Yvonne Zurynski | The University of Sydney (original) (raw)

Papers by Yvonne Zurynski

Research paper thumbnail of Paediatric Active Enhanced Disease Surveillance: A new surveillance system for Australia

Journal of Paediatrics and Child Health, 2013

The Paediatric Active Enhanced Disease Surveillance (PAEDS) is described. PAEDS is active in four... more The Paediatric Active Enhanced Disease Surveillance (PAEDS) is described. PAEDS is active in four tertiary children's hospitals in four states of Australia and aims to address gaps in surveillance for severe vaccine-preventable diseases and adverse events following immunisation. From August 2007 to December 2010, surveillance nurses actively identified and recruited children admitted with: acute flaccid paralysis, varicella infection, intussusception, seizures in infants and pandemic influenza (June-October 2009). Details of presentation, medical and immunisation history, outcome and laboratory results were collected. Completeness of ascertainment was estimated through audits of International Classification of Diseases 10th edition-coded medical records where possible. Seven hundred thirty-three cases matching case definition criteria for the four conditions were recruited. In addition, 601 cases of influenza were recruited during the 2009 pandemic. PAEDS enhanced acute flaccid paralysis surveillance by the Australian Paediatric Surveillance Unit; the World Health Organization surveillance target was met when Australian Paediatric Surveillance Unit and PAEDS cases were combined. Among 133 children hospitalised for varicella, only 16 were vaccinated; samples of vesicle scrapings were collected in 57% for genotyping. Of 122 infants presenting with seizures, only six (12%) had received a vaccine in the last 7 days. Intussusception was more frequent among infants receiving their first dose of either of the rotavirus vaccines. Results informed policy and education for parents and health professionals. Preliminary audits of medical records suggest excellent ascertainment through PAEDS. PAEDS provides important, previously unavailable data to inform public health policy, clinical practice and community confidence. It has potential to respond quickly during outbreaks and epidemics.

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2012

Communicable diseases intelligence quarterly report, Dec 31, 2013

Acute fl accid paralysis The World Health Organization (WHO) surveillance target of at least 1 pe... more Acute fl accid paralysis The World Health Organization (WHO) surveillance target of at least 1 per 100,000 children aged less than 15 years has once again been reached by combining data from the PAEDS surveillance system and the APSU. Following review by the Australian Polio Expert Panel there were 62 confirmed cases of AFP reported in 2011. The most common diagnoses

Research paper thumbnail of Changes in public perceptions and experiences of the Australian health‐care system: A decade of change

Health Expectations

The views and experiences of the Australian public are an important barometer of the health syste... more The views and experiences of the Australian public are an important barometer of the health system. This study provides key findings about the changing views held by Australians over time regarding their individual experiences and perceptions of the overall performance of the health system.

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2011

Communicable diseases intelligence quarterly report, 2012

The Australian Paediatric Surveillance Unit (APSU) continues to facilitate national active survei... more The Australian Paediatric Surveillance Unit (APSU) continues to facilitate national active surveillance of uncommon childhood conditions. In 2011, its 18th year of operation, a range of infectious, vaccine-preventable, mental health, congenital and genetic conditions, and injuries were studied. From 1994 to the end of 2011, the APSU had run a total of 52 surveillance studies. For many childhood conditions, the APSU provides the only mechanism for national data collection. In 2011, the APSU conducted national surveillance for acute flaccid paralysis (AFP), congenital cytomegalovirus (cCMV), congenital rubella, perinatal exposure to HIV and HIV infection, neonatal herpes simplex virus (HSV) infection, congenital neonatal varicella and severe complications of varicella. Surveillance for the severe complications of influenza was undertaken during the influenza season for the 4th year in a row.

Research paper thumbnail of Implementation of Electronic Medical Records in Mental Health Settings: Scoping Review

JMIR Mental Health, 2021

Background The success of electronic medical records (EMRs) is dependent on implementation featur... more Background The success of electronic medical records (EMRs) is dependent on implementation features, such as usability and fit with clinical processes. The use of EMRs in mental health settings brings additional and specific challenges owing to the personal, detailed, narrative, and exploratory nature of the assessment, diagnosis, and treatment in this field. Understanding the determinants of successful EMR implementation is imperative to guide the future design, implementation, and investment of EMRs in the mental health field. Objective We intended to explore evidence on effective EMR implementation for mental health settings and provide recommendations to support the design, adoption, usability, and outcomes. Methods The scoping review combined two search strategies that focused on clinician-facing EMRs, one for primary studies in mental health settings and one for reviews of peer-reviewed literature in any health setting. Three databases (Medline, EMBASE, and PsycINFO) were sear...

