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The completeness of cancer registration in follow-up studies--a cautionary note.

In Britain the National Health Service Central Registers (NHSCRs) provide the facility for a study population to be 'flagged', initiating a system of notification to investigators of deaths and cancers that occur in the population. This system of notification is an invaluable resource for epidemiological research. A comment on its efficiency is provided here by a comparison of the system with an independently ascertained series of breast cancers. Fifty verified breast cancer cases were identified during a study of a flagged cohort of British women taking hormone replacement therapy. At the time of analysis (May 1985), some 2.5 years after diagnosis of the most recent case, twenty-eight of the 50 cases had not been notified to the investigators by the NHSCRs. Of these, fourteen had not been registered. Eight had been duly registered, but had not yet been recorded at the NHSCRs. Five of the remaining six cases were in the process of being notified. The implications of these findings for cancer researchers are discussed. The potential for omission and delay between the diagnosis of cancers in a flagged population and their notification to the investigators must be taken into account, if underestimation of the true level of cancer risk is to be avoided.

Breast Neoplasms↗

Non-accidental fractures in infants: risk of further abuse.

OBJECTIVES: To look for features of non-accidental fractures in infants aged under I year and assess the risk of subsequent morbidity and mortality. METHODOLOGY: A retrospective analysis of 99 children aged under 1 year who presented to the Mater Children's Hospital, Brisbane, between January 1990 and December 1993, and were found to have a fracture. The 99 infants were divided into non-accidental and accidental groups. Comparison was made between the two groups for age, sex and type of fracture. Deaths, subsequent injuries and child protection notifications until March 1997 were compared between groups. RESULTS: Of the 99 infants with fracture (64 males, 35 female), the skull and femur were the most prevalent sites of fracture. Twenty-six infants had fractures assessed as non-accidental. This group was younger but did not differ significantly in gender or site of fracture. Infants aged under 4 months had a significantly greater risk of their fracture being non-accidental (P = 0.0007). Subsequent substantiated child protection notifications occurred in nine of the non-accidental group and in one of the accidental group (P = 0.000001). There was no significant difference in the rate of subsequent notifications between those infants with abuse who were removed from their carers and those not removed. Subsequent injuries presenting to hospital occurred in 17 of the accidental group and three of the non-accidental group (P = 0.20). There were no deaths. CONCLUSION: Infants aged under 1 year with fractures have a high prevalence of abuse. The risk of abuse as cause for the fracture is greater in those aged under 4 months. Infants with non-accidental fractures have a high risk of further abuse even with intervention.

Accidents↗

Evaluation of the effectiveness of targeted lookback for HCV infection in the United States-interim results.

BACKGROUND: As part of a nationwide program to identify persons at increased risk for HCV infection, persons who received blood from donors who later tested positive for anti-HCV are being directly notified. STUDY DESIGN AND METHODS: In December 1999, all 198 blood collection establishments (BCEs) and 5442 hospital transfusion services (TSs) in the United States were surveyed by mailed questionnaire to evaluate their progress in carrying out this notification. RESULTS: Eighty-one percent of the BCEs and 64 percent of the TSs responded. After correcting for nonresponse, an estimated 98,484 components at potential risk for transmitting HCV, according to previous testing of multiantigen-screened donors, were identified nationwide, of which 85 percent had been transfused to recipients. Lookback for these recipients was completed for 80 percent, of whom 69 percent had died. Of those living, 78 percent were successfully notified. An estimated 49.5 percent of those notified were tested; 18.9 percent of those tested were anti-HCV positive, and 32 percent of that group knew they were positive before notification. On the basis of an 85.5 percent reported completion rate for component notifications back through 1988, an estimated 1520 persons will have been newly identified as anti-HCV-positive when lookback related to multiantigen screening of donors is completed. CONCLUSION: Targeted lookback related to previous multiantigen screening of donors will identify <1 percent of the estimated 300,000 HCV-positive persons in the United States who may have acquired their infection via blood transfusion.

