Hemolytic Uremic Syndrome: Australian Notification and Surveillance

This essay delves into the notification and surveillance of Hemolytic Uremic Syndrome (HUS) in Australia, a notifiable infectious disease under the Public Health Act 1997. The essay provides an overview of the Australian public health surveillance system, emphasizing its continuous, systematic approach to data collection, analysis, and dissemination to reduce morbidity and mortality. It details the processes and methods of the surveillance system, including the role of the National Notifiable Diseases Surveillance System (NNDSS) and the exchange of information through various channels. The essay further examines the components and attributes of an effective surveillance system, highlighting its simplicity, flexibility, data quality, and timeliness. It then focuses on HUS in Australia, discussing the characteristics of the disease, the surveillance statistics, and the merits of public health surveillance on HUS. The essay also evaluates the Australian Paediatric Surveillance Unit (APSU), while acknowledging the limitations of the current system, such as the need for more data validation and the challenges in detecting non-O157 STEC infections. The essay underscores the importance of authentic surveillance data for preventing HUS infections and the ongoing need for improvements in the national HUS surveillance system.

Running Head: NOTIFICATION AND SURVEILLANCE
Notification and Surveillance
Name of University
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Notification and Surveillance
Hemolytic uraemic syndrome (HUS) is a rare but serious disease,
distinguished by acute renal damage in young children and grownups (1). Mostly,
this clinical syndrome, being a systemic thrombotic microangiopathy can affect the
life expectancy of the patients, due to the diverse etiologies (2). In Australia, HUS is
a notifiable infectious disease, as per the Public Health Act 1997 (3), making it
obligatory for the health professionals to comply with the prevailing enforceable Code
of Practice 2006 (4). This essay is an attempt to investigate why the HUS is
notifiable, and how this is achieved through the Australian surveillance system.
An overview of the Australian Public health surveillance system
The Australian public health surveillance is a continuous, systematic
compilation and analysis, as well as interpretation and dissemination of crucial data,
relating to a specific health oriented event for reducing its morbidity and mortality. It
is presumed that the availability of such data will enhance the health of the
Australians through public health initiatives and program planning, as well as their
assessment. It can steer a sudden action for incidents that have public health
importance, and measure the amount of disease burden and health concerns. The
surveillance data could be used for monitoring disease status, program evaluation,
public policy development, and many more, while perceiving systemic changes in
implementing health practices. They will also become helpful in prioritizing the
health resource allocation and the epidemiologic research-promotion (5).
Process and methods of the surveillance system
Australia is a federation of six states and two territories, namely, Queensland,
New South Wales, Tasmania, South Australia, Victoria, Western Australia, the
Australian Capital and the Northern province. The State and the territorial health

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departments collect notifications of communicable diseases, according to their
corresponding public health legislations. The National Health Security Act 2007
provides them the authority for exchanging health information between them and the
Government. It is under the purview of this Act that the National Notifiable Diseases
List has been established, to look after the operational arrangements, such as the
formation and development of the existing surveillance and reporting systems. In
2014, in lieu of this Agreement, the states and territories renewed notification data,
relating to 65 communicable diseases for listing under the national communicable
disease surveillance (3).
In the Australian surveillance system, the legislators and the public health
officials are entitled to implement the health surveillance activities throughout the
country, for meeting the public needs. The surveillance systems adopted for these
actions range from the collection of data belonging to a single case, to multiple data
formats and surveys, through the electronic systems. These systems will have the
likelihood of expansion, keeping the patient safety, confidentiality, and the system
security at optimum level (5). The health surveillance is not limited to a biological
monitoring, as it is a prolonged process, consisting of gathering information about an
individual’s occupational history, physical examination and testing for biological
monitoring (6).
Methods
The National Notifiable Diseases Surveillance System (NNDSS) requires (i)
unique record-reference number (ii) name of the notifying state or territory (iii) the
disease-code (iv) status of confirmation, and (v) the date of notification by the
concerned health department. Other types of data needed are: (i) personal details, like
birth date, age, sex, indigenous status, and many more, including disease

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commencement date, specimen collection date, reference number of the outbreak, etc.
The quality of the data and surveillance will be monitored and updated periodically by
the Health Protection and the National Surveillance Committee (NSC). All
information about the communicable disease surveillance is exchanged through
different channels, like the tele-conferences of the Communicable Diseases Network
Australia (CDNA). In addition, the journal of Communicable Diseases Intelligence
(CDI) publishes current surveillance data, annual reports, and articles about the
communicable diseases in Australia (3).
Components and attributes of an effective Surveillance system
The surveillance system components:
The Australian system of public health surveillance focuses on the
communicable diseases and other health conditions, such as injuries, environmental
hazards, occupational health and safety, birth defects, drug addictions, severe
diseases, mental health, and other health behaviors. The players in the system are
public health agencies, voluntary health care organizations, and hospitals, and also the
non-government organizations. All surveillance systems collect, review, and
evaluate, as well as transform the data collected for public health accomplishment
(15).
The public health system attributes:
A public health surveillance scheme monitors the acute health-related events,
by identifying and reducing the risks due to them. It is constructive, if it helps in
alleviating the problems associated with the health-related event, from its first
insignificant condition to its ongoing significance. The surveillance system data
supply several performance measures for the needs assessments and system
accountability. Therefore, a representative surveillance system needs to be identified