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2015

Communicable diseases intelligence quarterly report, 2017

The APSU was established in 1993 to facilitate national active surveillance of uncommon diseases ... more The APSU was established in 1993 to facilitate national active surveillance of uncommon diseases of childhood including selected communicable diseases. This report includes data on the following conditions: acute flaccid paralysis (AFP), a surrogate condition for poliovirus infection; congenital cytomegalovirus; congenital rubella; perinatal exposure to HIV and paediatric HIV infection; neonatal and infant herpes simplex virus (HSV); congenital varicella; neonatal varicella; and juvenile-onset recurrent respiratory papillomatosis (JoRRP). Surveillance of severe complications of influenza was undertaken during the influenza season (1 July to 30 September 2015).

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2014

Communicable diseases intelligence quarterly report, 2016

The Australian Paediatric Surveillance Unit (APSU) was established in 1993 to facilitate national... more The Australian Paediatric Surveillance Unit (APSU) was established in 1993 to facilitate national active surveillance of uncommon diseases of childhood including selected communicable diseases. This report includes data on the following conditions: acute flaccid paralysis (AFP), a surrogate condition for poliovirus infection; congenital cytomegalovirus (cCMV); congenital rubella; perinatal exposure to HIV and paediatric HIV infection; neonatal herpes simplex virus (HSV); congenital varicella; neonatal varicella; and juvenile onset recurrent respiratory papillomatosis (JoRRP). Surveillance of severe complications of influenza was undertaken during the influenza season (July to September 2014).

Research paper thumbnail of Social prescribing: a rapid literature review to inform primary care policy in Australia

Regarding the impact on patients, GPs, link-workers, community care organisations, and on the hea... more Regarding the impact on patients, GPs, link-workers, community care organisations, and on the health system, our review found mixed results with some positive, mixed and negative outcomes reported. This highlights the uncertainty and difficulty in assessing the effectiveness of SP, as reported in the peer reviewed literature. Quantitative outcome studies were few and showed inconsistent results. This may be because the quantitative measures used for evaluation of outcomes tended to focus on health-related outcomes and may not adequately capture more complex concepts, such as community connectedness, social engagement, confidence, willingness to give and receive peer-support, and confidence to access services and self-determination and selfcare. These hard to quantify concepts were captured in qualitative studies, which predominantly reported positive outcomes for patients. The included studies reported enablers of implementation of SP programs including: a phased rollout with clear and appropriate organisation, infrastructure and management. Strong stakeholder engagement from all relevant sectors, good communication and a clear understanding of shared goals were also cited. Identified barriers included a lack of coordination and collaboration among stakeholders, and limited understanding of SP and limited engagement with frontline health professionals including GPs. Concerns about sustainable funding for community services and equitable access for patients were considered important for the sustainability of SP programs. Our rapid review reveals the emerging state of SP. It highlights the need for long-term quantitative and qualitative evaluations. This rapid literature review only covered studies published in the peerreviewed literature. This is a limitation because the implementation of SP programs is often led by health services or not-for-profits and non-governmental organisations, and evaluations tend to be published in policy documents, unpublished reports, and guidelines that do not appear in peerreviewed journals. Therefore, this rapid review of the peer reviewed literature should be supplemented by a review of the grey literature. RECOMMENDATIONS Based on our literature review, we have developed a set of recommendations that should be implemented if Australia were to adopt SP. 1. The RACGP, CHF and the Australian Department of Health should work together in consultation with the National Social Prescribing Roundtable to include social prescribing in the 10 Year Primary Health Care Plan and the National Preventive Health Strategy. 2. Funding is needed for the development, implementation and evaluation of Australian SP. 3. The development of models should be co-designed with all relevant stakeholders. 4. Models of SP should involve a navigator/link worker whose role is clearly defined but flexible enough to enable creativity and individual tailoring of needed interventions for patients. 5. The role and personal skills and attributes of navigators/link-workers should be defined. 6. Developed models should undergo rigorous evaluation using robust implementation science and systems science approaches and mixed methods research (qualitative and quantitative) to ensure sufficient depth of understanding of what worked, why it worked and in what contexts, to support future scaling up and spreading of successful models. 7. That any models of SP developed in the Australian context consider model sustainability at the core of evaluations.

