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PubMed2004

Quality of life and trial adherence among participants in the prostate, lung, colorectal, and ovarian cancer screening trial.

BACKGROUND: The National Cancer Institute's Prostate, Lung, Colorectal, and Ovarian (PLCO) Cancer Screening Trial was designed to examine whether annual screening tests for these four tumor sites result in reduced disease-related mortality. We assessed the impact of trial participation on both health-related quality of life (HRQL) and trial adherence. METHODS: Participants (N = 432; 217 in the control arm and 215 in screening arm) were accrued from the Georgetown University PLCO site from May through December 1998. Screening-arm participants were interviewed by telephone at baseline (prescreening), shortly after notification of screening results (short-term follow-up), and 9 months after notification of screening results (intermediate-term follow up). Control-arm participants completed a baseline and 1-year follow-up assessment. Logistic regression analyses were conducted. RESULTS: Participants reported high levels of HRQL and satisfaction with their decision to participate. Screening-arm participants with abnormal screening results had a higher level of intrusive thoughts about cancer than those with all normal results (odds ratio [OR] = 2.9, 95% confidence interval [CI] = 1.3 to 6.3) at the short-term follow-up but not at the intermediate-term follow-up (when abnormal test results were known to be false positive; OR = 1.9, 95% CI = 0.89 to 4.2). Trial adherence was statistically significantly better among participants who had received all normal results in the previous year's screening tests (93.7% versus 78.7%; OR = 3.7, CI = 1.1 to 12.0) than in those who received at least one abnormal result. In the control arm, adherence (defined as returning annual questionnaires) was positively associated with education (OR = 3.4, 95% CI = 1.4 to 8.4) and sex, with women being more likely to return questionnaires than men (OR = 2.1, 95% CI = 1.05 to 4.4). CONCLUSIONS: It is feasible to collect HRQL measures as part of a large cancer screening trial. Prior abnormal screening results were related to short-term HRQL but not to intermediate-term HRQL. Trial adherence was poorer among those who had received previous false-positive results. These results suggest several methods for improving adherence in this and other subgroups.

Adult↗
PubMed1991

Increase of vaccination coverage by mass media and individual approach: intensified measles, mumps, and rubella prevention program in Finland.

In the 1970s, mass vaccination projects were started in various parts of the world against measles and congenital rubella, with eradication as the final goal. In many developing and industrial countries, including Finland, the elimination of measles failed because of low vaccination coverage. In Finland, a combined measles, mumps, and rubella (Virivac) vaccination program was started in 1982. Computerized recording of the vaccinated children was considered necessary and was integrated with the population registry to identify the hard-to-reach families. Several interventions improved compliance: a mass media campaign and notification of nonvaccinated children to local health professionals and parents. All successive campaigns increased vaccination coverage significantly, with the notification of parents about their nonvaccinated child being especially effective. A vaccination coverage of over 96% was achieved, which theoretically prevents measles, mumps, and rubella transmission.

Child↗
PubMed2000

A comparison of trends in problematic drug misuse from two reporting systems.

BACKGROUND: Regional Drug Misuse Databases (RDMDs) are considered the main source of intelligence on problem drug takers in England. Originally intended to provide trend data on visible drug use, a recent strategic review concluded that their purpose should be to monitor treatment targets for the Government's latest 10 year strategy to tackle drug misuse. The aim of this analysis was to explore whether the General Practice Research Database (GPRD) could supplement RDMDs. METHODS: A retrospective analysis was carried out using the GPRD and the RDMD in the West Midlands from 1993 to 1997. RESULTS: Extrapolation of GPRD data indicates 6,574 drug misusing or dependent diagnosed patients in primary care in 1997 compared with 3,643 clients reported by all agencies including general practitioners (GPs) to the RDMD. From 1993 to 1997, the RDMD notification rate fluctuated whereas the GPRD rate has increased steadily since 1995. Half of all drug misusing or dependent patients recorded on the GPRD had psychiatric co-morbidity and 10 per cent had been referred to hospital for a drug overdose. CONCLUSIONS: As the GPRD has been unaffected by the demise of statutory notification of drug dependence in 1997, interpretation of trends may be more reliable than on the RDMD. There is also considerable potential for analysis of prescribing patterns, co-morbidity and drug-related hospitalization. As the Department of Health's Strategic Review of RDMDs recommends GPs as 'core reporters' for providing data to the national system, there is a need for a strategy to ensure valid and comprehensive reporting from GPs.