DNA, Viral↗

[New challenges to the Screening Center in the Bavarian State office for Health Care and Safe Quality of Foods].

UNLABELLED: AIM of the newborn screening model programme implemented in Bavaria, Germany, in 1999 was earliest possible and complete detection of all children with treatable severe inborn errors of metabolism. This was to be achieved by the introduction of new laboratory methods (expanded disease coverage, earlier blood take) and of a tracking system to ensure complete access for all newborns and complete requested repeat testing. Long-term prognosis of the newly screened disorders is to be investigated. The model programme "newborn hearing screening in Bavaria" started in 2003 in the administrative district Oberpfalz aims at testing, whether tracking is also suitable to achieve early detection of all children with inborn severe hearing defects. METHODS: To attain these goals a central state screening centre was established. Demographic tracking coordinated by this centre is achieved by matching screening notifications with all birth notifications on name on a regional basis and individual contacts with parents of children with missing screening notification. In addition, all pending recalls are consequently tracked by case-specific contacts. This system was initially introduced for metabolism screening and is currently being implemented also for hearing screening of newborns. Both screening programmes are being scientifically evaluated. Children with disorders detected by screening are followed up in a long-term study by the screening centre. Written consent by the parents is requested yearly at the childs birthday regarding medical care, knowledge of the disease und health development of the child. RESULTS: 470,247 newborns were tested for treatable inborn errors of metabolism from 1999 to 2002. With the introduction of tracking, the documented participation rate increased from previously < 80 to 98.5 %. Due to tracking 99.2 % of requested recalls could be achieved. In 14 cases diagnosis was made, respectively therapy was initiated first after intervention by the screening centre. Altogether 368 children affected by the target disorders of the programme were detected. 332 children could be included in the long-term follow up study. Besides encouraging results, this study reveals deficits in parental information, provision with emergency cards, expert medical consultation, and sometimes treatment not according to the guidelines. Corresponding data from the hearing screening programme are not yet available. CONCLUSION: The establishment of an independent state screening centre has proved very valuable. It enables comprehensive state-wide demographic tracking despite several laboratories engaged in screening for inborn errors of metabolism. A long-term follow-up study has proved to be effective in this setting.

Child↗

Notifying individual students of a death loss: practical recommendations for schools and school counselors.

Although there is a growing body of literature focused on child and adolescent grief, surprisingly little information addresses the needs of school communities with regard to death. The emerging literature has focused primarily on crisis management when someone within the school community dies. Neglect has been the more common occurrence in which an individual child must be notified of the death of someone close. This article provides practical recommendations for schools and school counselors regarding preparation and follow-up associated with individual death notification situations, as well as specific suggestions pertaining to the who, when, where, and how of notification. Recommendations offered are based on a synthesis of relevant research and literature (e.g., children and death, general death notification, school culture), the clinical experience of the authors, and the collective wisdom of a sample of school counselors currently working in the field.

Adolescent↗

Gait disturbance interpreted as cerebellar ataxia after MMR vaccination at 15 months of age: a follow-up study.

Measles, mumps and rubella (MMR) vaccination was included in the Danish childhood vaccination programme in 1987. During the following 10-y period, 550 notification records of adverse events after MMR vaccination at 15 mo of age have been registered, and a total of 41 notifications have included "gait disturbance". This corresponds to a frequency of 8 per 100,000 doses of MMR vaccine used for 15-mo-old children. The symptoms and signs are characteristic of cerebellar ataxia. In 28 notifications, the descriptions by the doctors included only "gait disturbance", while in 13 an additional interpretation was included. Thirty-two parents (78%) filled in a questionnaire and 26 (63%) agreed to participate in a clinical follow-up study. The gait disturbance symptoms mainly occurred 7-14 d after the vaccination, and the duration was median 1-2 wk (range 1 d to more than 4 mo). One-third of the children had symptoms lasting more than 2 wk. Significantly more children with long duration of symptoms had some kind of complaint or clinical signs at the follow-up in 1997. Gait disturbance registered after MMR vaccination seems to be more frequent than hitherto reported. Most cases are mild and short-lasting and a longer duration of symptoms seems to be predictive of late sequelae. A clinical diagnosis of cerebellar ataxia after MMR and the exact frequency of this adverse event remains to be tested in prospective studies.

