Success in Closing the Gap: favourable neonatal outcomes in a metropolitan Aboriginal Maternity Group Practice Program

Australian Aboriginal women are at greater risk of complications during pregnancy and labour than non-Indigenous Australian women. There are for many reasons for this, including a higher prevalence of medical, lifestyle and socioeconomic risk factors, and lower antenatal care participation rates. Providing culturally competent services improves antenatal care uptake, but historically there has been a lack of such services in Western Australia.1 Element Two of the National Partnership Agreement on Indigenous Early Childhood Development (IECD2), part of the Closing the Gap suite of health care reforms initiated in late 2008, aimed to improve the access of Aboriginal women (particularly teenagers) to antenatal care and other women’s health care services.2

The Aboriginal Maternity Group Practice Program (AMGPP) was funded under this element, and commenced operating at various locations in the area of Perth served by the South Metropolitan Health Service (SMHS) in early to mid 2011. The SMHS spans the entire metropolitan area south of the Swan River (estimated population in 2012: 893 379, of whom 1.8% are Aboriginal residents)3; the remainder of metropolitan Perth is served by the North Metropolitan Health Service (NMHS). There are five health districts in the SMHS, each with its own hospital (four hospitals are public and one is private). The district hospitals provide antenatal care to local women, except for those at the greatest risk, who are referred to the sole public tertiary maternity hospital in Perth (King Edward Memorial Hospital [KEMH]; located in the NMHS). The criteria for referral differ between hospitals, but generally include type 1 diabetes, illicit substance use, and being younger than 16 years of age. During 2011, 369 children were born to local Aboriginal women in this area, equating to 3.1% of all births to SMHS residents and 21.4% of all births to Aboriginal women in WA.4

Before the AMGPP was introduced, local Aboriginal community members were concerned that some women were presenting late in pregnancy or giving birth at KEMH irrespective of their risk status. The AMGPP aimed to improve timely access to existing antenatal and maternity services in south metropolitan Perth, and to thereby increase the number of women giving birth safely in a local hospital. The program employed Aboriginal Health Officers (AHOs), Aboriginal grandmothers and midwives in each district to work with the existing services. The program model was culturally secure, with a focus on early access to antenatal care, employment of Aboriginal staff, and holistic care, including awareness of the social determinants of health (Box 1). Clients with low-risk pregnancies gave birth at the local district hospital, and higher-risk pregnancies were referred to KEMH, as per the standard SMHS policy.

Our study aimed to explore any differences in neonatal health outcomes that were associated with AMGPP participation.

Methods

Study design

The study was a non-randomised intervention, with the intervention defined as participation in the AMGPP. The intervention group consisted of all Aboriginal women who gave birth while participating in the AMGPP between 1 July 2011 and 31 December 2012. These women received standard antenatal care and the additional services provided by the AMGPP (Box 1). The intervention group was compared with two control groups that were frequency matched on the basis of maternal age at the time of delivery (younger than 20 years or at least 20 years old) and gravidity (primigravida or multigravida). The historical control group consisted of Aboriginal women who resided in the SMHS and had given birth between 1 January 2009 and 30 June 2011; the contemporary control group consisted of Aboriginal women who resided in the NMHS and had given birth between 1 June 2011 and 31 December 2012. Women in the control groups were eligible to receive standard antenatal care. The outcome measures of the study were preterm delivery, low birthweight, neonatal resuscitation at birth, and the baby’s hospital length of stay (LOS).

Data sources

Data from the WA Midwives Notification System (MNS) was analysed. The MNS is a statutory database that records all births in WA occurring at a gestational age of at least 20 weeks, or where the birthweight is at least 400 g. The available data included maternal demographics, pre-existing medical conditions, smoking status, pregnancy complications and neonatal characteristics. Pregnancy complications included threatened miscarriage before 20 weeks, threatened preterm labour, urinary tract infection, pre-eclampsia, antepartum haemorrhage (placenta praevia, placental abruption, and other), pre-labour rupture of membranes, gestational diabetes, and “other”. Pre-existing medical conditions included asthma, diabetes, genital herpes, chronic hypertension, and “other”. Gestational age at the first antenatal visit was the only antenatal care variable recorded by the MNS, and this information was recorded only from January 2010. As the MNS does not identify AMGPP clients, midwives from each of the districts provided client lists directly to the Data Linkage Branch of the WA Department of Health for linkage to the relevant MNS record; in this manner, all but one AMGPP client could be identified.

Index of Relative Socioeconomic Disadvantage (IRSD) scores, one of the Australian Bureau of Statistics’ Socio-Economic Indexes for Areas (SEIFA), are routinely linked with MNS records using geocodes based on the latitude and longitude of the client’s address. In our study, population-level socioeconomic status was determined by the IRSD reported in the 2006 census at the collection district level (about 225 households), the smallest geographic unit of analysis available for the 2006 census.5 The IRSD was reported in quintiles that compared the raw score with other IRSD scores in WA, with the first quintile including the most disadvantaged 20% of collection districts in WA.

Services provided by AMGPP staff were reported biannually as part of Closing the Gap IECD2 funding requirements. However, reporting practices varied across the five program districts and during the course of the study, so that program service data must be interpreted with caution.

Data analysis

Baseline demographic, pre-existing medical and pregnancy characteristics for the intervention group were compared with those for each of the control groups. Health outcomes for the intervention group were compared with each control group, and reported as proportions and adjusted odds ratios (aORs). aORs with 95% confidence intervals were calculated using binomial logistic regression for the four dependent binary variables: birth before 37 weeks (preterm delivery, yes/no), birthweight under 2500 g (yes/no), neonatal resuscitation (yes/no), and baby LOS (>5 days or ≥5 days). Covariates included in the regression models were: the continuous variable, maternal age; the two categorical variables, IRSD quintile and parity (nulliparous, 1–4, or more than 4 previous pregnancies of at least 20 weeks’ gestation); and the five binary variables, previous caesarean delivery, caesarean delivery this pregnancy, one or more pregnancy complications, one or more pre-existing medical conditions and smoking during pregnancy. Covariates were retained in the final models only if they were independently associated with the neonatal outcome of interest.

Comparisons were made using Pearson or linear-by-linear χ² analyses (categorical variables) or Mann–Whitney U tests (continuous variables), with P < 0.05 defined as statistically significant.

Ethics approvals

Ethics approvals were obtained from the WA Aboriginal Health Ethics Committee (reference 493) and the SMHS Human Research Ethics Committee (reference 13/53). The WA Department of Health Human Research Ethics Committee provided approval for linkage to and analysis of statutory data (reference 2013/76).

Results

During the study period, there were 350 pregnancies and 353 babies born to 343 women in the AMGPP participant group, representing 58.2% of all pregnancies (350 of 601) and 66.0% of teenage pregnancies (99 of 150) in locally resident Aboriginal women. There were 350 pregnancies and 353 babies born in each of the two control groups.

Program participants

The mean age of AMGPP participants was 23.8 years, and 52.5% of the women resided in areas included in the most disadvantaged IRSD quintile (Box 2). Almost half of the women (44.6%) smoked during pregnancy. The most commonly recorded pre-existing medical conditions were “other” and asthma, occurring in 51.4% (180 of 350) and 13.1% (46 of 350) of pregnancies, respectively. The most common pregnancy complications were “other” and urinary tract infection, occurring in 14.9% (52 of 350) and 8.3% (29 of 350) of pregnancies, respectively.

Baseline characteristics

There were no significant differences between the AMGPP participant group and the control groups with respect to age, smoking status, parity or gravidity, body mass index (where data available), or multiple pregnancy (Box 2; multiple pregnancy data are not reported here because of MNS data-sharing agreement restrictions on the disclosure of data related to small numbers of individuals). Women in the contemporary control group were significantly less likely to reside in areas in the most disadvantaged IRSD quintile (χ² = 6.31, P = 0.01). Women in the historical control group were significantly less likely to have a pre-existing medical condition (χ² = 10.57, P = 0.001), although no significant differences were evident if the “other” diagnosis category was excluded from the analysis (AMGPP group, 50 of 350 (14.3%) v historical controls, 50 of 350 (14.3%): χ² = 0, P = 1.00; v contemporary controls, 58 of 350 (16.6%): χ² = 0.70, P = 0.40). The AMGPP participants were significantly less likely to have had a previous caesarean delivery (v historical controls, χ² = 6.29, P = 0.01; v contemporary controls, χ² = 9.76, P = 0.002).

Antenatal care and other services

Without adjusting for missing data, there were no significant differences in the proportions of women for whom an antenatal visit in the first trimester was recorded (AMGPP group, 102 of 337 (30.3%) v historical controls, 50 of 161 (31.1%): χ² = 0.03, P = 0.86; v contemporary controls, 84 of 341 (24.6%): χ² = 2.71, P = 0.10). For the AMGPP group, in addition to clinic-based antenatal visits, there were 294 outreach services by the AHO or an Aboriginal grandmother, with or without the midwife, during the study period. Individual brief smoking and alcohol interventions were delivered on 484 and 463 occasions, respectively. Program staff delivered a total of 62 antenatal education workshops, 1191 individual antenatal education services and 1155 individual sexual health education services.