Data Collection↗
PubMed2002

Determining the predictors of internal medicine residency accreditation: what they do (not what they say).

PURPOSE: The Accreditation Council for Graduate Medical Education and the Residency Review Committee for Internal Medicine (RRC-IM) evaluate internal medicine residency programs using a list of 301 program requirements. The authors investigated which requirements, program demographics, and site-visitor characteristics were the strongest predictors of accreditation. METHOD: The authors surveyed the program directors of all 405 accredited internal medicine residency programs in February 1998, obtaining data on the duration of the accreditation process, site visitors, and number and quality of citations. They also requested a copy of the notification letter containing citations and length of time until the next accreditation site visit (cycle length). RESULTS: A total of 217 responses (54%) was received. The mean cycle length was 3.0 years, and the accreditation process averaged 14.5 months. Smaller programs had a shorter average cycle length. Site visitors were reported to be prepared and professional overall. However, site visitors with the lowest evaluations by program directors were associated with shorter cycle lengths. Four program characteristics and program citations accounted for 60% of the variation in cycle length: total number of citations in the notification letter, percentage of graduates passing the American Board of Internal Medicine Certifying Examination, inadequate demonstration of resident scholarship, and inadequate ambulatory care experience. CONCLUSION: The authors devised an independent mechanism for determining the duration of the RRC-IM review process, influence of program demographics on the process, influence of site visitors on the accreditation action, and program requirements having the greatest effect on cycle length.

Accreditation↗
PubMed1994

Death from suicide and overdose among drug injectors after disclosure of first HIV test result.

OBJECTIVE: To investigate whether notifying injecting drug users (IDU) of their positive HIV serostatus contributes to suicide and overdose mortality risk. DESIGN: Members of a cohort of IDU, recruited since December 1985, who first learned their HIV serostatus after study entry but before December 1992, were studied for incidence of deaths due to suicide and overdose. METHODS: Incidence of mortality due to suicide/overdose was calculated from date of first HIV test result disclosure until the end of follow-up or diagnosis of AIDS. RESULTS: Eighty-six HIV-positive and 252 HIV-negative IDU were included with median follow-up times of 4.3 and 4.0 years, respectively. Seven suicides and 10 deaths from overdose were recorded. High suicide/overdose risk shortly after test result notification was not found among HIV-positive IDU. Only one out of eight HIV-positive IDU who died of suicide/overdose died within 6 months of first disclosure. The overall suicide/overdose mortality rate was higher for HIV-positive than HIV-negative IDU; the rate ratio being 2.46 [95% confidence interval (CI), 0.95-6.39] or 2.04 (95% CI, 0.77-5.39) after control for confounders. CONCLUSIONS: Notifying IDU of their positive HIV serostatus does not appear to lead to a sudden and substantial rise in suicide/overdose deaths. Although death from suicide/overdose is more common among HIV-positive than HIV-negative IDU, this difference is likely to result from factors other than test result disclosure. Therefore, provided that appropriate counselling is offered, we see no reason to discourage voluntary HIV test result notification for fear of inducing suicide in HIV-infected IDU.

AIDS Serodiagnosis↗
PubMed1998

Improving quality of sexually transmitted disease case management in rural South Africa.

OBJECTIVE: To measure quality of sexually transmitted disease (STD) syndromic case management and aspects of health-seeking behaviour at baseline in an intervention trial. SETTING: Ten rural primary care clinics, Hlabisa district, South Africa. DESIGN: Simulated patients (fieldworkers trained to present with STD syndromes) made a total of 44 clinic visits; 49 STD patients were interviewed when exiting clinics; facilities were assessed for availability of necessary equipment and drugs; 10 focus group discussions were held with staff; and STD syndrome surveillance was performed in all 10 clinics. RESULTS: A total of 9% of simulated patients were correctly managed (given correct drugs, plus condoms and partner notification cards), recommended drug treatment was given in only 41% of visits, and appropriate counselling was given in 48% of visits. Among patients leaving the clinic, although 39% waited over an hour to be seen and only 37% were consulted in private, all reported staff attitudes as satisfactory or good. Only six clinics had syndromic management protocols available, three reported intermittent drug shortages, and seven lacked partner notification cards. Focus group discussions revealed good staff knowledge about STD, but showed lack of training in syndromic management and low morale. Surveillance data showed that while 75% of those presenting for care did so within 1 week of symptom onset, 27% had been treated for an STD in the preceding 3 months, and only 6% of those treated were contacts. CONCLUSIONS: Quality of STD case management was poor despite good staff knowledge and availability of most essential resources. An intervention comprising staff training and STD syndrome packets has been designed to improve quality of case management.

