Evaluation of a national surveillance unit

AIM—The Australian Paediatric Surveillance Unit (APSU) facilitates national active surveillance of uncommon childhood conditions. This study assessed whether it fulfilled its objectives and satisfied criteria established by the Centers for Disease Control and Prevention (CDC) for evaluating surveillance systems.METHODS—Anonymous questionnaires were sent to users of the system, individual studies were reviewed, and data were collected from independent sources.RESULTS—Seven hundred and sixty six clinicians, 48 investigators, and 15 public health professionals responded to the questionnaires. Clinicians reported that the APSU was useful, 33% saying information provided by the APSU informed or changed their clinical practice. Most (88%) reported that completing monthly report cards was not a burden. Impact on policy development was limited by suboptimal dissemination of information to public health professionals. Flexibility and timeliness were limited by design. Estimated sensitivity of APSU studies ranged from 92% (congenital rubella) to 31% (drowning/near drowning). Positive predictive value of notified cases was over 70% for most studies.CONCLUSION—The APSU fulfils most of its objectives and meets CDC criteria salient to these. Ways in which the APSU could be improved have been identified, as have methodological challenges and limitations in applying CDC guidelines to this type of unit.     

Evaluation of a national surveillance unit.

AIM: The Australian Paediatric Surveillance Unit (APSU) facilitates national active surveillance of uncommon childhood conditions. This study assessed whether it fulfilled its objectives and satisfied criteria established by the Centers for Disease Control and Prevention (CDC) for evaluating surveillance systems. METHODS: Anonymous questionnaires were sent to users of the system, individual studies were reviewed, and data were collected from independent sources. RESULTS: Seven hundred and sixty six clinicians, 48 investigators, and 15 public health professionals responded to the questionnaires. Clinicians reported that the APSU was useful, 33% saying information provided by the APSU informed or changed their clinical practice. Most (88%) reported that completing monthly report cards was not a burden. Impact on policy development was limited by suboptimal dissemination of information to public health professionals. Flexibility and timeliness were limited by design. Estimated sensitivity of APSU studies ranged from 92% (congenital rubella) to 31% (drowning/near drowning). Positive predictive value of notified cases was over 70% for most studies. CONCLUSION: The APSU fulfils most of its objectives and meets CDC criteria salient to these. Ways in which the APSU could be improved have been identified, as have methodological challenges and limitations in applying CDC guidelines to this type of unit.     

Australian Paediatric Surveillance Unit : progress report

The Australian Paediatric Surveillance Unit (APSU), through active surveillance, collects information on the epidemiology of rare or uncommon childhood conditions. This research resource allows paediatricians to collaborate at State, national and international levels. The APSU sends a monthly report card to all (currently 971) paediatricians in Australia, who in turn indicate whether or not they have seen a patient in the last month with any of the conditions listed (98% response rate in 1999). Study investigators, notified by the APSU of positive case reports, obtain demographic and clinical data on the patient from the reporting doctor by postal questionnaire (90% response rate in 1999). Since 1993, the APSU has monitored 27 conditions, including conditions that are vaccine-preventable, otherwise infectious, genetic, congenital and non-communicable. Information collected is disseminated to paediatricians and other health professionals via an annual report, newsletters and publications and is made available to the International Network of Paediatric Surveillance Units. Information provided by the APSU has raised awareness among paediatricians of rare and uncommon childhood conditions, and has been used by health authorities for planning of prevention and intervention strategies and allocation of health resources.     

Diagnostic labelling of autism spectrum disorders in NSW

Aim:   To describe the use of diagnostic labels by clinicians for children with autism spectrum disorders (ASD) and calculate the label-specific and overall agreement between diagnostic labels and Diagnostic and Statistical Manual of Mental Disorders – Fourth Edition (DSM-IV) diagnoses provided by the same clinician.
Methods:   State-wide active surveillance was used to ascertain children newly recognised with one or more DSM-IV criteria for autistic disorder aged 0–15 years (incident cases) in New South Wales (NSW) between July 1999 and December 2000. Clinicians were asked to supply a diagnostic label and then complete DSM-IV criteria for each child reported.
Results:   Questionnaires with diagnostic label and DSM-IV criteria were returned for 348 children. The agreement between labels used and diagnosis based on DSM-IV classification system was the highest for autism (97%) and lower for labels of Asperger disorder, pervasive developmental disorder – not otherwise specified or atypical autism (27%). Kappa overall agreement was 0.31. Level of agreement between label and DSM-IV diagnosis was similar for questionnaires completed by multidisciplinary teams, psychiatrists, paediatricians and psychologists working as part of a team.
Conclusion:   A lack of agreement between the diagnostic labelling used by clinicians and diagnosis based on DSM-IV criteria indicates a lack of consistency in diagnostic communication that is necessary to provide best clinical care, appropriate services and relevant information to parents and carers.     