Neonatal outcomes

The proportion of preterm births to AMGPP participants was significantly lower than in the two control groups (Box 3), and the program was associated with a significantly lower aOR for preterm birth (Box 4). Birthweight was correlated with gestational age (r_s = 0.53, P < 0.001), but significant differences between the groups in the proportions of low-birthweight babies were not found. The likelihood of neonatal resuscitation at birth or of having a hospital LOS of more than 5 days were significantly lower for babies of AMGPP participants (Box 4). There were significant differences between groups in the distribution of baby LOS (for the AMGPP, historical control and contemporary control groups, the respective means were 2.37 days, 3.01 days and 4.17 days; AMGPP v historical controls P = 0.002; v contemporary controls P < 0.001). The majority of AMGPP babies requiring a LOS of more than 5 days were born preterm (11 of 14 = 79%).

Discussion

Our study identified more favourable health outcomes for the babies of AMGPP participants than for babies of mothers in matched control groups, including significant reductions in the likelihood of preterm birth, neonatal resuscitation and a hospital LOS of more than 5 days. Notably, the proportion of preterm births to women in the program (9.1%) was similar to that reported for all births in WA during 2011 (8.6%, 2755 preterm births),4 and lower than that for all births to Aboriginal women in the SMHS area (15.6%, 56 preterm births)6 and in all of WA (14.4%, 251 preterm births).4

During 2008–2010, spontaneous preterm delivery was the most frequent contributor to Aboriginal neonatal mortality in WA (14 deaths in the first 28 days of life, 37.8% of neonatal deaths) and the second most frequent contributor to Aboriginal infant mortality (17 deaths during the first year of life, 27.9% of infant deaths).7 Premature birth, regardless of birthweight, has been associated with hypertension and insulin resistance in Aboriginal children.8 Reducing the likelihood of preterm birth is therefore likely to have long-term health benefits. Antenatal programs similar to the AMGPP in other states have found statistically significant reductions in the proportions of preterm births, but not of low-birthweight babies.9,10 In our study, having one or more pregnancy complications (both control groups) and smoking during pregnancy (comparison with contemporary control group only) were also independent predictors of a preterm birth.

Extended LOS can reflect complications for the mother, the baby or for both.11 WA data show that gestational age is a better predictor of neonatal LOS than birthweight.4 The LOS for AMGPP participants was significantly lower than in either control group, with potential impacts on hospital costs. The majority of AMGPP participants with a LOS greater than 5 days had delivered preterm babies (79%).

A significant proportion (58.2%) of locally resident Aboriginal women and an even greater proportion of Aboriginal teenagers (66.0%) who gave birth during the study period participated in the AMGPP. In 2008, 53.1% of locally residing Aboriginal women (179 women) gave birth at KEMH, compared with 36.8% (148 women) in 2013, with a commensurate increase in the proportion of pregnant Aboriginal women giving birth locally.6 Moreover, the proportion of local women participating in the AMGPP continued to grow in 2014–2015 (data not shown).

In 2011, birth rates were six times higher for WA Aboriginal teenagers than for non-Aboriginal teenagers.4 Compared with adult women, teenagers are more likely to experience complications during pregnancy, such as urinary tract infections and hypertension, and their babies are more likely to be of low birthweight or stillborn.12 Improving antenatal care uptake in this demographic was a major objective of the IECD2 program, and the AMGPP appeared to reach this risk group.

There were limited data in the MNS on the provision of antenatal care during the study period.13 However, separate qualitative data collected as part of an evaluation of the program have shown the positive impact of the Aboriginal staff on ensuring early and continued engagement of pregnant women with the AMGPP.13 Further, the 6-monthly district reports provided data about the outreach services, brief interventions and antenatal education delivered by the program staff.

Selection bias was potentially a limitation of the study design,14 as women presenting for care possibly had different risk profiles to those who did not. In this study, the risk of selection bias was reduced (although not eliminated) by the involvement of the Aboriginal grandmothers, who brought women into the program through their community networks.13 Almost two-thirds of teenage pregnancies were managed by the AMGPP, suggesting that high-risk females were making use of antenatal health care. In addition, no significant differences between AMGPP participants and controls were detected with respect to maternal age, body mass index (when data were available), smoking status, parity or multiple pregnancy. In fact, some baseline characteristics of the contemporary control group suggested that it was a lower-risk group than the AMGPP participants; a greater proportion of the contemporary control group lived in socioeconomically less disadvantaged areas and this group included a lower proportion of grand multiparas. However, it is possible that the groups differed in ways that could not be quantified with the MNS data, such as the frequency of substance misuse. Further, the nature of the program, with AMGPP staff working alongside various hospital- and community-based antenatal services, meant that complete data on antenatal care provision were not always available, and this limits the conclusions that can be made about the direct effect of AMGPP participation on neonatal outcomes.

The AMGPP endeavoured to deliver culturally competent and holistic antenatal care services for Aboriginal women in the south metropolitan region of Perth, and babies born to participants were at lower risk for several adverse health outcomes, including preterm birth. Given the association between preterm birth and infant mortality, as well as the impact of prematurity on chronic disease throughout life, programs providing access to culturally secure antenatal care for Aboriginal women may have long-term benefits for their children. The AMGPP enhanced existing maternal health services and enabled more Aboriginal women to give birth locally and safely. This model of care could be adapted for use in similar settings with the support of local Aboriginal communities.

1
Features of the Aboriginal Maternity Group Practice Program (AMGPP) in the South Metropolitan Health Service (SMHS), Perth, Western Australia

All aspects of program planning, implementation and progression were guided by Aboriginal community members through district steering group meetings. These meetings were held quarterly, and were also attended by AMGPP staff, South Metropolitan Population Health Unit (SMPHU) contract management staff, maternity ward staff from each local district hospital and antenatal care providers.
The Aboriginal Health Officer (AHO) was required to have the Certificate IV in Primary Health Care (or equivalent) as a condition of employment, and provided care coordination, including referrals to other health and social services providers.
The Aboriginal grandmothers were respected women in the local community with good community networks. They identified pregnant women, assisted with access to services (including transport), provided support (including being present at appointments, if requested), and advised on cultural and health promotion matters.
The AMGPP midwife delivered antenatal care in partnership with local antenatal care providers. Clinical staff provided clinical governance, working within existing hospital guidelines.
Women were referred to the program by AMGPP staff, community members, general practitioners, hospital antenatal clinics, Medicare Locals and social services providers.
A home-visiting service was available. Outreach clinics were provided in various locations, including women’s refuges, Aboriginal community centres and mobile GP services.
Aboriginal staff were trained to deliver culturally appropriate, brief interventions to assist with stopping smoking and alcohol use. Training was provided by the Drug and Alcohol Office (Strong Spirit, Strong Future), the Cancer Council WA (Fresh Start) and the SMPHU (Yarning It Up).
The AMGPP staff delivered antenatal and sexual health education on an individual basis. Antenatal education included information about the stages of pregnancy, managing problems occurring during pregnancy, healthy lifestyle behaviours (nutrition; stopping smoking and alcohol use), mental health, available services, birth registration, breastfeeding, baby care, and the prevention of sudden infant death syndrome. Sexual health education included information about the symptoms of sexually transmitted infections, the importance of Pap smears, and contraception. Aboriginal staff received training in health promotion from the Aboriginal Maternal Services Support Unit (WA Department of Health).

2
Characteristics of Aboriginal Maternity Group Practice Program (AMGPP) participants and mothers in the two control groups

Characteristic

AMGPP participant group (350 pregnancies)

Historical control group (350 pregnancies)

Contemporary control group (350 pregnancies)

Maternal age, years (mean, range)

23.8 (15–44)

23.5 (14–42)

24.2 (13–44)

Gravidity (primigravida)

99 (28.3%)

Parity

0 (nulliparous)

132 (37.7%)

127 (36.3%)

125 (35.7%)

1–4 births (multiparous)

188 (53.7%)

192 (54.9%)

209 (59.7%)

5 or more births (grand multiparous)

30 (8.6%)

31 (8.9%)

16 (4.6%)

Index of Relative Socioeconomic Disadvantage (IRSD) quintile

1st (most disadvantaged 20%)

179/341 (52.5%)

174/330 (52.7%)

150/339 (44.2%)^*

2nd

85/341 (24.9%)

94/330 (28.5%)

87/339 (25.7%)^*

3rd

43/341 (12.6%)

33/330 (10.0%)

49/339 (14.5%)^*

4th

21/341 (6.2%)

18/330 (5.5%)

37/339 (10.9%)^*

5th (least disadvantaged 20%)

13/341 (3.8%)

11/330 (3.3%)

16/339 (4.7%)^*

Body mass index

Underweight (< 18.5 kg/m²)

15/298 (5.0%)

4/136 (2.9%)

Normal weight (18.5–24.9 kg/m²)

122/298 (40.9%)

64/136 (47.1%)

Overweight (25–29.9 kg/m²)

72/298 (24.2%)

26/136 (19.1%)

Obese (= 30 kg/m²)

89/298 (29.9%)

42/136 (30.9%)

Smoking status

156 (44.6%)

163/349 (46.7%)

160 (45.7%)

One or more pre-existing medical conditions

201 (57.4%)

158 (45.1%)^*

185 (52.9%)

One or more complications during pregnancy

105 (30.0%)

127 (36.3%)

119 (34.0%)

Labour onset

Spontaneous

248 (70.9%)

246 (70.3%)

212 (60.6%)^†

Induced

77 (22.0%)

69 (19.7%)

90 (25.7%)^†

No labour

25 (7.1%)

35 (10.0%)

48 (13.7%)^†

Previous caesarean delivery

29 (8.3%)

50 (14.3%)^*

56 (16.0%)^*

Caesarean delivery this pregnancy

Elective caesarean delivery

20 (5.7%)

27 (7.7%)

40 (11.4%)^*

Non-elective caesarean delivery

46 (13.1%)

61 (17.4%)

na = not available. The denominator for the calculations is included where data for a variable were incomplete. *P < 0.05, †P < 0.001, each compared with AMGPP group.