Case Management↗
PubMed1999

AIDS-related cancers in Africa: maturation of the epidemic in Uganda.

BACKGROUND: The AIDS epidemic has passed its peak in Uganda, with possible consequences for the risk of cancers related to infectious agents. OBJECTIVE: To compare the incidence of cancers possibly linked to infections with HIV, before the AIDS epidemic (the 1960s), at its high point (the early 1990s) when HIV-seroprevalence and AIDS notifications peaked, and after the onset of its decline in the later 1990s. METHODS: Analysis of incidence rates of infection-associated cancers in the population of Kyadondo county, in 1960-1971, 1991-1994, and 1995-1997. Comparison with data on prevalence of HIV infection, and notifications of AIDS. RESULTS: The incidence of Kaposi's sarcoma has increased enormously since the 1960s, with a shift to earlier age at onset, and more generalized and nodal disease; there has been little change in the profile during the 1990s. There was a large increase in incidence of squamous cell carcinomas of the conjunctiva, which has continued through the 1990s. Non-Hodgkin's lymphomas showed little increase in incidence until the most recent period, in which the incidence has increased both in children (particularly Burkitt's lymphomas) and adults. Although the incidence of cervical cancer was higher in the 1990s than the 1960s, it seems doubtful that this is related to HIV infection. Certain other cancers which have been linked to AIDS in western populations (Hodgkin's disease, anal carcinoma, childhood leiomyosarcoma) show no changes in risk. CONCLUSION: The AIDS epidemic has dramatically changed the profile of cancer in Uganda. Trends in the AIDS-related cancers are consistent with current knowledge concerning the mechanisms behind the increased risk. The incidence of certain cancers with a viral aetiology (liver, cervix, penis, Hodgkin's disease) appears not to have been influenced by AIDS.

Acquired Immunodeficiency Syndrome↗
PubMed1996

Assessment of personnel protective equipment use at two Department of Energy facilities.

Research facilities under the jurisdiction of the United States Department of Energy are required to formally report significant radioactive contamination incidents to the Department of Energy under Department of Energy Order 5000.3. Through the reporting process, the Department of Energy is given a detailed incident description through a notification report, periodically apprised of subsequent facility response through update reports, and informed of the corrective actions that the facility will implement to prevent incident recurrence through a final report. For tracking and trending purposes, the notification, update, and final reports are entered into the Department of Energy Occurrence Reporting and Processing System database. This paper details an analysis that was performed on the radioactive contamination incident reports that were entered into the Department of Energy Occurrence Reporting and Processing System database by two similar research facilities at Los Alamos National Laboratory. The analysis focused on personnel protective equipment requirements at the two facilities to determine whether personal skin and clothing contamination incidents could be better avoided.

Health Physics↗
PubMed1995

Adequacy of follow-up in children diagnosed with urinary tract infections in a pediatric emergency department.

A retrospective chart review was undertaken to determine primary care provider (PCP) notification of patient visits and appropriateness of follow-up in children discharged from an inner city, university-affiliated children's emergency department with the diagnosis of urinary tract infection (UTI). Seventy-five charts met criteria for review, and phone calls were made to the PCP/families to obtain follow-up information. Statistical analysis was performed using the chi2 analysis and Fisher's exact test. The PCP was notified of the patient's diagnosis at the time of the ED visit in 24 cases (32%) and was aware of the ED visit/diagnosis of UTI in a total of 53 (71%). Children were more likely to have a repeat urine culture in follow-up if the PCP was aware of the diagnosis (60%) than if the PCP was not aware (9%) chi2 = 14.496 P < 0.001. Forty-seven children met criteria commonly accepted for radiographic evaluation. Nineteen children, whose PCPs were aware of their diagnosis, met criteria and had studies performed. Children were more likely to receive appropriate radiographic evaluation if their PCPs were aware of their diagnoses of UTI 19/35 (54%) than if their PCPs were unaware of their diagnoses 0/12 (0%). Fisher's exact two-tailed t test P < 0.001. We conclude that failure of PCP notification can impact negatively on appropriate patient follow-up and that, in many cases, PCPs are not following current recommendations in the management of children with UTIs.