Age Factors↗

How HIV infected haemophiliacs in Japan were informed of their HIV-positive status.

The purpose of this study is to find out how HIV-infected haemophiliacs were informed and notified of their HIV infection. Self-reporting questionnaires were mailed to approximately 500 patients, about one half of the haemophiliac patients with HIV in Japan. The response rate was about 57% (n=283); and 270 (male=269) patients, apart from secondary and tertiary infected patients, were eligible as subjects for the study. The mean age was 31.2 +/- 9.9 years. Of these subjects, approximately 60% did not receive explanation regarding the risk of HIV infection via unheated blood products. More than 60% did not receive notification until 1990, or five years after the test became available in Japan. Contents of the explanations being given at the time of notifications were poor. In this paper, some problems of notifications of medically induced HIV are discussed, and the lack or delay of explanation/notification is concluded to be a consequence of the paternalistic attitudes of Japanese physicians and the iatrogenic nature of HIV infection.

Adolescent↗

Nail primer cosmetics: correlations between product pH and adequacy of labeling.

BACKGROUND: We have previously reported on injuries suffered by young children exposed to methacrylic acid-containing nail primers and the need for public education efforts concerning this potential household hazard. However, some primers contain alternative ingredients, which may or may not pose the same risk; product labeling information is variable and may be confusing to consumers. OBJECTIVE: To investigate the relationship between pH of different primer products, product contents, and appropriateness of product labeling and packaging. METHODS: Twenty-three commercially available primers were grouped by product contents: (methacrylic acid vs others). Product pH was measured and product labels were scored on 7 warning points: "poison and/or corrosive," a "caution to avoid contact and/or to use a barrier when handling the product," a "skin first aid," and "eye first aid," an "ingestion first aid," a caution to "keep out of reach of children," and a "in emergency, contact a poison center." A summative "global hazard notification score" was calculated for each product. Data were analyzed using correlations and the two-sample t-test. RESULTS: None of 23 products tested were contained in a child-resistant container and none included all 7 label items. Product pH ranged from 1.90-8.55 (mean pH 4.59 +/- 1.99); 20 products had pH < 7.0. Only 1 product advised, in the event of a poisoning, that a poison center be contacted. Of 20 acidic products, only 7 alerted users that the contents could cause burns. The mean global hazard notification score (MAX = 7) was 3.6; global hazard notification score did not correlate with pH. Methacrylic acid-containing products had a lower pH (mean 3.43 +/- 0.78) than those without methacrylic acid (mean 5.34 +/- 2.18), p = 0.008. When the primer bottle was separated from the rest of the packaging which comprised the artificial nail "kit," 50% of products lost all of their warning information. CONCLUSIONS: Most, but not all, artificial nail primers analyzed in this study were highly acidic. Labeling and packaging of many nail primers are inadequate, given the potential of methacrylic acid in these products to cause burns and the toxicity of most nail primers. We agree with the Consumer Product Safety Commission's recently proposed rule to require cosmetic manufacturers to repackage methacrylic acid-containing household products in child-resistant containers. We also urge manufacturers to alert consumers to the hazards of nail primers by better labeling. Manufacturers should also investigate the feasibility of either substituting other chemicals or lowering the concentration of methacrylic acid.

Cosmetics↗

Use of the internet to enhance infectious disease surveillance and outbreak investigation.