Impacts of national surveillance for uncommon conditions in childhood

The Australian Paediatric Surveillance Unit (APSU) facilitates the conduct of national collaborative research that is consistent with national health priorities, has potential to impact on public health, and addresses gaps in knowledge. Since 1993 paediatricians and other child health specialists have contributed monthly data on rare childhood conditions to the APSU. Over 40 conditions, including infectious diseases, injuries, vaccine-preventable diseases and genetic disorders have been studied. Information on epidemiology, frequency, diagnosis, management and short-term outcomes of these conditions is collected and provides evidence to support changes to clinical practice, prevention policy and allocation of health resources. In this review we give examples of the value of information gathered through the APSU surveillance system in the last 14 years.     

The frequency of constipation in children with nocturnal enuresis: a comparison with parental reporting

Aims:   To identify the prevalence of constipation in children with nocturnal enuresis presenting to a tertiary paediatric outpatient service and to assess parental and clinician recognition of constipation.
Methods:   A prospective cross-sectional study of children with nocturnal enuresis at presentation to a continence service. Data relating to the child's bowel habits, pattern of enuresis and other history items were obtained from parental questionnaires and paediatrician assessments. Presence and severity of constipation was assessed independently by parents and clinicians. Kappa was used to compare agreement between parental reporting and clinician assessment of constipation.
Results:   Of the 277 participants aged 4.8–17.5 years (median 8.6 years), 36.1% ( n  = 95) were identified as constipated by the clinician-based scoring method ('Constipation Score') compared with 14.1% from parental reporting (Kappa = 0.155, P  = 0.003). Despite the poor overall recognition of constipation by parents, parental and clinician assessment of frequency of bowel motions (Kappa = 0.804) and soiling (Kappa = 0.384) were similar. Major factors influencing parental reporting of constipation were frequency of bowel motions and soiling with less emphasis on straining and stool consistency.
Conclusions:   Prevalence of constipation was high among children with nocturnal enuresis as assessed by clinicians despite poor identification by parents. This may limit optimal diagnosis and management.     

Fire‐related child deaths: What do newspaper case reports tell us?

Objective:   To describe the accuracy and public health relevance of newspaper accounts of child deaths from fire-related incidents.
Methods:   Domestic fire-related deaths of children aged under 15 years in Auckland, New Zealand, over a 10-year period were retrospectively identified from fire service records and the national minimum mortality dataset. Forensic pathology and fire service records were reviewed and this information was compared with reports published within 3 days of the index event in the region's sole daily newspaper.
Results:   All 14 fatal fire-related events (19 deaths) identified using fire service records and the national minimum dataset during the study period were reported in the newspaper with a high degree of detail and accuracy. Only four news items informed readers of specific measures that could prevent such events.
Conclusions:   Daily newspapers can provide reliable, useful and timely surveillance data on the incidence of fire-related childhood deaths. However, these reports often represented missed opportunities to disseminate public health messages that raised awareness of sources of risk and means of preventing fire-related deaths.     