Adolescent↗
PubMed1998

Using social network and ethnographic tools to evaluate syphilis transmission.

BACKGROUND AND OBJECTIVES: Partner notification has been the cornerstone for the prevention and control of syphilis in the United States. This technique may not make full use of contextual data that an ethnographic and social network approach can offer. GOALS OF THE STUDY: The occasion of a syphilis outbreak among young people was used to investigate the applicability of a social network approach and to test the validity of several traditional approaches to syphilis epidemiology. STUDY DESIGN: An outbreak of syphilis was investigated by interviewing both infected and noninfected people, by directing resources based on network association, by creating and evaluating network diagrams as an aid to the epidemiologic process, and by including ethnographic observations as part of outbreak management. RESULTS: Diagrammatic display of network growth provided a useful alternative to the traditional epidemic curve. Case prevention was demonstrated by identifying uninfected people with multiple concurrent exposures. Concurrent, overlapping exposure in infected people rendered traditional "source" and "spread" criteria moot. CONCLUSIONS: The current discussions of partner notification may be informed by recognizing that it is a subset of a broader and potentially more powerful approach. This approach calls some basic tenets of syphilis epidemiology into question.

Adolescent↗
PubMed2001

Evaluation of interviewing techniques to enhance recall of sexual and drug injection partners.

BACKGROUND: People with multiple sex partners forget a significant proportion of their partners, and drug injectors forget a large proportion of the persons with whom they inject drugs. This incomplete reporting poses a problem for partner notification and social network research on infectious disease. GOAL: To evaluate supplementary interviewing techniques to enhance recall of sex and injection partners. STUDY DESIGN: One hundred thirty-nine persons at high risk for HIV participated in a randomized trial of interviewing techniques. After participants freely recalled their partners, interviewers administered one of five techniques to elicit partners who might have been forgotten. Four experimental techniques involved cues (locations, role relationships, personal timeline, and partners recalled prior to cues) developed from memory research. Alphabetic cues served as a control technique. To assess the cumulative effects of the techniques, all five techniques were administered to another 19 participants. RESULTS: In the randomized trial, the techniques varied moderately in effectiveness and time efficiency. When administered as a set, the five techniques increased the number of sex and injection partners elicited by 40% and 123%, respectively, on average. The techniques were most effective with individuals who recalled many partners before the cues and/or sensed they might be forgetting partners. The available evidence indicates cue-elicited partners are as valid as partners recalled before the cues. On epidemiologically significant variables, cue-elicited partners also are similar to partners recalled before the cues. CONCLUSION: The supplementary techniques counteract forgetting appreciably and may promote more effective partner notification and more complete description of risk networks.

Adult↗
PubMed1989

Interpretation and communication of the results of medical field investigations.

Since the controversy over cytogenetic test results at the Love Canal in New York State, there has been increasing concern about the communication of medical test results to participants in field studies. To identify the range of issues that arise and to present examples of practices that might be useful for consideration, we have drawn from 15 years of experience in interpreting and communicating the results of medical field investigations by the National Institute for Occupational Safety and Health. The investigations were qualitatively characterized according to study type and design, substances involved, language used in the notification of results, and the nature of the efforts to put results in perspective. Based on this evaluation, the following recommendations are made: (1) provide a comprehensible consent form, (2) interpret results for study participants, (3) use clear language, (4) be explicit about uncertainty of findings, (5) where appropriate, indicate the need for medical follow-up, (6) provide results promptly, (7) provide overall study results, (8) evaluate the impact of the notification, (9) train investigators in the practice of communicating results.

Environmental Exposure↗
PubMedDate not supplied

Prospective assessment in newborns of diabetes autoimmunity (PANDA): maternal understanding of infant diabetes risk.

PURPOSE: To assess accuracy of mothers' understanding of their newborns' genetic risk for type 1 diabetes and to identify predictors of the comprehension and retention of genetic information. METHODS: Mothers of 435 newborns genetically screened at birth were informed of the infant's risk for type 1 diabetes using a standard script that provided both categorical and numerical risk information. The mothers' comprehension and retention of this information were assessed by structured interview on two occasions, approximately 3.6 weeks and approximately 3.9 months postnotification. RESULTS: At the initial interview, 73.1% of mothers gave a correct estimate of their child's genetic risk, 3.2% overestimated risk, 13.3% underestimated risk, and 10.3% could not recall risk at all. At the follow-up interview, fewer mothers (61.9%) correctly estimated their child's risk and more mothers (24.4%) underestimated their child's risk. Maternal accuracy was associated with maternal education, ethnic minority status, infant risk status, maternal ability to spontaneously recall both categorical and numerical risk estimates, and length of time since risk notification. Underestimation of risk was associated with maternal education, family history of diabetes, time since risk notification, and maternal anxiety about the baby's risk. CONCLUSION: The accuracy of mothers' recall of infant risk declines over time, with an increasing number of mothers underestimating the infant's risk. Effective risk communication strategies need to be developed and incorporated into genetic screening programs.