3
Health outcomes for the babies of Aboriginal Maternity Group Practice Program (AMGPP) participants and of mothers in the two control groups

Health outcome

AMGPP participants (353 babies)

Historical control group (353 babies)

Contemporary control group (353 babies)

Preterm birth (< 37 weeks)

32 (9.1%)

56 (15.9%)^*

54 (15.3%)^*

Low birthweight (< 2500 g)

38 (10.8%)

51 (14.4%)

56 (15.9%)

Requiring resuscitation at birth

63 (17.8%)

86 (24.4%)^*

110 (31.2%)^†

Baby length of stay > 5 days

14 (4.0%)

40 (11.3%)^†

41 (11.6%)^†

*P < 0.05, †P < 0.001, each compared with the AMGPP group.

4
Multivariate models of neonatal health outcomes for Aboriginal Maternity Group Practice Program (AMGPP) participants compared with mothers in the two control groups

Health outcome

Historical control group

Contemporary control group

Predictive factor

aOR (95% CI)

Preterm birth

AMGPP

0.56 (0.35–0.92)

0.02

0.75 (0.58–0.95)

0.02

Pregnancy complications

6.24 (3.79–10.25)

< 0.001

3.69 (2.29–5.93)

< 0.001

Smoking

2.95 (1.79–4.84)

< 0.001

Low birthweight

AMGPP

0.79 (0.49–1.30)

0.36

0.83 (0.66–1.07)

0.14

Pregnancy complications

8.41 (4.95–14.27)

< 0.001

5.70 (3.52–9.23)

< 0.001

Smoking

2.94 (1.77–4.87)

< 0.001

3.33 (2.03–5.47)

< 0.001

Previous caesarean delivery

2.05 (1.10–3.81)

0.02

Requiring resuscitation at birth

AMGPP

0.68 (0.47–0.98)

0.04

0.71 (0.60-0.85)

< 0.001

Caesarean delivery this pregnancy

2.06 (1.36–3.12)

< 0.001

2.12 (1.45-3.10)

< 0.001

Baby length of stay > 5 days

AMGPP

0.34 (0.18–0.64)

0.001

0.56 (0.41–0.77)

< 0.001

Pregnancy complications

2.53 (1.44–4.47)

0.001

2.79 (1.58–4.93)

< 0.001

Smoking

2.38 (1.32–4.30)

0.004

aOR = adjusted odds ratio. *Not significant, and therefore not included in the final models for the comparison with the historical control group.

Rheumatic heart disease in Indigenous children in northern Australia: differences in prevalence and the challenges of screening

Indigenous Australians (Aboriginal Australians and/or Torres Strait Islander peoples) suffer high rates of acute rheumatic fever (ARF) and its sequel, rheumatic heart disease (RHD).1,2 Estimates of RHD prevalence have relied on register data collected for clinical purposes or on intermittent enhanced surveillance projects,3 and have suggested that 1%–2% of Indigenous Australians living in northern and central Australia have RHD.

Screening for RHD provides an opportunity to accurately define the current disease burden, as well as to identify children with undiagnosed disease who may benefit from early treatment. A number of studies have shown that cardiac auscultation lacks the sensitivity and specificity required for screening for RHD and should no longer be used for this purpose.4–6 Portable echocardiography has emerged as a more valuable tool, and its usefulness was enhanced by the publication of the World Heart Federation (WHF) criteria for the echocardiographic diagnosis of RHD in 2012 (Box 1).7

We recently published the results of an echocardiographic screening study of more than 5000 school-aged children, including nearly 4000 Indigenous children living in four regions of northern and central Australia.8 We used the WHF criteria to compare the echocardiographic findings of children at high and low risk of RHD (as defined by the RHD Australia guidelines9). We found that the overall prevalence of definite RHD in high-risk Indigenous children (8.6 per 1000) was comparable with previous register-based estimates from the Northern Territory. Definite RHD was not identified in any low-risk non-Indigenous children.

This study is methodologically the most rigorous exploration of echocardiographic screening yet conducted, and the first cross-sectional survey of the prevalence of RHD in Australia. However, we did not report the data in sufficient detail to maximise its relevance for local RHD control in Australia. In this article, we describe the prevalence of definite and borderline RHD in Indigenous children from the Top End of the NT, Central Australia, Far North Queensland (FNQ), including the Torres Strait, and the Kimberley region of Western Australia. By comparing the findings in different regions and describing some of the challenges of the screening process, we aim to inform decision making about the potential impact and usefulness of echocardiographic screening for RHD in different Australian regions.

Methods

Design, setting and participants

The study design and population and the sample size calculation have been described previously.8 Briefly, we performed screening echocardiograms on 3946 Indigenous children aged 5–15 years living in remote communities in northern Australia. Thirty-two communities were selected from four geographical regions (Box 2). Children were identified by the enrolment records of participating schools and were recruited at school or by approaching their families. Written informed consent was obtained from parents or guardians, and written consent was also obtained from children who were at least 13 years old.

The study was conducted from September 2008 to November 2010. Ethics approval was obtained from the Human Research Ethics Committee of the Northern Territory Department of Health and Community Services, the Central Australian Human Research Ethics Committee, the Cairns and Hinterland Health Service District Human Research Ethics Committee, the James Cook University Human Ethics Committee, the University of Western Australia Human Research Ethics Committee, and the Western Australian Aboriginal Health Information and Ethics Committee.

Echocardiography protocol, reporting and definitions

Screening echocardiograms were performed by cardiac sonographers according to an abbreviated protocol that focused on the mitral and aortic valves. Sonographers were provided with a list of features that prompted a more detailed, comprehensive echocardiogram, also performed at the time of screening, if required. Screening echocardiograms were recorded to DVD and reported offsite by a pool of 14 cardiologists according to our standardised electronic protocol. These data were used post hoc to determine whether children met the WHF definitions of definite or borderline RHD.

Clinical follow-up

Separate to reporting for research purposes, all comprehensive echocardiograms were sent to a local cardiologist to guide clinical management of the participant. The cardiologist provided a written report that included the echocardiographic findings and recommendations for follow-up, including secondary prophylaxis. Reports were sent to the primary health care team, who used existing clinical services to coordinate the necessary referrals.

Socioeconomic comparisons

We explored whether differences in RHD prevalence between regions could be attributed to socioeconomic or demographic factors. No information about socioeconomic factors was collected from individual participants. Instead, we used publicly available statistics to compare the socioeconomic characteristics of the participating schools and communities. Information about school attendance and the Indigenous status of enrolled students, as well as Index of Community Socio-Educational Advantage (ICSEA10) scores were obtained for each participating school from the Australian Government’s MySchool website.11 The ICSEA is a measure of the educational advantage of the students enrolled at a particular school, based on information about each student’s family background (including parental occupation and level of education). The median value of the scale is 1000 with an SD of 100.

Information about household crowding and Socio-Economic Indexes for Areas (SEIFA12) scores were obtained for each participating community from the Australian Bureau of Statistics 2011 census data.13 Two SEIFA scores were analysed: the Index of Relative Social Disadvantage (IRSD) and the Index of Relative Social Advantage and Disadvantage (IRSAD). These indices summarise socioeconomic information about the people and households in a geographical area, and scales are standardised with a mean value of 1000 and an SD of 100.

ICSEA, IRSD and IRSAD scores were assigned to individuals according to their school or community and to calculate aggregate scores for each of the four study regions.

Statistical analysis

Statistical analysis was performed with the Stata statistical package (version 12.1; StataCorp). Descriptive data are presented as medians and interquartile range (IQR) for non-normally distributed variables. Medians were compared with the Mann–Whitney U test (for two groups) or the Kruskal–Wallis test (for more than two groups). Categorical variables were compared with the χ² test. RHD prevalence (with 95% CIs) was calculated for the entire study sample and for each of the four regions. Multivariate logistic regression was used to compare the proportion of children with RHD in each region. Socioeconomic variables were compared by means of ANOVA (IRSAD, IRSD and ICSEA) or Kruskal–Wallis and Mann–Whitney U tests (household crowding).

Results

The demographic characteristics of the 3946 remote Indigenous children who had a screening echocardiogram are presented in Box 3. Forty-one per cent of the FNQ participants were identified as Torres Strait Islanders or Aboriginal and Torres Strait Islanders, whereas more than 99% of the other groups were identified as Aboriginal only.

Despite the similar age and sex distribution of all four groups, children from the Top End of the NT had a significantly lower median body weight and body mass index than children from the other three regions (compared with Central Australia and FNQ, P < 0.001; with the Kimberley, P = 0.004; Box 3).