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2013

Communicable diseases intelligence quarterly report, 2014

This report provides an update on the surveillance conducted by the Australian Paediatric Surveil... more This report provides an update on the surveillance conducted by the Australian Paediatric Surveillance Unit (APSU) during the period January to December 2013. The APSU facilitates national active surveillance of uncommon diseases of childhood including selected communicable diseases. This report includes data on the following conditions: acute flaccid paralysis (AFP), congenital cytomegalovirus (cCMV), congenital rubella, perinatal exposure to HIV and paediatric HIV infection, neonatal herpes simplex virus (HSV), congenital varicella, neonatal varicella, severe complications of varicella and juvenile onset recurrent respiratory papillomatosis (JoRRP). Surveillance of severe complications of influenza was undertaken during the influenza season (July to September 2013).

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2008 and 2009

Communicable diseases intelligence quarterly report, 2010

The key aspects and features of the Annual report of the Australian Pediatric Surveillance Unit (... more The key aspects and features of the Annual report of the Australian Pediatric Surveillance Unit (APSU) for 2008 and 2009 are discussed. Some of the different activities as well as surveillance carried out by APSU during the same period is highlighted.

Research paper thumbnail of Funding research translation: how we got here and what to do next

Australian and New Zealand Journal of Public Health

Australian and New Zealand Journal of Public Health 2021 vol. 45 no. 5 © 2021 The Authors This is... more Australian and New Zealand Journal of Public Health 2021 vol. 45 no. 5 © 2021 The Authors This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. In 2019, avoidable patient harm cost Australian public hospitals more than AU$4.1 billion – that’s nearly 9% of the total yearly healthcare expenditure in Australia.1 This occurred despite the extensive evidence base that is designed to support improved patient care, which is growing every day.2 Poor adherence to best practice guidelines and delays in translating new evidence into clinical practice and health policy, and the improvement challenge that is a wicked problem,3 mean that these harms are likely to continue.4

Research paper thumbnail of Learning health systems: A review of key topic areas and bibliometric trends

Research paper thumbnail of Living in Rural and Remote Australia: Health care impacts for children with medical complexity and their families

International Journal of Integrated Care, Oct 23, 2018

Brown; Living in Rural and Remote Australia: Health care impacts for children with medical comple... more Brown; Living in Rural and Remote Australia: Health care impacts for children with medical complexity and their families that this would alleviate the burdens that families currently experienced while up-skilling local services. Conclusions comprising key findings: Engaging with families of CMC provides an added level of understanding of the effect geographical isolation has on care delivery. Inclusion of the views of patients/parents in the co-design of services is crucial to the success of any new service. Lessons learned: Engaging directly with families can provide a wealth of unique knowledge important in driving successful integration of care. Limitations: The families who took part in the interviews were from a sample area of the district, which excluded children and families located in the most isolated/remote areas. Suggestions for future research: A larger sample group which distinguishes CMC by condition, facility, and those involved with additional clinical supports such as Clinical Nurse Consultant's CNCs would provide a greater understanding of gaps specific to subgroups within this paediatric population.

Research paper thumbnail of It’s all in the App! Co-design approach in the development of the MyHealthMemory app for families caring for children with complex and chronic conditions

International Journal of Integrated Care

It's all in the App! Co-design approach in the development of the MyHealthMemory app for families... more It's all in the App! Co-design approach in the development of the MyHealthMemory app for families caring for children with complex and chronic conditions

Research paper thumbnail of Safety and effectiveness of stoss therapy in children

Research paper thumbnail of Can we predict the need for lung transplantation in children with cystic fibrosis?

Paediatric Respiratory Reviews

Research paper thumbnail of Does evidence-based medicine training improve doctors' knowledge, practice and patient outcomes? A systematic review of the evidence

Medical teacher, Jan 17, 2018

Courses in Evidence-Based Medicine (EBM) for doctors have consistently demonstrated short-term im... more Courses in Evidence-Based Medicine (EBM) for doctors have consistently demonstrated short-term improvements in knowledge. However, there is no strong evidence linking EBM training to changes in clinical practice or patient outcomes. This systematic review investigates whether EBM training leads to sustained improvements in doctors' knowledge and practice behaviors that may also facilitate changes in patient outcomes and experiences. A literature search was undertaken in Ovid Medline, Ovid Embase, The Cochrane Library, ERIC and Scopus. Studies published from 1997 to 2016 that assessed outcomes of EBM educational interventions amongst doctors and used measures of knowledge, skills, attitudes, practice or patient outcomes were included. Fifteen studies were included in the analysis: four randomized controlled trials (RCTs), three non-RCTs, and eight before-after (longitudinal cohort) studies. Heterogeneity among studies prevented meaningful comparisons. Varying degrees of bias due ...