Comprehension↗
PubMedDate not supplied

Nursing documentation of telephone communication with physicians in community nursing homes.

OBJECTIVE: The objective of this study was to describe the nursing documentation of telephone communication with physicians in community nursing homes. DESIGN: We conducted a prospective observational study evaluating nursing documentation of all telephone calls to one physician group. SETTING: We studied two proprietary community nursing homes in Baltimore, Maryland. MEASUREMENTS: Data were collected by physicians at the time of each call regarding the time, day, nursing facility, reason for the call, and any orders given. Calls were also categorized as to whether documentation was necessary by defined criteria. The nursing home charts were then reviewed for the presence of documentation of 1) the issue that prompted the call, 2) physician's participation in the matter, and 3) any orders given by the physician. The relationships between the characteristics of the telephone calls and the rates of documentation were then analyzed. RESULTS: There were 248 calls from the two nursing homes during the 2-month study period. Nursing documentation of the issue that prompted the call was present for 80% of total calls. This documentation was more likely to be present with calls for change of patient status and notification of laboratory/radiograph results compared with calls for other issues (117 of 125 [94%] vs. 57 of 63 [90%] vs. 24 of 60 [40%], respectively; chi(2) = 78.3, P <0.0001). Calls that were categorized as "documentation necessary" by the Medical Director were more likely to be documented than calls that were not (132 of 150 [88%] vs. 9 of 35 [26%], respectively; chi(2) = 60.8, P <0.001). Of the 198 calls with any form of documentation, specific mention of physician participation in the communication was present in 89% of these calls. This documentation of physician participation was more likely to be present with calls for laboratory/radiograph notification than with calls for change of patient status or calls for other reasons (57 of 57 [100%] vs. 99 of 117 [85%] vs. 20 of 24 [83%], respectively; chi(2) = 10.0, P = 0.007). Physicians indicated that orders were given during 69% of calls, but orders were only documented for 79% of these interactions. No characteristics of the call were associated with likelihood of order documentation. CONCLUSIONS: In this study, documentation of issues that lead to telephone calls to physicians was not always present. Similarly, orders given by the physician were absent over 20% of the time. Nurses, physicians, and facilities should develop efficient and routine strategies to optimize rates of documentation of telephone communication with physicians.

Aged↗
PubMed2004

Effectiveness of self-referral for male patients with urethral discharge attending a sexually transmitted disease clinic in China.

BACKGROUND: Although partner notification (PN) has long been considered as an important component in sexually transmitted disease (STD) control programs and has been implemented in both developed and developing world, little information is known about the acceptability and efficacy of the strategy in China. GOAL: The goal of this study was to assess the acceptability and outcome of self-referral for male patients with urethral discharge and to identify the characteristics associated with successful outcome based on a specialized STD clinic. METHODS: From November 2001 to November 2002, 730 patients with confirmed urethral discharge were selected and asked by STD clinicians to bring their sexual contacts to treatment in a specialized STD clinic. The demographic and sexual characteristics of returned and unreturned index patients were analyzed. Univariate and multivariate analyses were applied to identify the characteristics associated with the outcome of self-referral. RESULTS: Of 723 eligible index patients, 294 (40.7%) who returned for follow up identified 534 sexual partners and 429 (59.3%) who did not return for follow up identified 759 sexual partners. Of the total named 1293 sexual partners, 301 (23.3%) were notified by index male patients and 265 (20.5%) presented at the clinic. Of the 265 partners tested, 165 (62.3%) were infected with gonorrhea, chlamydia, or both; of them, 78 (47.3%) were asymptomatic. When the partnerships were married and steady, the informed rate was higher than that when the partnership was casual. For commercial sexual partnerships, only 1.8% of the partners were informed. In multivariate analysis, a prior STD history and condom use during the last sexual contact were associated with successful outcome of notification. CONCLUSION: Patient referral was accepted both by STD clinic attendees and STD clinicians. The results of the study show that use of self-referral for partners of men with urethral discharge in a Chinese STD clinic was, with minimal effort, moderately successful. Further efforts to improve case-finding outcomes are warranted.

