact with an average of 0.4 sex partners for whom they could not supply locating information (P less than 0.005). The 28% (41 of 146) of syphilis case-patients who reported having exchanged sex for drugs or money accounted for 72% (527 of 729) of the unlocatable partners exposed to syphilis. In contrast, the 17% (28 of 164) of patients with gonorrhea who reported having exchanged sex for drugs or money accounted for 36% (25 of 69) of the unlocatable partners exposed to gonorrhea. CONCLUSIONS: Because patients infected with syphilis have relatively large numbers of anonymous sexual encounters, prevention strategies that supplement partner notification are urgently needed to control the syphilis epidemic among adults.

Adolescent

Critical limits for emergency clinician notification at United States children's hospitals.

Critical results demand rapid patient evaluation, possibly followed by life-saving intervention. A national survey of children's hospitals determined the critical limits used for emergency notification of critical laboratory results. Mean low and high critical limits for children for the tests listed most frequently were as follows (millimoles per liter): glucose, 2.6 and 24.7; potassium, 2.8 and 6.4; calcium, 1.62 and 3.17; and sodium 121 and 156. For newborns, significantly different (P less than .01) critical limits were glucose, 1.8 and 18.2; and potassium, 7.8. Hematology mean critical limits for children included hemoglobin, 69 and 208 g/L; platelets, 53 and 916 x 10(9)/L; hematocrit, 0.20 and 0.62 L/L; and white blood cell counts, 2.1 and 42.9 x 10(9)/L. Critical limits for pH were 7.21 and 7.59; for PCO2, 21 and 66 mm Hg; and for PO2, 45 and 124 mm Hg. Important qualitative critical results included blasts on the blood smear and abnormal cerebrospinal fluid findings. In comparison with other medical centers, children's hospitals maintained tighter critical limits for surveillance of renal function, hemostasis dysfunction, and newborn hypokalemia. Use of these results to eliminate outliers can help reduce unnecessary statim notification and improve resource utilization for the acute diagnosis and treatment of critically ill newborns and children.

Chemistry, Clinical

AIDS contact notification: initial program results in New Jersey.

As part of an 1988-89 evaluation of New Jersey's newly established HIV Notification Assistance Program (NAP), data were collected concerning number of HIV+ persons providing contact names; contact characteristics; reactions to NAP of HIV counselors, their clients, and of notified contacts; and program costs. There was initial resistance to the program both from HIV counselors and their clients. By mid-1989, acceptance of the program by referring HIV counselors had increased. The proportion of HIV+ clients who referred contacts was still low, but had increased to 10%. 160 contacts were notified: 72% sexual contacts and 28% needle sharing contacts, 59% male and 41% female, 58% black, 29% white, 13% Hispanic. 67% considered themselves at moderate or high risk for HIV; 31% stated that they had already been tested for HIV, with 7% having tested positive. Cost per notified contact was $2,260; cost per contact not previously tested HIV+ and unaware of risk was $3,014. Findings suggest that persuading counselors at HIV counseling and testing sites of the program's value is a key prerequisite for success, in situations where notification is carried out by a separate agency. Once the program has been in place for a time and has established credibility, the opportunity exists for initial resistance to be overcome.

AIDS Serodiagnosis

Ethical issues in administrative continuous improvement. Applying the concept of prior notification to the conduct of firm trials.

Consensus exists concerning the distinctions to be drawn between clinical practice and research. When the latter is undertaken, established regulations require that protocols including plans for obtaining subjects' informed consent be submitted to Institutional Review Boards for approval. Less consensus or codification exists concerning evaluations conducted by managers in health care settings. The recent development of firm systems, in which randomized, controlled designs are employed to evaluate administrative interventions, provides a unique context in which to consider whether the subjects of administrative evaluations should be afforded protections granted subjects of clinical research. Accordingly, the history of firm trials from an ethical perspective is reviewed. At the University of Washington, participants of such studies are informed through the process of prior notification, an adaptation of procedures employed widely to inform patients that records or specimens may be used in epidemiologic or biomedical research. Prior notification appears to be a useful refinement of the firm system methodology, one that may have application to managerial manipulations in other arenas.

Behavioral Research

[Evaluation of sick leave notification II--a certificate for more than eight weeks sick leave. From the project Evaluation of follow-up of long-term sick leave patients].