Effects of interview on mood status of pregnant women with high-risk delivery

Background:  Expectant mothers at high risk for preterm labor admitted to the Mother and Child Health Centers (MCH) often have psychological problems and mood disturbances. The purpose of the present study was to evaluate the effects of an interview by health professionals on their mood status.
Methods:  Participants consisted of 52 women admitted to the MCH of Kansai Medical University (KMU) hospital and who had delivered between December 2006 and September 2007. Interview sessions by health professionals consisting of a neonatologist and a clinical psychologist, termed 'KMU baby doctor-team interview', were held once a week. During the interview the neonatologist discussed the physiology of preterm infants and treatment for the possible complications while the clinical psychologist listened to the expectant mothers talk about their anxieties or complaints and responded to their requests as much as possible. To investigate their mood status objectively, the participants were asked to complete the Japanese version of the Profile of Mood States (POMS) before and after the first session.
Results:  On admission, more than 20% of participants ranging from 19 to 42 years of age had mood disturbances in Tension–Anxiety, Depression–Dejection, and Vigor categorized by POMS. The average score for Depression–Dejection, however, significantly improved after the first interview sessions.
Conclusions:  Mood disturbances were observed in a considerable number of expectant mothers at high risk for preterm labor. Interviews by health professionals consisting of a neonatologist and a clinical psychologist may alter their mood status.     

Tertiary paediatric obesity services in Australia

Aim:   To examine the nature and availability of paediatric obesity services in tertiary care settings across the states/territories of Australia.
Methods:   Surveys were sent to all clinicians identified as offering obesity services to children and adolescents. Respondents were asked to identify other service providers in their area, who were also asked to complete the survey.
Results:   Sixteen clinicians responded to the survey, from 20 requests. The clinicians who responded identified nine services in three of the eight states/territories of Australia. Existing services are limited to children and adolescents with severe obesity, with an average of 12 new referrals per service each month and an average waiting time of 5 months for an appointment. Most services involve a multidisciplinary approach, although the mix of staff varies considerably and emphasises nutrition rather than physical activity approaches.
Conclusions:   Despite the public attention devoted to paediatric obesity, tertiary services in Australia are inadequate to meet the increasing incidence and prevalence of this complex condition. The development of tertiary services as part of service delivery arrangements for paediatric obesity and its associated morbidities must become a priority within the health system.     

Satisfaction of care in a tertiary level diabetes clinic: correlations with diabetes knowledge, clinical outcome and health-related quality of life

Aim:   Patient satisfaction is regarded as an integral component of the quality of medical care. Therefore, as part of an ongoing process of outcome assessment, we analysed levels of satisfaction of care among patients and parents in our diabetes clinic and its relationship to short-term metabolic control outcome, diabetes knowledge and health-related quality of life (HRQOL).
Methods:   In 2004, parents and their children aged 5–18 years attending the Royal Children's Hospital (RCH) diabetes clinic completed questionnaires reporting their satisfaction with care provided, HRQOL and diabetes knowledge. Concurrent HbA_1c levels were also recorded. The reporting profile was 83 patients, 24 fathers and 110 mothers.
Results:   Generally, both patients and parents were satisfied with diabetes care provided at our tertiary centre. Satisfaction of care was not associated with the clinical outcome of metabolic control (measured by HbA_1c levels), diabetes knowledge or HRQOL measures.
Conclusion:   Most patients and their parents in the RCH diabetes clinic appear generally satisfied with their diabetes care. The degree of satisfaction of care cannot be presumed according to clinical outcome, diabetes knowledge or HRQOL measures.     

Use of oxygen in the resuscitation of preterm infants: Current opinion and practice in Australia and New Zealand

Aim:   The aim of this paper was to explore the opinions and practices of tertiary health-care professionals in Australia and New Zealand regarding air and oxygen blending (OB) for the resuscitation of preterm infants.
Methods:   Structured questionnaires were sent to the directors of 25 tertiary perinatal units, with instructions to distribute the questionnaires to 15 pertinent clinical staff.
Results:   Response rate was 72% ( n  = 271); medical-staff response was 25%. Sixteen (64%) perinatal units had OB resuscitation equipment. Among respondents, 114 (42%) had access to OB and 73 (27%) had OB for all resuscitations. Pulse oximetry was available to 160 (59%) of respondents. The majority (173, 64%) would initiate resuscitation with Fractional inspired oxygen (FiO₂) ranging from 0.3 to 0.9 (mean 0.5), with 15% and 21% preferring air and 100% oxygen, respectively. There were large variations in managing FiO₂ changes thereafter. Half of the respondents were either unsure (39%) or not convinced (15%) that 100% oxygen during resuscitation would cause harm. Conversely, 42% suggested that OB might improve outcome with bronchopulmonary dysplasia and retinopathy of prematurity being the most important considerations. Most (92%) would advocate for OB in the delivery suite. Set-up cost (50%) and lack of guided experience (38%) ranked highest as barriers to change.
Conclusions:   Two-thirds of the tertiary centres have at least some OB equipment in the delivery suite, but the ways and opinions in which OB is utilised differ widely. Most practitioners would advocate for a change. There is an urgent need for further research to achieve a consistent and meaningful clinical management for OB resuscitation of preterm infants.     