Research paper thumbnail of Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays

Orphanet journal of rare diseases, Apr 11, 2017

Children and families living with rare disease often experience significant health, psychosocial,... more Children and families living with rare disease often experience significant health, psychosocial, economic burdens and diagnostic delays. Experiences appear to be constant, regardless of the specific rare disease diagnosis. Systematically collected Australian data to support policy response on rare diseases are scarce. We address this gap by providing survey results about 462 children aged <19 years living with approximately 200 different rare diseases. Of 462 children, 96% were born in Australia, 55% were male, median age was 8.9 years (0-18.2). Four-hundred-and-twenty-eight (93%) had received a definitive diagnosis but 29 (7%) remained undiagnosed. Before receiving the correct diagnosis 38% consulted ≥ 6 different doctors. Among those with a diagnosis, 37% believed the diagnosis was delayed and 27% initially received a wrong diagnosis. Consequences of delayed diagnosis include anxiety, loss of reproductive confidence because of an ill-defined genetic risk, frustration and stres...

Research paper thumbnail of Female genital mutilation in children presenting to Australian paediatricians

Archives of Disease in Childhood, 2017

ObjectiveThe WHO reports that female genital mutilation/cutting (FGM/C) is an ancient cultural pr... more ObjectiveThe WHO reports that female genital mutilation/cutting (FGM/C) is an ancient cultural practice prevalent in many countries. FGM/C has been reported among women resident in Australia. Our paper provides the first description of FGM/C in Australian children.DesignCross-sectional survey conducted in April–June 2014.SettingPaediatricians and other child health specialists recruited through the Australian Paediatric Surveillance Unit were asked to report children aged <18 years with FGM/C seen in the last 5 years, and to provide data for demographics, FGM/C type, complications and referral for each case.ParticipantsOf 1311 eligible paediatricians/child health specialists, 1003 (76.5%) responded.ResultsTwenty-three (2.3%) respondents had seen 59 children with FGM/C and provided detailed data for 31. Most (89.7%) were identified during refugee screening and were born in Africa. Three (10.3%) were born in Australia: two had FGM/C in Australia and one in Indonesia. All parents we...

Research paper thumbnail of Cryopyrin-associated periodic syndrome in Australian children and adults: Epidemiological, clinical and treatment characteristics

Journal of Paediatrics and Child Health, 2016

Cryopyrin-associated periodic syndromes (CAPS) encapsulate three auto-inflammatory conditions, ra... more Cryopyrin-associated periodic syndromes (CAPS) encapsulate three auto-inflammatory conditions, ranging in severity from mild (familial cold auto-inflammatory syndrome: FCAS), moderate (Muckle-Wells syndrome: MWS) and severe (neonatal onset multi-inflammatory disorder: NOMID). We aimed to describe the epidemiology, clinical features and outcomes of Australian children and adults with CAPS. Patients were identified and clinical data collected through a questionnaire sent during 2012-2013 to clinicians reporting to the Australian Paediatric Surveillance Unit and subscribing to the Australasian Societies for Allergy/Immunology, Rheumatology and Dermatology. Eighteen cases of CAPS were identified (8 NOMID; 8 MWS, 2 FCAS); 12 in children &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;18 years of age. The estimated population prevalence of CAPS was 1 per million persons. Diagnostic delay was frequent, particularly in those with milder phenotypes (median diagnostic delay in MWS/FCAS 20.6 years compared with NOMID 2.1 years; P = 0.04). Common presenting features included urticaria (100%), periodic fever (78%), arthralgia (72%) and sensorineural hearing loss (61%). Almost all (90%) MWS patients had a family member similarly affected compared with none in the NOMID group (P = 0.004). A significant proportion of patients on anti-interleukin (IL)-1 therapy (n = 13) no longer had systemic inflammation. Only 50% with sensorineural hearing loss had hearing restored on anti-IL-1 therapy. Although CAPS are rare, patients often endured prolonged periods of systemic inflammation. This is despite almost all MWS patients having family members with similar symptoms and children with NOMID presenting with chronic infantile urticaria associated with multi-system inflammation. Hearing loss in NOMID/MWS was frequent, and reversible in only 50% of cases.