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as uncomplicated, flexible, tolerable, and steady, for promoting a public health action.
Such a surveillance system has the following attributes:
(i) Simplicity- provides the structure and ease of operation in meeting the
objectives.
(ii) Flexibility- displays adaptive nature to changing information
requirements with minimal time, personnel, and funds. It is viable for
new health events and any other system variation.
(iii) Data quality- reflects the reliability and the fullness of the system data.
(iv) Acceptability ensures the participation of persons and institutions in the
surveillance through their consents
(v) Sensitivity- denotes the level of the reported health related event and the
system’s capability to detect the outbreaks.
(vi) Predictive Value Positive- provides the reported proportion of the cases placed
under surveillance.
(vii) Representativeness- describes the rate of recurrence of a health related event
and its distribution, according to population, place, and individual.
(x) Timeliness suggest the speed in fulfilling the procedural steps in the
surveillance system.
(xi) Stability- assures the reliability and availability of the system for surveillance
(5).
Australian surveillance system and HUS
Australian cases of Haemolytic uraemic syndrome are characterized by severe
renal impairment, associated with STEC infection. In 2014, there were 20 notified
cases of HUS, whereas in 2013, the number of HUS cases reported was only 15. Out
of this, about 55% of notifications belonged to the states of New South Wales and

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Victoria. It was found that in 2014, 45% of the 0–4 years age group has been the
most frequently notified, while half of the cases were in males (3).
Summary Protocol
The HUS is a microangiopathic haemolytic anaemia, with fragmented red
blood cells, leading to thrombocytopenia and severe renal impairment. Out of the two
separate clinical sub-groups, the first group shows a prodrome of diarrhea in the
summer, whereas the second group lacks diarrheal prodrome, without any seasonal
variation. The patients of the latter group may have a family history of HUS, caused
by infection, like Streptococcus pneumonia, which can become worse. The studies
conducted by the Australian Paediatric Surveillance Unit (APSU) prove that
O157:H7 is rare in Australia and that the common one is O111:H. There were no
previous national HUS outbreak figures and the incidence of HUS (7).
According to the APSU, there were a minimum of 0.58/100,000 incidences of
children below 15 years and 1.27 incidences of children below 5 years (7).
Considering the etiologic and pathogenic variations in the classifications of hemolytic
uremic syndrome, clinical studies have established that the gene mutation that
encodes the complement-regulatory proteins are responsible for all types of
thrombotic microangiopathy (9). It is also found that the Shiga-toxin-
producing Escherichia coli (STEC) O157:H7 is a newly emerged zoonotic pathogen,
having severe morbidity (10).
In this connection, Vally et al., 2012, reports that “the Shiga toxin-producing
Escherichia coli (STEC) are an important cause of gastroenteritis in Australia and
worldwide and can also result in serious sequelae, such as haemolytic uraemic
syndrome (HUS)” (8). Majowicz et al., 2014 also hold the same view. They argue
that the Shiga toxin–producing Escherichia coli (STEC) are the main reason for the

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foodborne diseases, resulting in the frequent incidences of HUS and end-stage renal
disease (11).
The surveillance statistics overview
On examining the data available from the national and state notifications,
serotypes, mortality, hospitalizations, and the outbreaks, the annual rate of notified
STEC illness found in Australia was 0.4 cases per 100,000 each year for the period
from 2000 to 2010 (8). During this period, out of the total 822 STEC infection cases
notified in Australia, there was only a single notification in the Australian Capital
Territory, while South Australia had 413 notifications, where the surveillance for
STEC infection was intense. The notification rate in the whole Australia was 0.12
cases per 100,000 each year, for STEC O157 infections, in the 9 year period, with 11
outbreaks, due to STEC. The surveillance statistics show that the STEC infections and
HUS cases displayed a seasonal distribution, with most cases occurred between
December and February. When compared to other developed countries, the disease
incidence and its burden, due to STEC and HUS, were low in Australia (8).
Merits of the public health surveillance on HUS
The above facts unequivocally confirm that the HUS surveillance is a way to
monitor the trends in STEC O157 infections. The surveillance is necessary to assess
the strains of STEC leading to severe illness, and is helpful in evaluating the medical
care improvements to control the frequency of HUS in children, having STEC. With
the introduction of a consistent marker of STEC incidence, the HUS surveillance
could become effective in determining the disease prevention measures. However, the
HUS surveillance lacks singular diagnostic test and therefore needs more data to
validate every reported incidence of HUS. This improvement is essential to reduce
the post-diarrheal HUS incidences among the children, belonging to the age group