Modernization of electronic communication systems to facilitate infectious disease surveillance and outbreak investigation became a priority after the 2001 anthrax attacks. However, the extent to which communicable disease investigators are using web-based information resources, e-mail notifications, or secure information exchange systems to facilitate surveillance is unknown. To address this question, we conducted a survey in 2004 of state and local communicable disease investigators responsible for infectious disease surveillance and outbreak investigation in three states. The majority (70.7%) of the 297 respondents accessed the Internet for information regarding infectious disease surveillance and outbreaks at least weekly. Most (74%) respondents who searched for information from the Centers for Disease Control and Prevention (CDC) website reported that they found what they were looking for 75-100% of the time, compared with 54% who found the information from their state health department websites 75-100% of the time. One-third of respondents read e-mail notifications regarding outbreaks under investigation in their state less frequently than monthly; 34% of those enrolled in CDC's Epidemic Information Exchange (Epi-X) read e-mail notifications of new reports less frequently than monthly. Forty-seven (18%) respondents read ProMED-mail at least monthly, while 46% indicated they had never consulted MEDLINE/PubMed. Some progress has been made in use of the Internet to facilitate communication in infectious disease surveillance and outbreak investigation. Addressing barriers to access and usability of new information systems in conjunction with training and technical support could enhance infectious disease surveillance and timely investigation of outbreaks and bioterrorism events.

Centers for Disease Control and Prevention, U.S.↗

Current impact of measles in the United Kingdom.

Annual measles notifications in the United Kingdom continue to exceed 100,000 despite the introduction in 1968 of routine measles vaccination for children aged one to two years. One in 5,000 children with notified cases of measles die; complications of the disease remain similar in incidence and severity to those observed in 1963. The overall vaccine acceptance of 50% has reduced notifications of disease primarily among children aged one to four and five to nine years. In areas where vaccination acceptance is higher than the national average, there has been a reduction in notifications for all age groups. Schwarz strain vaccine, which has been in use since 1968, has been shown to give protection lasting up to 16 years. Despite the reduction in the incidence of measles and the low acceptance of vaccine, no apparent increase has been found in the number of 11-year-old children susceptible to measles, a finding demonstrated by an unchanging percentage of children with measles antibody from 1974-1981.

Adolescent↗

Challenges for improving surveillance for pesticide poisoning: policy implications for developing countries.

BACKGROUND: Surveillance is a critical public health tool for the control of pesticide poisoning. However, surveillance activities in developing countries are bedevilled by multiple problems, and inferences made from review of flawed data may lead to mistaken policy decisions. METHODS: Results of intensified surveillance from an intervention project in the Western Cape Province of South Africa were compared to the pattern of poisonings reported in routine notifications to the health authorities for a control farming district and in the study district over a 5-year period preceding the study. Intensified surveillance data results were also contrasted with policy approaches based on routine notifications and on Regional Poison Centre reports. RESULTS: Poisoning rates reported in the study area increased almost 10-fold during the intervention period. Compared to intensified surveillance, hospital and health authority sources greatly underestimate the proportion of cases due to occupational poisoning, and overestimate suicide as a proportional cause. In addition, the risks for women appear underestimated from routine notifications. Assumptions that a lack of awareness is responsible for most poisonings are not borne out by the empirical data when reporting is intensified. CONCLUSIONS: Current policy assumptions are faulty, may result in inappropriate blame being attributed to victims and, by relying on information as the main element of education, may shift responsibility onto the individual. Improvements in the surveillance system should aim to restructure the types of data collected, and facilitate intra-governmental and inter-sector collaboration. The culture of monitoring based on report writing must change to one of surveillance that leads to intervention.

Adolescent↗

The use of maximum likelihood methods to estimate the risk of tuberculous infection and disease in a Canadian First Nations population.