Research paper thumbnail of Paediatric Active Enhanced Disease Surveillance: A new surveillance system for Australia

Journal of Paediatrics and Child Health, 2013

The Paediatric Active Enhanced Disease Surveillance (PAEDS) is described. PAEDS is active in four... more The Paediatric Active Enhanced Disease Surveillance (PAEDS) is described. PAEDS is active in four tertiary children&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;#39;s hospitals in four states of Australia and aims to address gaps in surveillance for severe vaccine-preventable diseases and adverse events following immunisation. From August 2007 to December 2010, surveillance nurses actively identified and recruited children admitted with: acute flaccid paralysis, varicella infection, intussusception, seizures in infants and pandemic influenza (June-October 2009). Details of presentation, medical and immunisation history, outcome and laboratory results were collected. Completeness of ascertainment was estimated through audits of International Classification of Diseases 10th edition-coded medical records where possible. Seven hundred thirty-three cases matching case definition criteria for the four conditions were recruited. In addition, 601 cases of influenza were recruited during the 2009 pandemic. PAEDS enhanced acute flaccid paralysis surveillance by the Australian Paediatric Surveillance Unit; the World Health Organization surveillance target was met when Australian Paediatric Surveillance Unit and PAEDS cases were combined. Among 133 children hospitalised for varicella, only 16 were vaccinated; samples of vesicle scrapings were collected in 57% for genotyping. Of 122 infants presenting with seizures, only six (12%) had received a vaccine in the last 7 days. Intussusception was more frequent among infants receiving their first dose of either of the rotavirus vaccines. Results informed policy and education for parents and health professionals. Preliminary audits of medical records suggest excellent ascertainment through PAEDS. PAEDS provides important, previously unavailable data to inform public health policy, clinical practice and community confidence. It has potential to respond quickly during outbreaks and epidemics.

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2012

Communicable diseases intelligence quarterly report, Dec 31, 2013

Acute fl accid paralysis The World Health Organization (WHO) surveillance target of at least 1 pe... more Acute fl accid paralysis The World Health Organization (WHO) surveillance target of at least 1 per 100,000 children aged less than 15 years has once again been reached by combining data from the PAEDS surveillance system and the APSU. Following review by the Australian Polio Expert Panel there were 62 confirmed cases of AFP reported in 2011. The most common diagnoses

Research paper thumbnail of Changes in public perceptions and experiences of the Australian health‐care system: A decade of change

Health Expectations

The views and experiences of the Australian public are an important barometer of the health syste... more The views and experiences of the Australian public are an important barometer of the health system. This study provides key findings about the changing views held by Australians over time regarding their individual experiences and perceptions of the overall performance of the health system.

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2011

Communicable diseases intelligence quarterly report, 2012

The Australian Paediatric Surveillance Unit (APSU) continues to facilitate national active survei... more The Australian Paediatric Surveillance Unit (APSU) continues to facilitate national active surveillance of uncommon childhood conditions. In 2011, its 18th year of operation, a range of infectious, vaccine-preventable, mental health, congenital and genetic conditions, and injuries were studied. From 1994 to the end of 2011, the APSU had run a total of 52 surveillance studies. For many childhood conditions, the APSU provides the only mechanism for national data collection. In 2011, the APSU conducted national surveillance for acute flaccid paralysis (AFP), congenital cytomegalovirus (cCMV), congenital rubella, perinatal exposure to HIV and HIV infection, neonatal herpes simplex virus (HSV) infection, congenital neonatal varicella and severe complications of varicella. Surveillance for the severe complications of influenza was undertaken during the influenza season for the 4th year in a row.

Research paper thumbnail of Implementation of Electronic Medical Records in Mental Health Settings: Scoping Review

JMIR Mental Health, 2021

Background The success of electronic medical records (EMRs) is dependent on implementation featur... more Background The success of electronic medical records (EMRs) is dependent on implementation features, such as usability and fit with clinical processes. The use of EMRs in mental health settings brings additional and specific challenges owing to the personal, detailed, narrative, and exploratory nature of the assessment, diagnosis, and treatment in this field. Understanding the determinants of successful EMR implementation is imperative to guide the future design, implementation, and investment of EMRs in the mental health field. Objective We intended to explore evidence on effective EMR implementation for mental health settings and provide recommendations to support the design, adoption, usability, and outcomes. Methods The scoping review combined two search strategies that focused on clinician-facing EMRs, one for primary studies in mental health settings and one for reviews of peer-reviewed literature in any health setting. Three databases (Medline, EMBASE, and PsycINFO) were sear...