The definition of human viability: a historical perspective

Aim:  To investigate the current concepts related to the definition of human viability in a historical perspective.
Methods:  A review of the international literature was performed by using PubMed, Google, Embase to find definitions of Human Viability. The papers collected were divided chronologically.
Results:  Over the years, many authors have debated the concept of the limit of human viability, starting from Ballantyne in the early 1900. The definition differs from author to author.
Conclusion:  The definition of human viability is still under discussion. It depends primarily, but not only, on gestational age. A number of genetic, cultural, social and technological variables are also influential. This definition could have an impact on legislation and the widespread misunderstanding of this concept in the lay public could also be enhanced by a frank discussion among clinicians and other professionals.     

Self-rated health, psychosocial functioning, and health-related behavior among Thai adolescents

Background:  Despite the popularity of self-rated health (SRH) in Western countries as a useful public health tool, it has only rarely been used in Asian countries. The purpose of the current study was to determine whether measures of psychosocial functioning and health-related factors differ according to SRH in a school-based sample of Thai adolescents.
Methods:  The survey was given to 2519 adolescents attending 10 coeducational secondary high schools in Chiang Mai Province, Thailand and included measures of psychosocial functioning (loneliness, hopelessness, shyness, perceptions of social status, self-rated happiness, and perception of physical attractiveness) and certain health-related factors (height/weight, physical activity, eating breakfast, sleep).
Results:  The proportion of boys (5.1%) reporting that they were not healthy was similar to the proportion of girls (4.6%) making the same rating. These adolescents showed a pattern of overall poor health risk. Compared to adolescent peers who rated their health as healthy or very healthy, they were less physically active, got less sleep, were more likely to be overweight, and scored lower on loneliness, shyness, hopelessness, and self-rated happiness.
Conclusions:  The present pattern of poor health risk warrants attention and supports the merit of using SRH in adolescent health assessment. SRH is easy to obtain and simple to assess and single-item assessments of SRH appear to be valid measures of health status in adults and adolescent. Interventions, such as health counseling, mental health counseling, and health education, can target adolescents who rate themselves as 'not healthy' or report poor health status.     

Four-country surveillance of intestinal intussusception and diarrhoea in children

Aim:   Establishment of baseline epidemiology of intussusception in developing countries has become a necessity with the possibility of reintroduction of rotavirus vaccine. The current study assessed the seasonal trend in cases admitted with intussusceptions and dehydrating acute watery diarrhoea in children aged 2 months to 10 years.
Methods:   In a prospective surveillance study, teaching and research hospital sites in India (Lucknow and Nagpur), Brazil (Fortazela), Egypt (Ismailia) and Kenya (Nairobi) established a surveillance where a network of hospitals with surgical facilities catered to a reference population of about 1–2 million for reporting of intussusception. One large hospital per site also recruited admitted cases of acute watery diarrhoea.
Results:   From April 2004 to March 2006, 173 and 2346 cases of intussusception and diarrhoea, respectively, were recruited. Cases of intussusception had no apparent seasonality. Most cases of intussusception (61.3%) (107/173) were in the ≤1 year age group, with males comprising 68.8% (119/173) of all cases. Hospital mortality of intussusception was 4.2% (4/96). Cases of diarrhoea peaked in March, with 56.6% (1328/2346) of admitted cases being males. Majority (83.1%) of cases of diarrhoea had received antibiotics, and the hospital mortality was 0.8% (18/2280).
Conclusion:   Intussusception in the four participating countries exhibited no seasonal trend. We found that it is feasible to establish a surveillance network for intussusception in developing countries. Future efforts must define population base before the introduction of rotavirus vaccine and continue for some years thereafter.     

Transition in chronic illness: Who is going where?