An increase in sick leave has been registered by both the National Insurance Administration and by the Confederation of Norwegian Business and Industry. In 1988, expenditure on sick leave was NOK 20.7 billion. The same year the National Insurance Institution found that the average length of each sick leave was 49 days. An arrangement for notification of sick leave was enforced in order to strengthen follow up of persons in receipt of sick pay who had been off work for more than eight weeks. Our survey in Skedsmo shows that this arrangement is not commonly known among the public. In view of the increasing public consciousness about national insurance in general, the doctors who are required to submit notification of sick leave are of the opinion that this arrangement is a useful venture. It is difficult to conclude, however, that this arrangement has been of any benefit to the individual patient. The national insurance office has registered a decrease in expenditure on sick leave, but the work load of officials in the administration has increased.

Absenteeism

Notification of HIV carriers: possible effect on uptake of AIDS testing.

Passing of the AIDS Prevention Bill, which demands the notification of human immunodeficiency virus (HIV) carriers, seems imminent in Japan. Its effect on people's willingness to be tested for the HIV antibody was assessed among heterosexual subjects (students, office workers) and groups at high risk of the acquired immunodeficiency syndrome (AIDS) (prostitutes, homosexual males) by means of a questionnaire. More than 70% of the 811 students and 509 workers replied that, if notification became mandatory, they would agree to be tested but 10% of the males and 17% of the females in these two groups would prefer testing at institutes not complying with the clause; all 198 prostitutes said that they would be prepared to undergo testing but 35% of them would prefer to go to non-complying clinics; 45% (410) of 902 homosexual males replied that they would refuse testing, and 65% of those who would agree to be tested (492) would prefer to go to non-complying clinics. These findings strongly suggest that when the bill is passed the greater the self-perceived risk of HIV infection the poorer will be the uptake of AIDS testing. Hence the bill would be counterproductive in the surveillance of potential HIV carriers.

Acquired Immunodeficiency Syndrome

Risk for bladder cancer. Psychological impact of notification.

Informing persons that they have been exposed to a carcinogenic chemical (beta-naphthylamine) may adversely affect these persons and their families. The purpose of this study was to identify and assess the psychological impact of a bladder cancer notification and screening program on persons at risk and their families. Approximately 140 subjects were randomly selected from 850 workers exposed to beta-naphthylamine. The Family APGAR, Impact of Event Scale, and Improved Readability Form of the Minnesota Multiphasic Personality Inventory were administered within four weeks of the initial medical screening and readministered six months later. Results show no evidence of disruption to families or substantive psychopathology among these persons. While the actual acquisition of cancer is undoubtedly a psychological trauma, mere notification of risk may not be traumatic in every situation.

2-Naphthylamine

Decreasing the incidence of surgical wound infections. Validation of a surveillance-notification program.

In an attempt to validate the observations of a previously published ten-year study of surgical wounds, we studied 8,474 wounds over an 18-month period using a protocol nearly identical to that of the previous study. Our study corroborated the following predictors of clean-wound infection: increasing duration of surgery, age less than 1 or greater than 50 years, increasing duration of preoperative hospitalization, use of drains, and shaving and emergency surgery. We failed to corroborate use of wound irrigation as a protective measure or time of preoperative shaving as a significant variable. Most importantly, we found a 42% reduction in the clean-wound infection rate during the study period (1.9% to 1.1%), adding support to the concept that a wound surveillance program with surgeon notification is both efficacious and cost-effective.

Adolescent

Drake Chemical Workers' Health Registry Study: I. Notification and medical surveillance of a group of workers at high risk of developing bladder cancer.

A medical surveillance program and epidemiologic study of 408 former workers of the Drake Chemical Company (now a Superfund waste site) was established in 1986. The Drake Health Registry Study was initiated because these workers had probable past exposures to beta-naphthylamine (BNA), a potent bladder carcinogen. The registry is widely viewed as a model for notification of workers at high risk of disease due to past occupational exposures. By the 40th month, 90% of the 366 living workers had been notified of the existence of the registry; 262 had been enrolled in the annual or semi-annual screening for bladder cancer. Among these, 27 persons have had abnormal screening results indicating moderate to high risk of bladder cancer and have been made eligible for further diagnostic tests. While no invasive bladder tumors were found among 18 persons completing the extended diagnostic evaluation, two diagnoses of moderate to severe dysplasia have been made. The registry has also identified three living and three deceased cases of bladder cancer in the cohort; a mortality analysis showed a 20- to 30-fold excess of bladder cancer. An incidence projection, based on the six identified cases, reveals that between six and ten new bladder cancer cases are likely to occur among the Drake cohort over the next 20 year period.

2-Naphthylamine