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2015

Communicable diseases intelligence quarterly report, 2017

The APSU was established in 1993 to facilitate national active surveillance of uncommon diseases ... more The APSU was established in 1993 to facilitate national active surveillance of uncommon diseases of childhood including selected communicable diseases. This report includes data on the following conditions: acute flaccid paralysis (AFP), a surrogate condition for poliovirus infection; congenital cytomegalovirus; congenital rubella; perinatal exposure to HIV and paediatric HIV infection; neonatal and infant herpes simplex virus (HSV); congenital varicella; neonatal varicella; and juvenile-onset recurrent respiratory papillomatosis (JoRRP). Surveillance of severe complications of influenza was undertaken during the influenza season (1 July to 30 September 2015).

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2014

Communicable diseases intelligence quarterly report, 2016

The Australian Paediatric Surveillance Unit (APSU) was established in 1993 to facilitate national... more The Australian Paediatric Surveillance Unit (APSU) was established in 1993 to facilitate national active surveillance of uncommon diseases of childhood including selected communicable diseases. This report includes data on the following conditions: acute flaccid paralysis (AFP), a surrogate condition for poliovirus infection; congenital cytomegalovirus (cCMV); congenital rubella; perinatal exposure to HIV and paediatric HIV infection; neonatal herpes simplex virus (HSV); congenital varicella; neonatal varicella; and juvenile onset recurrent respiratory papillomatosis (JoRRP). Surveillance of severe complications of influenza was undertaken during the influenza season (July to September 2014).

Research paper thumbnail of Social prescribing: a rapid literature review to inform primary care policy in Australia

Regarding the impact on patients, GPs, link-workers, community care organisations, and on the hea... more Regarding the impact on patients, GPs, link-workers, community care organisations, and on the health system, our review found mixed results with some positive, mixed and negative outcomes reported. This highlights the uncertainty and difficulty in assessing the effectiveness of SP, as reported in the peer reviewed literature. Quantitative outcome studies were few and showed inconsistent results. This may be because the quantitative measures used for evaluation of outcomes tended to focus on health-related outcomes and may not adequately capture more complex concepts, such as community connectedness, social engagement, confidence, willingness to give and receive peer-support, and confidence to access services and self-determination and selfcare. These hard to quantify concepts were captured in qualitative studies, which predominantly reported positive outcomes for patients. The included studies reported enablers of implementation of SP programs including: a phased rollout with clear and appropriate organisation, infrastructure and management. Strong stakeholder engagement from all relevant sectors, good communication and a clear understanding of shared goals were also cited. Identified barriers included a lack of coordination and collaboration among stakeholders, and limited understanding of SP and limited engagement with frontline health professionals including GPs. Concerns about sustainable funding for community services and equitable access for patients were considered important for the sustainability of SP programs. Our rapid review reveals the emerging state of SP. It highlights the need for long-term quantitative and qualitative evaluations. This rapid literature review only covered studies published in the peerreviewed literature. This is a limitation because the implementation of SP programs is often led by health services or not-for-profits and non-governmental organisations, and evaluations tend to be published in policy documents, unpublished reports, and guidelines that do not appear in peerreviewed journals. Therefore, this rapid review of the peer reviewed literature should be supplemented by a review of the grey literature. RECOMMENDATIONS Based on our literature review, we have developed a set of recommendations that should be implemented if Australia were to adopt SP. 1. The RACGP, CHF and the Australian Department of Health should work together in consultation with the National Social Prescribing Roundtable to include social prescribing in the 10 Year Primary Health Care Plan and the National Preventive Health Strategy. 2. Funding is needed for the development, implementation and evaluation of Australian SP. 3. The development of models should be co-designed with all relevant stakeholders. 4. Models of SP should involve a navigator/link worker whose role is clearly defined but flexible enough to enable creativity and individual tailoring of needed interventions for patients. 5. The role and personal skills and attributes of navigators/link-workers should be defined. 6. Developed models should undergo rigorous evaluation using robust implementation science and systems science approaches and mixed methods research (qualitative and quantitative) to ensure sufficient depth of understanding of what worked, why it worked and in what contexts, to support future scaling up and spreading of successful models. 7. That any models of SP developed in the Australian context consider model sustainability at the core of evaluations.