Adolescent↗
PubMed1990

The development of a model for predicting infants at high risk of sudden infant death syndrome in Tasmania.

A statutory 'Notification of Birth' form, containing obstetric and perinatal information, has been routinely collected for Tasmanian deliveries since 1974. For the period 1980 to 1984, birth notification data was collected for over 99% of Tasmanian deliveries. This data was examined for the 130 cases of sudden infant death syndrome (SIDS) that occurred from 1980 to 1984 and for 610 controls. It was then used to construct an at-birth scoring system to predict infants at higher risk of SIDS in the postneonatal period. A predictive model of the relative risk of SIDS was developed by fitting a binomial/logistic generalised linear model to the binary 1980-1984 case control data with birth variables used as predictors. The final predictive model contained five variables (maternal age, infant sex, birth weight, month of birth and feeding practice) and had a sensitivity of 62% and specificity of 73%. The model was then tested on independent birth cohorts from 1985 and 1986 and found to have a sensitivity of 47% and specificity of 77%. The risk of SIDS in the group of infants classified as high risk was 7.9 per 1000 live births and in the group at low risk it was 2.5 per 1000 live births. In addition, the model predicted 74% of neonatal deaths occurring during these 2 years. This compares well with other predictive models developed elsewhere. The predictive model will be used to identify infants at high risk for SIDS in a prospective cohort study.

Cohort Studies↗
PubMed2006

Finding patients eligible for antiretroviral therapy using TB services as entry point for HIV treatment.

OBJECTIVE: To estimate the proportion of antiretroviral therapy (ART) eligible adults (15-49 years) with tuberculosis potentially identifiable through tuberculosis services using a CD4 count below 350 cells/mm3 as cut-off value for ART initiation. METHODS: Using TB notification rate data, HIV seroprevalence data, and estimates of the size of the adult population (15-49 years) in 18 sub-Saharan African countries with an HIV seroprevalence of > 5%, calculations of the number of ART eligible adults with tuberculosis presenting to tuberculosis services were made. Assumptions were made on the tuberculosis notification rates in the age-group 15-49 years, the HIV-infected population with a CD4 count below 350 cells/mm3 and the relative risk of developing tuberculosis, and average duration from HIV infection to death. The probability of having a CD4+ count below 350 cells/mm3 given a diagnosis of tuberculosis was estimated using Bayes' theorem, and estimates of the number of patients with a CD4 count below 350 cells/mm3 identifiable through tuberculosis were made. The number needed to screen to identify one ART eligible patient through tuberculosis services was estimated for each country. RESULTS: ART eligible adults with tuberculosis potentially identifiable through tuberculosis services in the 18 countries ranged from 2% to 18% of the total HIV-infected adult population with a CD4+ count below 350 cells/mm3 and would average 10% of all such HIV patients. The number needed to screen to identify ART eligible patients through tuberculosis services ranged from 1.4 to 4.2, against 8.6 to 65.4 if adults aged 15-49 are randomly screened for low CD4 counts. CONCLUSION: Tuberculosis services are an important entry point for identifying ART eligible patients. Given that dually infected patients identified through tuberculosis services contributed to 10% of the HIV-infected adult population with a CD4 cell count below 350 cells/mm3 in the 18 sub-Saharan African countries, major efforts are required beyond the tuberculosis services in detecting patients that should benefit from ART. However, the low number needed to screen gives opportunity to use tuberculosis services in AIDS control and ART scaling-up programmes.

Adolescent↗
PubMed1994

Rare disease surveillance.

Rare diseases in children account for disproportionate morbidity and mortality and are particularly demanding of both families and health resources. Surveillance may provide data on their epidemiology, aetiology, management and outcome and on the support requirements of affected children. Existing methods for rare disease surveillance include mandatory and voluntary notification schemes, which may be active or passive, hospital discharge databases and death certification data. The recent establishment of the Australian Paediatric Surveillance Unit has facilitated active, prospective, national case ascertainment by voluntary notification of selected rare conditions. Information obtained should enable estimation of incidence rates, evaluation of prevention and management strategies, extend data collected by existing methods and help estimate future health needs.

Australia↗