Aim:   With increasing survival rates for chronic childhood illness, there has been an increasing focus on the transition of clinical care from paediatric to adult services. Data regarding patient numbers are essential for strategic planning and for optimal management. We report on a data collection exercise from the New South Wales Greater Metropolitan Clinical Taskforce Transition Program.
Methods:   Data were collected between August 2004 and October 2005 through face-to-face interviews with over 200 clinicians in 68 clinical services in tertiary paediatric hospitals in New South Wales, providing information on approximately 4200 patients.
Results:   Sixty-eight services kept a database on patients with chronic illness but less than half were electronic. Eight services (12%) could specifically identify patients in the active phase of transition on their databases. The five most prevalent clinical groups requiring transition to adult specialist health care (excluding cerebral palsy and developmental disability) were diabetes, other endocrinology, neurology, spina bifida and gastroenterology.
Conclusions:   There are large numbers of young people with chronic illness and disability who need effective transition to long-term adult care. This study has enabled the identification of paediatric aspects of the transition process that require attention.     

Notification of patients with acute flaccid paralysis since certification of Australia as polio-free

OBJECTIVE: Surveillance of patients presenting with acute flaccid paralysis (AFP) is the World Health Organization (WHO) recommended method for the detection of incident cases of poliovirus infection. Australia was certified free of circulating poliovirus in 2000 but is required to continue AFP surveillance until global certification. Although Australia reached the WHO nominated surveillance target in 2000 and 2001, it was not reached in 2002. Notification rates between states have been variable. We aim to investigate the difference in notification rates by state to determine whether different rates reflect different patterns of disease or different approaches to reporting. METHODS: Notification rates were reviewed by state for the years 1997-2002. The completeness of case ascertainment was reviewed from published studies. Key informants described differences in AFP reporting in states with consistent differences in notification rates. RESULTS: Australia achieved 75% of the WHO surveillance target for AFP cases between 1997 and 1999 and 98% between 2000 and 2002. After 2000, Queensland achieved 150% of its target while Victoria achieved less than 50%. New South Wales reached its target over the entire 6 years but other states and territories were not as consistent. Although the formal process for AFP reporting is uniform throughout Australia, many differences in approach were identified between Victoria and Queensland. CONCLUSION: Maintaining AFP surveillance at the required WHO standard will be more likely in Australia if the populous states are able to notify cases at the same rate as Queensland (since 2000) and New South Wales (in general).     

Predictors (0-10 months) of psychopathology at age 11/2 years - a general population study in The Copenhagen Child Cohort CCC 2000

Background:  Epidemiological studies of mental health problems in the first years of life are few. This study aims to investigate infancy predictors of psychopathology in the second year of life.
Methods:  A random general population sample of 210 children from the Copenhagen Child Birth Cohort CCC 2000 was investigated by data from National Danish registers and data collected prospectively from birth in a general child health surveillance programme. Mental health outcome at 1½ years was assessed by clinical and standardised measures including the Child Behavior Check List 1½–5 (CBCL 1½–5), Infant Toddler Symptom Check List (ITSCL), Checklist for Autism in Toddlers (CHAT), Bayley Scales of Infant Development (BSID II), Mannheim Eltern Interview (MEI), Parent Child Early Relational Assessment (PC ERA) and Parent Infant Relationship Global Assessment Scale (PIR-GAS), and disordered children were diagnosed according to the International Classification of Diseases (ICD-10) and Diagnostic Classification Zero to Three (DC: 0–3).
Results:  Deviant language development in the first 10 months of life predicted the child having any disorder at 1½ years, OR 3.3 (1.4–8.0). Neuro-developmental disorders were predicted by deviant neuro-cognitive functioning, OR 6.8 (2.2–21.4), deviant language development, OR 5.9 (1.9–18.7) and impaired social interaction and communication, OR 3.8 (1.3–11.4). Unwanted pregnancy and parents' negative expectations of the child recorded in the first months of the child's life were significant predictors of relationship disturbances at 1½ years.
Conclusions:  Predictors of neuro-developmental disorders and parent–child relationship disturbances can be identified in the first 10 months of life in children from the general population.     