Of the 569 comprehensive echocardiograms performed (13.3% of children screened), significantly more were undertaken in FNQ (17.2%) than in other jurisdictions (P < 0.001 compared with the Kimberley, P < 0.001; with Central Australia, P = 0.002; with the Top End, P = 0.26; Box 3). In the FNQ group, more Torres Strait Islander children (20.4%) required a comprehensive echocardiogram than did non-Torres Strait Islander children (14.9%, P < 0.001).

Prevalence of RHD based on the WHF criteria

The prevalence of definite and borderline RHD in each region is presented in Box 4. The prevalence of definite RHD was higher in Top End children than in children from the three other jurisdictions combined (odds ratio [OR], 2.3; 95% CI, 1.2–4.6, P = 0.01). This difference was not observed in the borderline RHD category.

We have previously reported that 18 of the 34 children (52.9%) who met the criteria for definite RHD were new cases (no previous history of ARF or RHD);8 the majority (93.9%) of children meeting the criteria for borderline RHD were also new cases. The prevalence of previously undiagnosed definite RHD detected in the entire study sample by screening was 4.6 per 1000 (95% CI, 2.7–7.2); for the Top End, the prevalence of new cases of definite RHD was 7.0 per 1000 (95% CI, 2.8–14.4).

Comparison of the socioeconomic profiles of the four regions

Thirty-eight schools from 32 communities participated in the screening study. Mean and median ICSEA, IRSD and IRSAD scores for each region are presented in Box 5. The Top End communities had significantly lower mean ICSEA, IRSD and IRSAD scores (ANOVA), and significantly higher levels of household crowding (Kruskal–Wallis, Mann–Whitney U tests) than the other regions (P < 0.05 for all comparisons; Top End versus other regions combined or individually). Top End schools also had significantly lower median ICSEA scores than the other regions combined and than each of Central Australia and FNQ (for each comparison, P < 0.001), but not when compared with Kimberley schools (P = 0.43).

Discussion

This is the first prospective screening survey for RHD in Indigenous Australian children, and the first study to provide reliable information about the epidemiology of RHD in children from FNQ and the Kimberley region of Western Australia. Our previous report confirmed that the prevalence of RHD is high in Indigenous children, and that the overall prevalence of definite RHD in school-aged children (8.6 per 1000) is comparable with figures from developing countries.14–18 Although this figure is similar to previous estimates of the prevalence of RHD in the NT,1,2,19 there are important differences between the four regions when examined individually.

The most striking difference is the higher prevalence of definite RHD in children from the Top End of the NT. The prevalence of 15.0 per 1000 is two to three times higher than in other regions, and nearly triple the previously published estimates of RHD prevalence in Top End children (5.8 per 100020). Two more recent audits of the NT register have been undertaken, but only the combined data from the Top End and Central Australia have been published,1,19 reporting an RHD prevalence of 8.5 per 1000 in Indigenous children aged 5–14 years in the NT. Our study suggests that this significantly underestimates the burden of disease in the Top End, and that disease epidemiology may be different in the Top End and Central Australia.

This difference has not previously been reported, and reasons for a higher disease burden in the Top End are not clear. However, some features of our study sample may be relevant. We noted that the growth parameters of Top End children were significantly lower than those of children in the other regions, and that the participating Top End communities had the highest number of people per household, a mean of 6.3 persons, compared with the Australian average of 2.6 persons per household.12 In addition, the ICSEA, ISRD and IRSAD scores were also lowest in our Top End sample, between three and five SDs below the Australian average. It was striking how far below the Australian mean these scores were in all regions, highlighting the extreme disadvantage experienced in remote Aboriginal communities. We attempted to quantify the relationship between definite RHD and the four socioeconomic measures by logistic regression, but the small number of cases of definite RHD prevented this.

These observations suggest that the participating communities from the Top End were the most disadvantaged of the remote Indigenous communities we surveyed. Given that poverty-related factors, such as overcrowded housing, are known to be significant risk factors for ARF and RHD,21–23 extreme disadvantage would provide a plausible explanation for the higher prevalence of RHD in the Top End. Other possibilities include inherent differences in host susceptibility or in circulating strains of group A Streptococcus (GAS), but data are not available for the four sampled regions to explore these hypotheses. One NT study that investigated the diversity of GAS strains in the NT did not find “NT-endemic” strains, and the authors concluded that the high burden of GAS disease was more probably related to poor living conditions than to bacterial factors.24

Selection bias may also contribute to the observed differences in RHD prevalence. Given the logistical challenges of surveying a large number of Indigenous children in remote areas, we were unable to select communities at random. We instead carefully selected communities of different sizes and from different areas in the same geographic region to provide as broad a sample as possible (Box 2).

Only about 50% of school-enrolled children were screened in our study (although the percentages in Box 5 are slight underestimates, because the school enrolment record includes children of all ages, some of whom were not eligible for our study). Given that the average daily attendance in participating schools was 69%, this result is understandable, and indicates our efforts to maximise recruitment.

Whether the children we screened were representative of all children in the participating communities is an important question. We were unable to collect information about children who had not consented to the study, but Box 3 shows that there were no differences in the sex or age distributions of the samples from each region. It is probable that these figures (equal sex and normal age distributions) are representative of the communities as a whole, and that selection bias is unlikely to explain the observed differences in RHD prevalence.

However, selection bias may have resulted in an overall underestimation of RHD prevalence. A school-based approach to screening is practical, but potentially excludes those most at risk of disease, such as children who are too sick to attend school, or who live in the most marginalised families. This may have resulted in underestimation of the full burden of RHD in remote Indigenous communities.

The number of new cases detected is a crucial element in evaluating the usefulness of any screening program. More than half of the children meeting the criteria for definite RHD were new cases (Box 4), with an overall prevalence of 4.6 new cases per 1000 children screened. This figure was substantially higher in the Top End cohort, and our results suggest that for every 1000 Top End children screened, 7 new cases of definite RHD would be detected, equivalent to about 50 new cases in this population. This information is critical for evaluating the cost-effectiveness of screening, and we are currently analysing the data.

We encountered a number of practical difficulties that have implications for future echocardiographic screening in remote Australia. The logistical challenges of travel to remote communities are clear; travel by road is slow and sometimes impossible, and travel by plane is expensive, requiring chartered flights to isolated areas not served by commercial flights. After staff had arrived in the communities, the biggest challenge was finding and obtaining consent from the children to be screened, as school attendance was poor. We tried to include absentees by extending our screening activities beyond the school grounds, which was time-consuming and inefficient.

The most significant challenges faced by this study related to clinical follow-up and communication with families and health care providers. A total of 569 children (14.4%, Box 3) had comprehensive echocardiograms that required timely review by an offsite cardiologist to guide clinical management. This considerably increased the workload of local cardiologists, and it frequently took weeks to months for reports to be completed. Once available, the reports themselves often generated confusion and frustration for health care providers, as illustrated by a qualitative survey of health care providers in three participating screening sites.25 The WHF diagnostic criteria had not yet been published when our study commenced, so there was uncertainty about the significance of minor echocardiographic changes in an otherwise healthy child. This resulted in many paediatric cardiology referrals, which often challenged the capacity of local services.25 If echocardiographic screening is to become feasible as a routine approach, a technical aspect that must be refined is thus to reduce the number of comprehensive echocardiograms that require review by a cardiologist. Ensuring that health systems are equipped to deal with the additional increase in case numbers is vital before initiating routine screening activity.26

The impact of screening on the families of 68 children in our study was explored by Wark and colleagues with a Quality of Life (QOL) questionnaire.25 Although there was no difference in the overall QOL summary scores, carers of children with possibly abnormal echocardiograms had poorer QOL scores in subscales pertaining to general health perception and parental emotional impact. In contrast, a study by a New Zealand group27 surveyed 114 families who had participated in a more recent school-based echocardiographic screening program, and found unanimous support for the program. The authors concluded that the screening process had no negative effects, nor were there short-term adverse effects in the families of children with abnormal results, in terms of either health perception or of parental anxiety.

The timing of the two studies and methodological differences may explain these contrasting findings. In the New Zealand study, screening and reporting occurred within a much shorter time period, and clinical follow-up was performed by clinicians who were directly involved in the research process. In addition, the WHF criteria had been published before the study commenced, reducing diagnostic uncertainty regarding the significance of minor echocardiographic abnormalities and facilitating appropriate clinical follow-up.

In summary, our study identified a previously unrecognised difference in the prevalence of RHD in four remote regions of northern Australia. The prevalence of definite RHD in Top End children was nearly twice as high as that in the other three regions, and this may be related to socioeconomic factors. We estimate that 4–8 per 1000 Indigenous children in remote communities have undetected RHD that could be identified by echocardiographic screening. Whether such screening should be recommended will require further and careful consideration of its cost-effectiveness, feasibility, sustainability and impact on primary and specialist health care services. We are currently preparing a cost-effectiveness analysis that will allow us to make informed recommendations regarding RHD screening to national policymakers.

1
Echocardiographic criteria for rheumatic heart disease (RHD) in individuals aged ≤ 20 years

Definite RHD (one of the following features):

Pathological mitral regurgitation and at least two morphological features of RHD of the mitral valve;
Mitral stenosis mean gradient ≥ 4 mm Hg;^∗
Pathological aortic regurgitation and at least two morphological features of RHD of the aortic valve;^†
Borderline disease of both the aortic valve and mitral valve.^†

Borderline RHD (one of the following features):

At least two morphological features of RHD of the mitral valve without pathological mitral regurgitation or mitral stenosis;
Pathological mitral regurgitation;
Pathological aortic regurgitation.