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2013

Communicable diseases intelligence quarterly report, 2014

This report provides an update on the surveillance conducted by the Australian Paediatric Surveil... more This report provides an update on the surveillance conducted by the Australian Paediatric Surveillance Unit (APSU) during the period January to December 2013. The APSU facilitates national active surveillance of uncommon diseases of childhood including selected communicable diseases. This report includes data on the following conditions: acute flaccid paralysis (AFP), congenital cytomegalovirus (cCMV), congenital rubella, perinatal exposure to HIV and paediatric HIV infection, neonatal herpes simplex virus (HSV), congenital varicella, neonatal varicella, severe complications of varicella and juvenile onset recurrent respiratory papillomatosis (JoRRP). Surveillance of severe complications of influenza was undertaken during the influenza season (July to September 2013).

Research paper thumbnail of Australian Paediatric Surveillance Unit annual report, 2008 and 2009

Communicable diseases intelligence quarterly report, 2010

The key aspects and features of the Annual report of the Australian Pediatric Surveillance Unit (... more The key aspects and features of the Annual report of the Australian Pediatric Surveillance Unit (APSU) for 2008 and 2009 are discussed. Some of the different activities as well as surveillance carried out by APSU during the same period is highlighted.

Research paper thumbnail of Funding research translation: how we got here and what to do next

Australian and New Zealand Journal of Public Health

Australian and New Zealand Journal of Public Health 2021 vol. 45 no. 5 © 2021 The Authors This is... more Australian and New Zealand Journal of Public Health 2021 vol. 45 no. 5 © 2021 The Authors This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made. In 2019, avoidable patient harm cost Australian public hospitals more than AU$4.1 billion – that’s nearly 9% of the total yearly healthcare expenditure in Australia.1 This occurred despite the extensive evidence base that is designed to support improved patient care, which is growing every day.2 Poor adherence to best practice guidelines and delays in translating new evidence into clinical practice and health policy, and the improvement challenge that is a wicked problem,3 mean that these harms are likely to continue.4

Research paper thumbnail of Learning health systems: A review of key topic areas and bibliometric trends

Research paper thumbnail of Living in Rural and Remote Australia: Health care impacts for children with medical complexity and their families

International Journal of Integrated Care, Oct 23, 2018

Brown; Living in Rural and Remote Australia: Health care impacts for children with medical comple... more Brown; Living in Rural and Remote Australia: Health care impacts for children with medical complexity and their families that this would alleviate the burdens that families currently experienced while up-skilling local services. Conclusions comprising key findings: Engaging with families of CMC provides an added level of understanding of the effect geographical isolation has on care delivery. Inclusion of the views of patients/parents in the co-design of services is crucial to the success of any new service. Lessons learned: Engaging directly with families can provide a wealth of unique knowledge important in driving successful integration of care. Limitations: The families who took part in the interviews were from a sample area of the district, which excluded children and families located in the most isolated/remote areas. Suggestions for future research: A larger sample group which distinguishes CMC by condition, facility, and those involved with additional clinical supports such as Clinical Nurse Consultant's CNCs would provide a greater understanding of gaps specific to subgroups within this paediatric population.

Research paper thumbnail of It’s all in the App! Co-design approach in the development of the MyHealthMemory app for families caring for children with complex and chronic conditions

International Journal of Integrated Care

It's all in the App! Co-design approach in the development of the MyHealthMemory app for families... more It's all in the App! Co-design approach in the development of the MyHealthMemory app for families caring for children with complex and chronic conditions

Research paper thumbnail of Safety and effectiveness of stoss therapy in children

Research paper thumbnail of Can we predict the need for lung transplantation in children with cystic fibrosis?

Paediatric Respiratory Reviews

Research paper thumbnail of Does evidence-based medicine training improve doctors' knowledge, practice and patient outcomes? A systematic review of the evidence

Medical teacher, Jan 17, 2018

Courses in Evidence-Based Medicine (EBM) for doctors have consistently demonstrated short-term im... more Courses in Evidence-Based Medicine (EBM) for doctors have consistently demonstrated short-term improvements in knowledge. However, there is no strong evidence linking EBM training to changes in clinical practice or patient outcomes. This systematic review investigates whether EBM training leads to sustained improvements in doctors' knowledge and practice behaviors that may also facilitate changes in patient outcomes and experiences. A literature search was undertaken in Ovid Medline, Ovid Embase, The Cochrane Library, ERIC and Scopus. Studies published from 1997 to 2016 that assessed outcomes of EBM educational interventions amongst doctors and used measures of knowledge, skills, attitudes, practice or patient outcomes were included. Fifteen studies were included in the analysis: four randomized controlled trials (RCTs), three non-RCTs, and eight before-after (longitudinal cohort) studies. Heterogeneity among studies prevented meaningful comparisons. Varying degrees of bias due ...