Promoting shorter duration of ventilator treatment decreases the number of painful procedures in preterm infants

Aim:  To investigate whether promoting shorter ventilator treatment decreases the number of painful procedures and the use of analgesics in preterm infants.
Methods:  Retrospective patient chart review of all preterm infants in one Neonatal Intensive Care Unit (NICU) was carried out in 2000 (n = 240) and 2005 (n = 206). Between these cohorts, early nasal continuous positive airway pressure (nCPAP) application and early extubation policy were introduced.
Results:  Fewer infants were intubated (22 vs. 32%, p = 0.03), the duration of ventilator treatment decreased (6.7 SD 11.3 vs. 9.0 SD 11.1 days, p < 0.001) and nCPAP treatment became more common (41 vs. 25%, p < 0.001) in 2005 than in 2000. Similarly, the infants' exposure to painful procedures did not decrease significantly (61.9 SD 98.5 vs. 67.1 SD 104.3 procedures, p = 0.32) but the procedures related to respiratory support were fewer (45.2 SD 79.5 vs. 68.9 SD 91.1 procedures, p < 0.001) in 2005 than in 2000. In addition, the amount of pain medication used was significantly lower in 2005 than in 2000. One day on a ventilator included more painful procedures than a day on nCPAP (11.2 95% CI: 11.0–11.5 vs. 4.2 95% CI: 4.1–4.4 procedures, p < 0.001) during both study years.
Conclusion:  Early nCPAP and early extubation policies were successfully implemented in an NICU resulting in less invasive respiratory support. This was associated with fewer painful procedures and less pain medication in the preterm infants who required respiratory support. Despite this positive effect, the number of painful procedures in all preterm infants stayed at the same level. Our results provide further support for the use of nCPAP in preterm infants.     

Hip surveillance in Tasmanian children with cerebral palsy

Background:   Children with cerebral palsy (CP) are at risk of hip subluxation. Over time, subluxation can lead to dislocation, deformity and pain. Hip surveillance in the form of an X-ray and clinical examination of this 'at risk group' can identify early subluxation. Early subluxation can be treated, preventing hip dislocation in many cases. Hip surveillance in CP commenced in Tasmania in 1992.
Aims:   To audit the hip surveillance data to date, perform a literature review to understand the emerging evidence for prevention and management of hip subluxation in CP and update hip surveillance guidelines.
Methods:   New guidelines were written and distributed, and an audit of the previous 12 years performed by review of medical files and X-rays.
Results:   Two hundred and eighteen children had been involved in the hip surveillance programme. Fifteen cases of dislocation were recorded in this time. The incidence of subluxation and surgery, as well as the gross motor function classification system (GMFCS) level, was recorded.
Conclusion:   Data from Tasmania showed a similar incidence of hip subluxation according to GMFCS level, and frequency of different surgical interventions as other recent audits. Some children with minor subluxation improved without orthopaedic intervention once weight bearing occurred, which had not before been appreciated. Migration percentage alone is not adequate to fully describe the outcome of hip subluxation. More appropriate measures of outcome in terms of quality of life for children with CP need to be developed.     

Interpersonal psychotherapy with pregnant adolescents: two pilot studies

Objective:  To test the feasibility, acceptability and helpfulness of group Interpersonal Psychotherapy (IPT-PA) for depression in pregnant adolescents.
Method:  Two open clinical trials were conducted of IPT-PA delivered in group format in a New York City public school for pregnant girls. Study 1 tests IPT-PA for management of depressive symptoms by delivery during health class to pregnant girls with varying levels of depressive symptoms ( N  =   14; 10 Hispanic, 3 African-American and 1 bi-racial). Study 2 tests IPT-PA for treatment of depression by delivery after school for self-nominating pregnant girls with DSM-IVR diagnoses of depressive disorder or an adjustment disorder ( N  =   11; 8 African-American, 1 girl Hispanic and 2 bi-racial). Depressive symptoms were assessed using the Beck Depression Inventory and the Edinburgh Depression Scale (for its sensitivity to severe symptoms, the Hamilton Depression Scale was added in Study 2). Clinical diagnosis was assessed using the Schedule for Affective Disorders and Schizophrenia for Children (K-SADS).
Study 1 Results:  At 12-week termination, level of depressive symptoms had decreased by 50%; 13/14 girls showed a decrease in level of symptoms.
Study 2 Results:  At 12-week termination, level of depressive symptoms had decreased by 40%; 10/11 girls showed decrease in level of symptoms and in DSM-IVR clinical diagnosis; treatment gains were maintained at 20-week post-partum follow-up.
Conclusion:  IPT-PA appears feasible and helpful in managing and treating depression in pregnant girls.