∗Congenital mitral valve anomalies must be excluded.

^†Bicuspid aortic valve, dilated aortic root and hypertension must be excluded.

^†Combined aortic and mitral regurgitation in high prevalence regions and in the absence of congenital heart disease is regarded as rheumatic. The four Doppler echocardiographic criteria for pathological mitral regurgitation are that it be seen in two views; in at least one view, jet length ≥ 2 cm; velocity ≥ 3 m/s for one complete envelope; and pan-systolic jet in at least one envelope. The criteria for pathological aortic regurgitation are that it be seen in two views; in at least one view, jet length ≥ 1 cm; velocity ≥ 3 m/s in early diastole; and pan-diastolic jet in at least one envelope). Adapted from Reményi et al.7

2
Northern Australian sites where echocardiographic screening for rheumatic heart disease was undertaken for this study

3
Demographic characteristics of Indigenous children screened for rheumatic heart disease

Characteristic

Top End (n = 1000)

Central Australia (n = 895)

Far North Queensland (n = 1265)

Kimberley (n = 786)

Number (%)

Sex

Male

497 (49.7%)

479 (53.5%)

641 (50.7%)

389 (49.5%)

0.30∗

Female

503 (50.3%)

416 (46.5%)

624 (49.3%)

397 (50.5%)

Ethnicity

Aboriginal

998 (99.8%)

892 (99.7%)

746 (59.0%)

786 (100.0%)

Torres Strait Islander

2 (0.2%)

303 (24.0%)

< 0.001∗

Aboriginal and Torres Strait Islander

1 (0.1%)

216 (17.1%)

Comprehensive echocardiogram performed, n (%)

153 (15.3%)

111 (12.4%)

217 (17.2%)

88 (11.2%)

< 0.001∗

Median (interquartile range)

Age (years)

9.4 (7.4–11.6)

9.3 (7.3–11.3)

9.2 (7.2–11.2)

9.3 (7.3–11.5)

0.15^†

Weight (kg)

26.5 (21.1–35.5)

29.8 (22.9–40.8)

28.5 (21.8–39.5)

27.4 (21.7–39.0)

< 0.001^†

Height (cm)

133.0 (121.9–147.0)

135.0 (123.0–149.0)

133.4 (120.1–145.8)

133.0 (121.4–148.2)

0.01^†

BMI (kg/m²)

15.1 (14.0–16.6)

16.2 (14.9–18.9)

16.2 (14.7–19.0)

15.7 (14.4–17.9)

< 0.001^†

BMI = body mass index.
∗χ² test;^†Kruskal–Wallis test.

4
Cases of rheumatic heart disease (RHD) in Indigenous children from four remote regions of northern Australia

	Top End	Central Australia	Far North Queensland	Kimberley	Total	P (χ²)

Definite RHD
New cases	7	4	5	2	18
Known cases	8	2	1	5	16	0.06
Prevalence	15.0/1000	6.7/1000	4.7/1000	8.9/1000	8.6/1000
95% CI	8.4–24.6	2.5–14.5	1.7–10.2	3.6–18.2	6.0–12.0
Borderline RHD
New cases	17	14	23	8	62
Known cases	1	1	2	0	4	0.41
Prevalence	18.0/1000	16.8/1000	19.8/1000	10.2/1000	16.7/1000
95% CI	10.7–28.3	9.4–27.5	12.8–29.0	4.4–20.0	13.0–21.2
Total screened	1000	895	1265	786	3946

5
Comparison of the socioeconomic characteristics of the four screening regions

	Top End	Central Australia	Far North Queensland	Kimberley

Number of Indigenous children aged 5–14 years who were screened	1000	895	1265	786
Number of participating communities	7	10	7	8
Number of participating schools	7	14	8	9
Estimated number of Indigenous students enrolled in participating schools (all ages)∗	1765	1744	2635	1250
Estimated percentage of enrolled Indigenous students who were screened	56.7%	51.3%	48.0%	62.9%
Average school attendance in participating schools11	65.0%	68.0%	79.0%	67.0%
ICSEA score of participating schools11
Mean (SD)	576 (38)	643 (79)	622 (80)	583 (48)
Median (IQR)	569 (556–590)	631 (566–712)	587 (581–592)	567 (557–612)
IRSAD score of participating communities12
Mean (SD)	631 (67)	734 (96)^†	759 (180)	711 (28)
Median (IQR)	688 (580–690)	695 (655–831)	678 (644–913)	694 (694–758)
IRSD score of participating communities12
Mean (SD)	533 (104)	676 (122)^†	712 (224)	650 (33)
Median (IQR)	606 (443–641)	618 (570–795)	621 (585–903)	628 (628–704)
Number of people per household in participating communities12
Mean (SD)	6.3 (0.9)	4.8 (1.1)^†	4.5 (0.5)	4.8 (0.7)
Median (IQR)	6.8 (5.1–7.0)	5.0 (4.1–5.9)	4.2 (4.0–5.0)	4.6 (4.3–5.6)

ICSEA = Index of Community Socio-Educational advantage; IRSAD = Index of Relative Social Advantage and Disadvantage; IRSD = Index of Relative Social Disadvantage; IQR = interquartile range. ∗The estimated number of Indigenous students per participating school was calculated from the total school enrolment data (all ages) and the percentage of Indigenous students published on the MySchool website.11^†Alice Springs data excluded because the significant non-Indigenous residential population limits their usefulness.

The delicate balance between quantity and quality – a view on the increase in prevalence of mental illness in children and adolescents

Dr Helen Schultz is a psychiatrist and author of How Shrinks Think, her story of her journey through psychiatry training, and life beyond. If you work in healthcare and have a blog topic you would like to write for doctorportal, please get in touch.

It’s official. What we at the coal face see has been confirmed by a recent study, “Young Minds Matter” that concludes thousands of children and teenagers suffer from mental illness. And, as we know at the coal face, they largely suffer in silence.

What a sad state of affairs in a time when we know so much more about prevention and mental illness, what a tragedy for the next generation, what a social disaster. Continual erosion to the basics must play a part. Financial distress, the epidemic of drug and alcohol misuse, and the loss of the family structure due to poverty and violence. Incalculable factors, specific to some families but generalised as a whole.

In essence, we have lost our way when it comes to remembering that in fact the family is an integral protective structure for children’s mental health and resilience, and attempts to threaten this will inevitably be felt by the next generation.

As a psychiatrist, I have seen a large number of adolescents over the years, and I know in many cases the problems expressed within the child generate from their environment. When that environment consists of those whom the children fear they will suffer in silence rather than speak up. Children learn from a young age whether or not their parents or other adults can cope with their ‘stuff’.

In many cases children become parentified and learn to conceal their angst and be available for adult’s problems. They present later in life struggling to understand how to relate to others, unable to show kindness to themselves, or identify their purpose in life. And so the cycle continues.

This new study reports that 7% of Australia’s children and adolescents have anxiety to the point where it is a recognisable mental illness. One in 20 children have chosen a place to commit suicide. I am sure the rates are higher and there would be large spikes in incidence in sectors of society. I can’t imagine how prevalent anxiety disorders are for those children held in immigration detention centres. Or children with marked social disadvantage. Of course they don’t tell parents. Their parents are often emotionally and physically unavailable.

When I underwent child psychiatry training I learnt all about the child within a system. I still operate within this approach when I see my patients; that is to recognise the ‘big picture’ and try and provide interventions that address these other crucial factors, such as parental conflict or school place bullying. I learnt that this work takes time and takes a team. Often the child that presents is not the patient. They can be the harbinger for a family in crisis.

So why then the gross dismantling of multidisciplinary services? Why at a time when family structure is crumbling under the weight of societal forces are we allowing mental health services to crumble too? The federal health minister, Ms Sussan Ley stated that she sees the results from this recent study as positive in that children are coming forward to ask for help. Her press release stated

“It’s also a credit to young Australians, and society as a whole, that so many are not only bravely opening up about their emotions and behaviours, they’re actively seeking out help and taking positive actions to manage them”

A credit? A tragedy that they have to ask at all. And more importantly, who are they telling and what happens when they do so?

At the same time as this news is breaking, so are the warnings about an alarming rise in the use of antipsychotic and antidepressant medications in this same age group. In particular is the distressing trend for young adolescents and children to be commenced on major antipsychotic medications such as quetiapine for off-label indications such as insomnia.

Doctors are exposing children and adolescents to the harmful short and long term effects of antipsychotic medications, including weight gain, diabetes and potential cardiovascular disease without any evidence. Numerous reports identify this rise in prescribing of these agents has nothing to do with a rise in psychosis, but simply that such medications are seen as a benign broad brush stoke approach to any emotional distress and child could present with.

It is not just happening in psychiatry but in primary care. We will regret exposing our children and adolescents to these medications in the future, I am sure, but right now, it seems to be the only approach to mental illness and emotional distress in a society where most psychosocial services are no longer funded or regarded as valuable.