BACKGROUND: Tuberculosis (TB) notification rates among First Nations people in British Columbia, Canada, are higher than those among non-First Nations people, although rates are declining more rapidly in the First Nations population. The epidemiology of tuberculous infection and disease during the period 1926-2000 in this population was investigated. METHODS: The trend in the annual risk of infection (ARI) since 1926 was estimated using tuberculous meningitis mortality statistics and skin testing data. Risks of progression from infection to disease were estimated by fitting model predictions of disease incidence to TB notifications, using maximum likelihood methods. Infectious TB notifications were matched with ARI estimates to obtain the number of transmissions per infectious case over time. RESULTS: We estimate that the ARI decreased from more than 10% during the prechemotherapy era to less than 0.1% by 2000. The risks of primary, reactivation, and exogenous re-infection disease among adults aged 25-44 years were 22%, 0.1%, and 6%, respectively. The number of transmissions per infectious case decreased from 16 to 2 from the early 1970s to the late 1990s. CONCLUSIONS: This study shows that the risk of infection among British Columbia First Nations people is decreasing, while the relative contribution of reactivation to disease incidence is increasing. Once infected, First Nations people may have a higher risk of developing disease than other populations.

Adolescent↗

Spatial and temporal analysis of Ross River virus disease patterns at Maroochy Shire, Australia: association between human morbidity and mosquito (Diptera: Culicidae) abundance.

Notifications of Ross River (RR) virus disease in Maroochy Shire were mapped according to the patient's place of residence, and standardized morbidity ratios were calculated for each of 11 census districts, with 4 areas having higher than average overall rates of RR virus disease notification. Temporal analysis of RR virus disease notifications from each of the 11 areas indicated that epidemics of RR virus disease either were widespread, resulting in higher than average numbers of cases from the majority of areas, or limited to only certain areas. Mosquitoes were collected in CO2 light traps, and the numbers analyzed to determine whether there was any association between mosquito abundance and disease incidence. Seasonal light trap indices for the fresh water-breeding Culex annulirostris Skuse and brackish water-breeding Aedes funereus (Theobald) were correlated positively with disease incidence. There was no apparent association between Aedes vigilax (Skuse) or Aedes procax (Skuse) light trap indices and disease incidence. Identification of human subpopulations with higher than average rates of RR virus disease, and the mosquito vectors associated with virus transmission, should provide a framework for the development of focused and therefore more effective control programs.

Aedes↗

Evidence of marked sexual behavior change associated with low HIV-1 seroconversion in 149 married couples with discordant HIV-1 serostatus: experience at an HIV counselling center in Zaire.

To determine the effect of an HIV-1 counselling program on 149 married Zairian couples with discordant HIV-1 serology, the rates of HIV-1 seroconversion and reported condom utilization have been observed during 382.4 person-years of follow-up (minimum follow-up time per couple of 6 months). Before determination of HIV-1 serostatus and counselling, less than 5% of these couples had ever used a condom. One month after notification of HIV-1 serostatus and counselling, 70.7% of couples reported using condoms during all episodes of sexual intercourse. At 18 months follow-up, 77.4% of the 140 couples still being followed reported continued use of condoms during all episodes of sexual intercourse. At the time of notification of HIV-1 serostatus, 18 couples experienced acute psychological distress. Home-based counselling by trained nurses resolved these difficulties in all but three couples who subsequently divorced. Intensive counselling following notification of HIV-1 serostatus led to low rates of HIV-1 seroconversion (3.1% per 100 person-years of observation) in Zairian married couples with discordant HIV-1 serostatus who voluntarily attended an HIV counselling center.

Adult↗

Long-term changes in psychological symptomatology associated with HIV serostatus among male injecting drug users.