Research paper thumbnail of Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays

Orphanet journal of rare diseases, Apr 11, 2017

Children and families living with rare disease often experience significant health, psychosocial,... more Children and families living with rare disease often experience significant health, psychosocial, economic burdens and diagnostic delays. Experiences appear to be constant, regardless of the specific rare disease diagnosis. Systematically collected Australian data to support policy response on rare diseases are scarce. We address this gap by providing survey results about 462 children aged <19 years living with approximately 200 different rare diseases. Of 462 children, 96% were born in Australia, 55% were male, median age was 8.9 years (0-18.2). Four-hundred-and-twenty-eight (93%) had received a definitive diagnosis but 29 (7%) remained undiagnosed. Before receiving the correct diagnosis 38% consulted ≥ 6 different doctors. Among those with a diagnosis, 37% believed the diagnosis was delayed and 27% initially received a wrong diagnosis. Consequences of delayed diagnosis include anxiety, loss of reproductive confidence because of an ill-defined genetic risk, frustration and stres...

Research paper thumbnail of Female genital mutilation in children presenting to Australian paediatricians

Archives of Disease in Childhood, 2017

ObjectiveThe WHO reports that female genital mutilation/cutting (FGM/C) is an ancient cultural pr... more ObjectiveThe WHO reports that female genital mutilation/cutting (FGM/C) is an ancient cultural practice prevalent in many countries. FGM/C has been reported among women resident in Australia. Our paper provides the first description of FGM/C in Australian children.DesignCross-sectional survey conducted in April–June 2014.SettingPaediatricians and other child health specialists recruited through the Australian Paediatric Surveillance Unit were asked to report children aged <18 years with FGM/C seen in the last 5 years, and to provide data for demographics, FGM/C type, complications and referral for each case.ParticipantsOf 1311 eligible paediatricians/child health specialists, 1003 (76.5%) responded.ResultsTwenty-three (2.3%) respondents had seen 59 children with FGM/C and provided detailed data for 31. Most (89.7%) were identified during refugee screening and were born in Africa. Three (10.3%) were born in Australia: two had FGM/C in Australia and one in Indonesia. All parents we...

Research paper thumbnail of Cryopyrin-associated periodic syndrome in Australian children and adults: Epidemiological, clinical and treatment characteristics

Journal of Paediatrics and Child Health, 2016

Cryopyrin-associated periodic syndromes (CAPS) encapsulate three auto-inflammatory conditions, ra... more Cryopyrin-associated periodic syndromes (CAPS) encapsulate three auto-inflammatory conditions, ranging in severity from mild (familial cold auto-inflammatory syndrome: FCAS), moderate (Muckle-Wells syndrome: MWS) and severe (neonatal onset multi-inflammatory disorder: NOMID). We aimed to describe the epidemiology, clinical features and outcomes of Australian children and adults with CAPS. Patients were identified and clinical data collected through a questionnaire sent during 2012-2013 to clinicians reporting to the Australian Paediatric Surveillance Unit and subscribing to the Australasian Societies for Allergy/Immunology, Rheumatology and Dermatology. Eighteen cases of CAPS were identified (8 NOMID; 8 MWS, 2 FCAS); 12 in children &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;lt;18 years of age. The estimated population prevalence of CAPS was 1 per million persons. Diagnostic delay was frequent, particularly in those with milder phenotypes (median diagnostic delay in MWS/FCAS 20.6 years compared with NOMID 2.1 years; P = 0.04). Common presenting features included urticaria (100%), periodic fever (78%), arthralgia (72%) and sensorineural hearing loss (61%). Almost all (90%) MWS patients had a family member similarly affected compared with none in the NOMID group (P = 0.004). A significant proportion of patients on anti-interleukin (IL)-1 therapy (n = 13) no longer had systemic inflammation. Only 50% with sensorineural hearing loss had hearing restored on anti-IL-1 therapy. Although CAPS are rare, patients often endured prolonged periods of systemic inflammation. This is despite almost all MWS patients having family members with similar symptoms and children with NOMID presenting with chronic infantile urticaria associated with multi-system inflammation. Hearing loss in NOMID/MWS was frequent, and reversible in only 50% of cases.