So yes, the quantity is there – we do need to remember that our children and adolescents are vulnerable and experience distress borne from a modern society and new stresses and strains – but we fall short from providing quality care. And I am sure we will reflect on this time as a failed opportunity to use our knowledge and wisdom, advocate for a better mental health system based on evidence, where children and adolescents can feel safe, and go on to lead the lives they deserve.

This blog was previously published on DrHelenSchultz.com and has been republished with permission. Dr Schultz is appearing at “The Power of Story” on Friday 4th September 2015 in Melbourne, alongside other health care radicals who are passionate about storytelling in health.

Other doctorportal blogs

Actual availability of general practice appointments for mildly ill children

There are concerns that there may be shortages in the Australian primary care workforce, especially in rural and regional areas. However, some have suggested that a shortage of general practitioners is also a problem in metropolitan areas.1 In some outer suburbs of Melbourne, residents have reported significant difficulty in acquiring a medical certificate for sick leave in a timely manner, and that waiting 2 weeks for a doctor’s appointment is common.2 Similarly, some GPs in Melbourne have reported having to close their books due to excessive demand, with one doctor stating he had to turn patients away for 2 years3. Even in some inner-city Melbourne practices, doctors have reported having to close their books, and hearing from patients that they have had to telephone four or five clinics just to obtain an appointment.4

An actual or perceived lack of availability of primary care appointments may contribute to the increased rates of attendances at hospital emergency departments (EDs), as patients seek alternative ways to reach health care providers. Attendances at EDs are increasing at a rate exceeding population growth, and there is a perception among hospital staff that a significant portion of attendances are for conditions that do not require the urgent or specialised services that such departments provide.5,6 While some ED visits are for serious acute conditions some of which result in hospitalisation, a large number could be treated in a primary care setting.6–8

Many hospital EDs are experiencing a severe strain on their limited resources, as evidenced by chronic overcrowding and long waiting periods.9,10 Thus, ensuring that primary care practitioners are sufficiently available and accessible in the community is essential for both individuals and the health system as a whole. This would help patients with urgent conditions receive more timely treatment in hospitals by reducing demand for ED services, while those who do not require emergency treatment would benefit from the continuity of care and preventive services available in the community.11

Understanding the true availability of the primary care workforce for the population is necessary to determine whether a shortage actually exists. Projected models of supply and demand for the primary care workforce do indicate a possible shortage of practitioners.12 However, beyond head counts of providers, there are few data that provide more than anecdotal reporting of primary care workforce supply and demand in Australia. For example, in 2009 the Australian Bureau of Statistics found that, in 1 year, about 937 800 people reported they had been unable to access health services when they needed them. Of the 82% who were attempting to access general practice services, 47% cited long waiting periods or a lack of available appointments as the main reason for lack of access.13 A study of an outer metropolitan region in Western Australia found that 59% of people had reported difficulty in obtaining GP appointments, citing lack of appointments, long waiting periods and inconvenient hours.14 Although indicative, such data are of limited use in assessing the actual availability and accessibility of services, given their focus on modelled data or on patient recall of health service access. No previous studies have provided a real-time assessment of GP availability or appointment charges from the patient’s perspective.

The lack of such data hinders adequate policy responses to ensure that the needs of the population are met. We undertook this study specifically to help fill this gap. We focused particularly on children because previous studies have shown a decrease in the proportion of GP visits specifically provided to children over the past 2 decades.15

Methods

We used “secret shopper” techniques, a well known and often-used method to determine the actual versus reported availability of physician appointments.16 This involved having research assistants pose as parents and telephoning general practice clinics seeking treatment for children with non-urgent, low-acuity conditions. The study was conducted between 1 August and 30 September 2014.

Sample

The sampling frame included all GPs working within the catchment areas of three Medicare Locals in the greater Melbourne metropolitan area. The Medicare Local catchments included urban, suburban and regional areas. Each Medicare Local provided contact details of all GPs within their catchment areas. A random sample of 225 practices were contacted, 75 from each Medicare Local list.

Data collection and analysis

Same-day appointments were sought for paediatric patients based on one of two clinical scenarios, each of which was designed to present non-urgent, low-severity conditions appropriate for general practice. The scenarios were developed with the help of two clerical staff from two general practice clinics and two GPs from other practices. The scenarios were:

a 3-year-old child with an earache and a mild fever; and
an 8-month-old with a slight cough, runny nose and mild fever.

Research assistants telephoned clinics between 9:00 am and 12:00 pm on weekdays to maximise the likelihood of same-day appointment availability.

Attempts were made to make an appointment with a specific, randomly selected GP in the practice. If a same-day appointment with that GP was not available, a request was made for a same-day appointment with any GP in the clinic. Same-day appointments offered with other GPs within the clinic were classified as an available appointment. Data were recorded on whether an appointment was unavailable, available with the requested practitioner, or available with another practitioner within the clinic. Where same-day appointments were available, the time between making the call and the next available appointment was recorded. Bulk-billing status of the clinic was a binary variable (yes/no). Where clinics did not bulk bill, both the upfront cost of an appointment and the final out-of-pocket cost (upfront cost minus the Medicare rebate amount) was recorded. Where the receptionist stated the cost of an appointment was likely to vary on length of appointment, a minimum and maximum cost provided by the practice were recorded.

Where an appointment was offered, the appointment itself was not accepted. Receptionists were told by the research assistant that they would call back if an appointment was actually needed and if the time offered was acceptable. No appointments were actually booked in any practice. The call process was developed and pilot-tested with medical reception staff from GP clinics to ensure that it did not have a significant impact on the administration of the clinics.

The study received ethics clearance from the University of Melbourne Human Research Ethics Committee. This committee required that, after the data were collected, letters be sent to clinics that had been selected within the catchment areas alerting them to the possibility of having been contacted by the research team and describing the nature of the study.

Statistical analysis

All data were analysed using Stata, version 13 (StataCorp). Analyses primarily involved the use of descriptive statistics, with the ?2 test used to investigate potential associations between appointment availability and the availability of bulk-billing in clinics.

Results

Appointment availability

Overall, same-day appointments to see any doctor were offered by 78% of clinics (175/225). Appointment availability between the three Medicare Local catchment areas varied only slightly, from 72% to 81%. However, availability to see a specific doctor in the practice was more limited (Box 1).

Time until available appointments ranged from less than 1 hour in 15% of practices to over 8 hours in a single practice (Box 2). About half of the clinics contacted (111; 49%) were able to offer an appointment within 4 hours. A further 9% offered walk-in appointments, for which a waiting time could not accurately be determined (Box 2).

Appointment cost

About three-quarters of the clinics contacted (168; 75%) offered bulk-billing for paediatric patients. Actual proportions varied between 72% and 80% in the three Medicare Local catchment areas (Box 3).

Box 4 provides a comparison of appointment availability by clinic billing practices. Appointments were more likely to be available in clinics that provided bulk-billing for paediatric appointments, with 82% of those able to offer an appointment compared with 67% of private-billing clinics (P = 0.01). Mean out-of-pocket costs were lower at clinics in which appointments were available than at those in which no appointment was offered. In clinics that did not bulk bill, the minimum out-of-pocket costs cited by reception staff ranged from $2 to $75.65, with a mean of $32.18. Maximum out-of-pocket costs ranged from $12 to $94.30, with a mean of $34.67.

Discussion

Among the most important findings from this study is that there is significant same-day GP appointment availability for children with low urgency, low-acuity conditions in the areas we studied. Further, about three-quarters of clinics with same-day appointment availability offered bulk-billing for paediatric patients, suggesting that financial constraints are unlikely to be a significant barrier to accessibility of primary care appointments. With 78% of clinics able to offer a same-day appointment and with there being multiple GPs practising within the postcodes of our catchment areas, it seems likely that most people attempting to procure such an appointment would be able to do so, and with no out-of-pocket cost. In addition, a high proportion (almost 60%) of appointments were offered either within 4 hours of contacting the clinic or on a same-day walk-in basis.

Our results indicate that increasing attendances for children at EDs are unlikely to be driven primarily by a lack of availability of appointments in general practice. It is possible that a perceived lack of primary care appointment availability may be a contributing factor in some ED presentations. Parents and guardians may simply be assuming a lack of availability of GP appointments, and believe they are more likely to be provided with timely care in an ED. If this is the case, public information campaigns based on our findings may help to change the behaviour of patients in seeking acute care for low urgency conditions at their general practice clinic. Although not all GPs had same-day appointments available, there were multiple GPs able to see patients for non-urgent conditions in a timely manner. This is in contrast to the picture presented in some media reports.2–4

Our findings on the high proportion of clinics that bulk bill for paediatric care (75%), and the higher availability of appointments in these clinics compared with private-billing clinics is important. The perceived cost of appointments may be influencing the behaviour of parents seeking care for children with non-urgent conditions.17 A study of patients 15 years and older found that over a million Australians reported that they had not seen, or had delayed seeing, a doctor due to cost in a given year; another study found that 24.5% of those living in an outer metropolitan suburb cited financial matters as a barrier to visiting a GP.13,14 Publicising the availability and accessibility of same-day appointments for children in bulk-billing clinics may allay concerns over the cost of appointments.