OBJECTIVE: To examine long-term changes in psychological symptomatology from 6 to 24 months after notification of HIV serostatus among male injecting drug users (IDU). DESIGN: Self-report and interview data were collected at 6-month intervals as part of a longitudinal study monitoring HIV infection and risk-associated behaviors among IDU. SETTING: A community-based methadone-maintenance clinic. PARTICIPANTS: Ninety-seven male IDU (81 HIV-seronegative, 16 HIV-seropositive), including both methadone-maintained and out-of-treatment IDU. MAIN OUTCOME MEASURES: Analyses of long-term changes in psychological symptomatology associated with HIV serostatus among male IDU. RESULTS: Analyses of long-term changes in psychological symptomatology between groups revealed no significantly greater levels of overall psychological distress or significant elevations on subscales of the Symptom Checklist-90 for HIV-seropositive compared with HIV-seronegative male IDU. Also, no significantly higher scores on the Beck Depression Inventory or the psychiatric composite score of the Addiction Severity Index were observed between groups. CONCLUSIONS: Our results suggest that HIV-seropositive male IDU do not express greater levels of psychological symptomatology from 6 to 24 months following notification of seropositivity compared with HIV-seronegative male IDU. Several explanations for these findings are considered. Future work should examine why male IDU do not report significant and long-term elevations in symptoms post-notification of HIV seropositivity. Also, studies of changes in psychological symptomatology as a function of HIV serostatus among female IDU need to be conducted to assess implications for treatment interventions among this underserved population.

Adult↗

Intention to notify sexual partners about potential HIV exposure among New York city STD clinics' clients.

BACKGROUND: Partner notification legislation has recently been implemented in New York State. GOAL: The goal of the study was to assess willingness of individuals seeking HIV testing to (1) give counselors contact information about partners, if infected, and (2) contact partners on their own. STUDY DESIGN: Before implementation of the legislation, 1372 individuals seeking HIV testing at New York City Department of Health STD clinics completed a brief, anonymous survey. RESULTS: More than 90% of heterosexually active individuals and more than 80% of men who have sex with men (MSM) could contact sex partners with whom they had had unprotected vaginal/anal sex. Were they to test HIV-positive, almost all respondents would have been willing to notify sex partners personally; 90% of heterosexually active individuals and 80% of MSM also expressed willingness to provide contact information to providers. Respondents preferred to be notified by a sex partner rather than by a provider. Patient-referred clients reported being more comfortable with the referral than provider-referred clients. CONCLUSIONS: Voluntary partner notification performed by the index case-with notification by the provider should the former fail to occur-is recommended.

Adolescent↗

Genotyping of Chlamydia trachomatis would improve contact tracing.

BACKGROUND: The reported number of Chlamydia trachomatis genital infections has increased 15% annually since 1997 in Sweden. Inaccurate partner notification might be one reason. GOAL: The goals were to determine if genotyping of C trachomatis would improve partner notification and to study the duration of infection. STUDY DESIGN: Sexual networks were constructed. C trachomatis isolates from 231 individuals attending the Orebro STD clinic during 1 year were typed by sequencing of the omp1 gene. RESULTS: All individuals were traced and diagnoses were established in 30 of 161 networks. More than one genotype was seen in seven networks. The mean duration of C trachomatis infection in each network was calculated to be 23 weeks. CONCLUSION: Genotyping could be a useful tool in partner notification when there are discrepant or uncommon genotypes. Limited clinic catchment areas create information difficulties that obstruct accurate contact tracing.

Adolescent↗

Time to treatment for women with chlamydial or gonococcal infections: a comparative evaluation of sexually transmitted disease clinics in 3 US cities.

BACKGROUND: Many women with positive screening tests for chlamydia or gonorrhea are not promptly treated and are at risk for complications and further disease transmission. Improved methods for notifying infected patients might increase timely treatment in this population. GOAL: Describe notification procedures at STD clinics in Washington, DC; Los Angeles; and San Diego and compare timeliness of treatment during 2000 to 2002. STUDY: Interviews were conducted to determine methods for notifying infected patients. Data were abstracted from 327 medical records of women with chlamydia or gonorrhea who had not been treated presumptively. The interval between specimen collection and treatment ("time to treatment") was calculated. RESULTS: Each clinic had different procedures for notifying untreated infected women. Among those treated, the median time to treatment was 18 days in Washington, DC, and 8 days in Los Angeles. In San Diego, the median time to treatment was initially 14 days, which improved to 7 days after patient-notification procedures were changed. CONCLUSION: Simple changes in patient notification procedures can decrease time to treatment at STD clinics. STD programs should evaluate time to treatment and institute methods for efficient patient follow-up.

Adult↗