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below 5 years. That was why the HUS was accorded a place in the Healthy People
2010 goal (10).
Evaluation
As per Elliott et al., 2001, the evaluation of the Australian Paediatric
Surveillance Unit, which is a functional part part of the Public Health Surveillance
System of Australia, has proved that the clinicians perceived surveillance methods as
simple and useful. The case sensitivity assessment was acceptable and the predictive
value of notification was above 70%. The professional support of the pediatric system
and the streamlined reporting scheme, the clinician workload, and the clinical practice
paved the way for a higher level of compliance. The educational impact was evolved
through the dissemination of information, such as newsletters, periodical reports,
presentations, publication, etc. The monitoring of the association between hemolytic
uremic syndrome and Shiga toxin-producing Escherichia coli, were effectively
conducted by the other units (12).
Though the APSU is capable of monitoring the disease incidence trend
management, there is considerable delay in case identification. By giving proper
background information on haemolytic uraemic syndrome cases nationally, the
surveillance system could investigate an outbreak in South Australia, immediately
after the condition was listed on the monthly card. The HUS data have enhanced the
disease control and prevention strategies, such as changing the code for the fermented
meat production, forwarding haemolytic uraemic syndrome notifications to the state
public health departments, and educating the public about food storage and
preparation. Since a surveillance system’s success is solely based on its capability to
meet specific requirements, the CDC has changed its approach, by adopting stringent

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measures in evaluating the surveillance systems. Despite these changes, the
appropriateness in evaluating the surveillance unit was not at all effective (13).
The reason for the above situation was the presence of two fundamental
problems in the system. The first one was the inconsistency in the reported rates of
incidence of infections and the rate of actual incidents. The second issue was the
inability to detect the trends in the non-O157 STEC infections, as they cannot be
detected through routine plating stool specimens. It is because, the passive
surveillance for HUS will not have the microbial diagnostic element, which is salient
to an active surveillance system. Apart from these distinct problems, the authentic
surveillance data are essential for preventing HSU infections, and therefore the
national HUS surveillance system will need to gather and disseminate information for
assessing the emerging new vehicles of STEC transmission (14).
Significance of public health surveillance
In order to put an epidemic under surveillance, it is essential to monitor the
less frequent incidence of outbreaks that affect a very small portion of the population,
when such events occur for a specific period and place. Sometimes, the diseases that
are unimportant, due to the effective control measures, may require re-assessment
because of their capability to emerge again. That means the public health importance
of a health oriented incidence is determined by the method adopted for its prevention.
Their components include:
 Indices of frequency and severity
 Health-related event disparities
 Expenditure for controlling the outbreak
 Methods of prevention
 Clinical action procedures

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 Public apprehension
The system could work only if there is a clear and authentic explanation for
the health-related event that is placed under surveillance. Such details include
symptoms, laboratory results, epidemiology, and other specific information. The
evaluation must relate how the public health surveillance system is integrated with all
other systems of surveillance and health information. It addresses comorbidity and
risk factors, and possible outcomes from the health related event. The components of
the surveillance system include all matters that relate to public health information,
concerns, hardware, software, interface, and ethical standards (5).
Reasons for notification of HUS
Public Health Surveillance of communicable disease is a public health priority
at the global level for preventing the spread of infectious diseases (18). The criteria
for determining a disease as notifiable in Australia are: collection viability, priority,
immediate intervention facility, outbreak potential, fatality rate, societal and
international concerns, program evaluation, and importance to indigenous health.
HUS is a notifiable condition regardless of cause and the infectious aetiology, due to
Shiga toxin-producing Escherichia coli or other infectious agents can result in HUS
(16), while Streptococcus pneumoniae can become more severe with a higher
mortality and morbidity. Around 40 to 60% of children, having HUS needed dialysis,
and 3 to 5% of them die eventually (17).
Conclusion
The public health surveillance in Australia collects, analyses, interprets, and
disseminates data relating to several infectious diseases that are harmful to public
health. The availability of such data enhances the health of the Australians and helps
prevent and eradicate communicable diseases, like Hemolytic uraemic syndrome

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(HUS). The HUS is an acute disease, causing renal damage in children and grownups,
and is a notifiable infectious disease, as per the Public Health Act 1997. The need for
placing such diseases under surveillance is essential to monitor the incidence of
outbreaks and their eradication. However, the surveillance of a contagious disease will
become successful only if it meets the system requirements. Though the Australian
public health surveillance system is efficient enough to control any disease outbreaks,
it still has some weaknesses, despite the unvarying efforts of the Centers for Disease
Control and Prevention (CDC).

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Reference List
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%3D [Accessed 27 August 2017].
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Factors for Shiga Toxin-Producing Escherichia coli-Associated Human
Diseases. American Society of Microbiology. 2015.
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[Accessed 27 August 2017].
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annlrpt-nndssar.htm [Accessed 27 August 2017].
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