A previous study has shown that if parents are unable to obtain appointments with a practitioner that they know and trust, they may instead seek treatment in an ED.18 Although parents may wish to see the same GP for all of their child’s health care needs, that appears to be an increasingly unrealistic goal. Trends in GP practices indicate that the number of GPs working in larger practices (of four or more partners) is increasing, while only about 11% work in solo practices.19–21 Frequently, patients are seen by several members of a practice.

A limitation of our study is that that the distribution of GPs may differ between metropolitan, regional and rural areas across the country, so our findings may not be generalisable to other parts of Australia. Further research would be required to assess the availability of same-day GP appointments in other areas. Further, we collected our data on weekday mornings — a time likely to maximise appointment availability. A similar audit conducted nearer closing time may produce different results.

This study provides an accurate and current real-time assessment of availability and accessibility of general practice appointments for children with non-urgent conditions from the patient’s perspective. We found high availability of appointments in GP practices, although not necessarily with a specific doctor in the practice. Additionally, the high availability of appointments in bulk-billing clinics indicates a lack of economic barriers to available care. We believe this information can aid in developing data-driven policy approaches for ensuring the availability of the primary care workforce and the use of paediatric ED services for non-urgent conditions. Further, the public should be made aware of the ready availability of GP appointments.

1
Availability of same-day appointments for a mildly ill child in 225 general practices within three Medicare Local catchment areas

Medicare Local	Total phone calls	Appointments available
Medicare Local	Total phone calls	With requested general practitioner	With another general practitioner	Total

NMML	75	25 (33%)	36 (48%)	61 (81%)
MRNWMML	75	17 (23%)	43 (57%)	60 (80%)
INWMML	75	30 (40%)	24 (32%)	54 (72%)

NMML = Northern Melbourne Medicare Local (outer urban); MRNWMML = Macedon Ranges and North Western Melbourne Medicare Local (outer urban and regional); INWMML = Inner North West Melbourne Medicare Local (inner urban).

2
Availability of appointments and time until appointment in 225 general practices

Time to appointment (hours)	Appointments
Time to appointment (hours)	No.	Proportion	Cumulative proportion

Within 1	34	15%	15%
Within 2	38	17%	32%
Within 3	26	12%	44%
Within 4	13	6%	49%
Within 5	20	9%	58%
Within 6	13	6%	64%
Within 7	6	3%	67%
Within 8	4	2%	68%
8 or more	1	0%	69%
Walk-in (time unknown)	20	9%	78%
No appointments available	50	22%	100%

3
Availability of bulk-billing for paediatric appointments in 225 general practices within three Medicare Local catchment areas

Medicare Local	No. of practices	Bulk-billing practices

Within 2	38	17%
Within 3	26	12%
Within 4	13	6%
Within 5	20	9%
Within 6	13	6%
Within 7	6	3%
Within 8	4	2%
8 or more	1	0%
Walk-in (time unknown)	20	9%
No appointments available	50	22%

NMML = Northern Melbourne Medicare Local (outer urban); MRNWMML = Macedon Ranges and North Western Melbourne Medicare Local (outer urban and regional); INWML = Inner North West Melbourne Medicare Local (inner urban).

4
Availability of and billing practices for paediatric appointments in 225 general practices

Appointment available	No. of practices	Bulk-billing	Private-billing

No	50	31 (62%)	19 (38%)
Yes	175	137 (78%)	38 (22%)
All practices	225	168	57

Alcohol-based hand sanitiser: a potentially fatal toy

We present a case of acute ethanol toxicity in a preschool child who developed depressed mental status and hypotension and required inotrope support as a result of ingesting an alcohol-based hand sanitiser

Clinical record

In September 2014, a 3-year-old girl was brought by her parents to the emergency department (ED) with an acutely altered level of consciousness. The history from the parents stated that the young girl had been playing with an alcohol-based hand sanitiser (ABHS; 70% ethanol, 375 mL [Figure]) with her 1-year-old sibling while the parent was in the room. Ingestion of the ABHS had not been witnessed.

On assessment she had a patent airway, a respiratory rate of 18 breaths/min, an oxygen saturation level of 96% on room air, heart rate of 97 beats per minute, blood pressure of 95/54 mmHg and a temperature of 35.5°C. Her Glasgow coma scale (GCS) score was 10/15 (motor response, 5; verbal response, 3; eye response, 2). Her eyes showed alternating disconjugate gaze, with pupils equally constricted at 2 mm. Her pupils dilated in response to noxious stimuli (eg, trapezius squeeze test). The patient’s medical history included normal development, no infectious contacts, and she was fully vaccinated and had no surgical history. No odour of ethanol was appreciated on her breath or her clothing. Her 1-year-old sibling was behaving normally.

A blood glucose test at the bedside gave a concentration of 4.6 mmol/L (reference interval [RI], 4.4–6.1 mmol/L), and a venous gas analysis showed a pH of 7.34 (RI, 7.33–7.44), a normal Pco2 of 44 mmHg, a bicarbonate level of 23 mmol/L (RI, 24–28 mmol/L)and a base deficit of − 3 mmol/L (RI, − 2 to 2) with an increased anion gap of 17 mEq/L (RI, 4–12 mEq/L).

Her measured serum osmolality was abnormal at 357 mmol/L (RI, 265–295 mmol/L). She had a normal haemoglobin concentration, platelet count and white cell count with no evidence of left shift. Results of an electrolyte assay included an abnormal serum sodium concentration of 151 mmol/L (RI, 135–145 mmol/L) and a chloride concentration of 111 mmol/L (RI, 98–106 mmol/L), with normal concentrations of potassium, urea, creatinine and C-reactive peptide (7 mg/L; RI, < 8 mg/L). Liver enzymes were not analysed. An electrocardiogram was normal. A computed tomography scan of her brain without contrast showed no acute intracranial injury. Within an hour of ED admission, the patient developed hypotension (70/22 mmHg) which was treated with two fluid boluses of normal saline (20 mL/kg each) and peripheral adrenaline infusion (0.05 µg/kg/h).

Treating physicians deemed that she was not clinically septic, dehydrated or severely injured based on her history and serial examinations paired with investigations. However, they had a high suspicion of intoxication. Subsequently, her serum ethanol concentration just before adrenaline administration was reported as 260 mg/dL (legal blood ethanol level for drivers in the state of Victoria, < 50mg/dL).

She was admitted to the paediatric intensive care unit (PICU) without intubation. No additional blood ethanol concentration tests were performed. A peripheral blood culture was negative, and serial blood gas measurements showed a normal venous lactate level and gradual normalisation of pH and sodium and chloride concentrations over the following 15 hours. The patient’s condition improved (at 5 hours after her PICU admission, her GCS score was 15/15, she was normotensive without inotrope support and was mobilising) and she was discharged within 24 hours.

Hand hygiene with alcohol-based hand sanitiser (ABHS) is encouraged in health, education and day-care facilities, workplaces and the home.1,2 The active ingredient of ABHS is ethanol or isopropanol at a concentration of 60% to 95%. The increasing intentional ingestion of these products by teenagers, and consequences, have been well reported.3 The Victorian Poisons Information Centre received a total of 15 729 calls in 2013 relating to children aged under 5 years, and reported that topical antiseptics/hand sanitisers was the fifth most frequent source of poison to which this age group was exposed.4

Our unique case shows the toxic effects of ABHS. The patient had altered Glasgow coma scale scores, associated hypotension, hypernatraemia, hyperchloraemia and one of the highest serum ethanol concentrations yet reported in this age group. A surprising feature was the ingestion of an ABHS that comprised 70% ethanol despite parental supervision of play. The hyperchloraemia and hypernatraemia might be explained by the suppression of antidiuretic hormone by ethanol, resulting in water diuresis, with loss of more water than sodium or chloride and the lack of further fluid intake.5 Strict fluid output was not recorded to confirm this.

A published review of Ovid MEDLINE, EMBASE and CINAHL databases shows that ingestion of household products containing ethanol by children is an increasingly common occurrence, and that there is a paucity of studies from outside North America.6 This review includes two retrospective studies from North American poison centres that report a lack of significant effects from unintended paediatric ingestion of ABHS.6 A previously published case reports mild hypothermia, hypokalaemia and the necessity for mechanical ventilation for airway protection during transport to another facility after ABHS ingestion.7

We used a modified Widmark formula to estimate the minimum weight of ethanol needed to be ingested as follows:

Weight of alcohol ingested in grams = (blood ethanol concentration in mg/dL × total body water in litres)/the percentage of water in blood (which is 80.65%).

The patient’s height was 95 cm (50th centile) and her weight was 16 kg, giving an estimated total body water volume of 9.4 L. To achieve a blood ethanol concentration of 260 mg/dL, she would have needed to ingest 30.3 g of ethanol ([260 mg/dL × 9.4 L]/80.65 = 30.3 g).8,9 This equates to a consumption of a minimum 55 mL of an ABHS comprising 70% alcohol (55.3 g ethanol per 100 mL).8

Currently, the only highlighted label on the ABHS indicates that the liquid is flammable (Figure). This may be insufficient to convey the toxic potential of ABHSs to parents, carers and children.

Lessons from practice

Contrary to perceptions, preschool children are able to ingest enough alcohol-based hand sanitiser to develop severe ethanol toxicity.
There should be an increased awareness of the hazards associated with alcohol sanitiser ingestion.

Consensus guidelines for the investigation and management of encephalitis

A summary of a position paper for Australian and New Zealand practitioners

Encephalitis is caused by inflammation of the brain and is a challenging condition for clinicians to identify and manage. It manifests as a complex neurological syndrome with protean clinical manifestations that may be caused by a large number of aetiologies, many without effective treatments. It can be fatal and survivors often experience significant neurological morbidity. Studies have shown variable quality in case management in multiple settings,1–3 emphasising the need for consensus guidelines.

The need for guidelines is also important because encephalitis is a marker of emerging and re-emerging infectious diseases, and is therefore a syndrome of public health importance. There are unique infectious aetiologies in Australia — including Hendra virus, Australian bat lyssavirus, Murray Valley encephalitis virus and West Nile virus (Kunjin virus) infections — that require early identification, reporting and specialist clinical and public health responses. Regionally, causes of encephalitis with potential for introduction into and epidemic activity in Australia include Japanese encephalitis virus, enterovirus 71, dengue virus and Nipah virus. There is also a rapidly growing list of immune-mediated encephalitides that are important because of their potential response to immunomodulatory treatments and their association with underlying tumours.

“encephalitis is a marker of emerging
and re-emerging infectious diseases”

Although comprehensive guidelines have been published elsewhere, including recent international consensus guidelines,4 these are detailed and lack a specific geographic focus. As a result, we have developed a concise guideline for clinicians in Australia and New Zealand5 (doi: 10.1111/imj.12749) that provides a substantial update to previous guidance published in the Journal.6

The guideline was developed by the Australasian Society for Infectious Diseases Clinical Research Network (ASID CRN) Encephalitis Special Interest Group with subsequent, multiple rounds of consultation involving the ASID Guidelines Committee, the Public Health Association of Australia, the Australian and New Zealand Association of Neurologists and the Australasian College for Emergency Medicine.

Main recommendations

The guideline principally consists of two algorithms. The first algorithm addresses the patient with possible meningoencephalitis — a scenario that is frequently encountered in emergency departments. This algorithm is designed to assist clinicians to: consider encephalitis within a wide differential diagnosis, perform appropriate specimen sampling and investigations, and initiate antimicrobial therapy promptly (including acyclovir for possible herpes simplex virus [HSV] encephalitis). In most patients with possible meningoencephalitis, an alternative diagnosis will be made. The algorithm aims to discriminate between patients in whom encephalitis can be excluded and those who require a more detailed assessment. The second algorithm addresses the patient in whom encephalitis is considered likely. This algorithm provides a robust clinical case definition of encephalitis, identifies key first-line (universal) diagnostic tests (Box), outlines a process of excluding HSV disease, and formulates an approach of directed (second- and third-line) diagnostic testing based on risk factors, clinical features and radiological features.

In addressing these scenarios, the guideline answers the following questions:

What features are important to consider during history-taking and examination?
In which patients should magnetic resonance imaging be performed?
What are the common abnormalities evident in cerebrospinal fluid?

Furthermore, it provides advice on the tests that should be done to diagnose the most common causes of encephalitis and defines specific patient subpopulations to highlight differences in aetiology (to help prioritise testing). These subpopulations include: children and neonates, immunocompromised patients, overseas travellers and immigrants, and patients residing in tropical Australia.

The guideline considers the particularly vexing question of the contemporary role of brain biopsy by presenting evidence of its yield in cohorts of patients who have encephalitis. It also introduces the various immune-mediated encephalitides, describes their clinical features and, in doing so, assists the clinician in deciding when to perform specific antibody studies. From a treatment perspective, the guideline defines optimal therapy for HSV encephalitis and outlines possible treatment strategies for other infectious and immune-mediated causes based on lower-quality evidence. In particular, it suggests when to consider empiric antimicrobial therapy and immunomodulatory therapies.

Encephalitis presents a complex challenge to clinicians. Its possibility must be suspected in a variety of presentations, and it requires the performance of a detailed clinical assessment, consultation, and judicious investigation. Unnecessary delays must be avoided, and it is essential to institute empiric therapies appropriately and provide high-quality supportive management. Optimal application of current knowledge is likely to improve diagnosis; however, even with an extensive diagnostic work-up, definitive aetiology may not be identified for 30%–40% of patients with encephalitis.7 Novel agents and a changing geographical distribution of known diseases are likely to be identified with improved surveillance; these possibilities should be considered where unexplained encephalitis clusters occur.

Box anchor (office use only)

Recommended first-line investigation of encephalitis in Australia and New Zealand*5

* Table reproduced with permission from: Britton PN, Eastwood K, Paterson B, et al; Australasian Society of Infectious Diseases; Australasian College of Emergency Medicine; Australian and New Zealand Association of Neurologists; Public Health Association of Australia. Consensus guidelines for the investigation and management of encephalitis in adults and children in Australia and New Zealand (Internal Medicine Journal, Wiley Publishing Asia Pty Ltd, © Royal Australasian College of Physicians 2015).

Let the children go — advocacy for children in detention by the Royal Australasian College of Physicians

Regardless of other considerations, the health perspective requires that the detention of asylum seeker children must stop now

Nelson Mandela’s words, “there can be no keener revelation of a society’s soul than the way in which it treats its children”, should give Australian immigration policymakers pause.1 The evidence is in, and it’s irrefutable — Australia’s detention of asylum seekers is harmful to both adults and children, and children are often scarred for life by their experiences.2,3 Detained children experience significant language and developmental delays, sleep and behaviour disorders, mental health conditions (such as post-traumatic stress disorder, depression, anxiety, self-harm and suicidality), and inadequately treated physical health conditions at greater rates than refugee children who are not detained.2–4The recent Australian Human Rights Commission report, The forgotten children, found that 85% of parents and children reported negative effects on their mental health while in detention. In the same report, clinician-rated assessments of children found 34% had mental health problems that would warrant referral to hospital-based outpatient mental health services for treatment, compared with 2% of children in the general Australian community.4Exposure to parental depression, helplessness and uncertainty, compounded by family separation and incarceration in harsh and unstimulating environments, are all contributory factors.

The Royal Australasian College of Physicians (RACP) has been publicly opposed to the detention of children for more than 12 years. Over the terms of successive governments from both sides of politics, the RACP has consistently advocated, both in the media and directly to decisionmakers, the release of all children and their families from immigration detention, and recommended legislative change to end immigration detention once and for all. In May, the RACP released a comprehensive position statement on refugee and asylum seeker health. Physicians from across our specialties have reviewed the facts, both through firsthand visits to detention centres and by close analysis of the health data. Our position is this: it is imperative that detention of asylum seekers for any length of time must be stopped. There are no circumstances, from a health perspective, in which conditions in detention are acceptable.

    “There are no circumstances, from a
    health perspective, in which conditions in
        detention are acceptable”

Public opinion supports the current approach to immigration policy, with a recent poll indicating that 34% of the community considers the government is taking “the right approach”, while 27% believes it is “too soft”.5 But health professionals have a responsibility to hold policymakers to account. We suggest public views are fed by fear and systematic exposure to misinformation about “illegals” and “queue jumpers”. If we were genuinely interested in preventing drowning, we would work with our neighbours to develop a regional solution that focused on causes, not just deterrence.6

Our legal commitments — and our moral responsibilities

Australia is the only country where mandatory detention is enshrined in legislation. In 2013, the United Nations Human Rights Committee concluded that the arbitrary and protracted nature of detention by Australia, combined with the difficult conditions of detention, were “cumulatively inflicting serious, irreversible psychological harm” upon detainees. Australia was found to be in breach of Article 7 (prohibition of cruel, inhuman or degrading treatment) and Article 10 (requirement that persons deprived of their liberty be treated with humanity and respect for their inherent dignity) of the International Covenant on Civil and Political Rights.7 The RACP was therefore deeply disappointed with the government’s response to The forgotten children report; RACP Fellows had helped to prepare this sobering account of the ongoing harms of detention. The appropriate response would have been immediate action to release all children.4

There has been welcome progress, such as the closure of the remote detention facilities on Christmas Island and the widespread release of children and families over the past 6 months, albeit on temporary or bridging visas. Notably, these visas do not relieve the fear of being returned to life-threatening circumstances, and have been shown to have their own negative mental health impact.8 Despite the progress, 1848 people, including 124 children, remained detained in onshore facilities as of 31 March 2015, and 1707 people were detained offshore, including 103 children on Nauru. On average, people still spend 394 days in detention.9 The current asylum seeker system costs Australian taxpayers more than 3 billion dollars annually.10

Mahatma Ghandi said, “In a gentle way you can shake the world”. We encourage doctors to write to their local members of parliament, and make their views known in as many forums as possible. Asylum seeker health is not about politics, but about our humanity. We are optimistic that, with continued focus on the negative health impacts of this policy, public opinion will eventually turn, and detaining children who are seeking asylum in our country will become a policy of the past.

The Forgotten Children: National Inquiry into Children in Immigration Detention 2014

In violating children’s basic rights, we seriously compromise their mental and emotional health and normal development

No country other than Australia mandates indefinite closed detention of children arriving on their shores. By the end of January 2014, over 1000 children in Australia had been held in immigration detention for more than 7 months on average.1 On 3 February 2014, as President of the Australian Human Rights Commission, I announced a national inquiry into children in immigration detention.

The Inquiry investigated the policy and practice of detaining asylum seeker children which had been supported by both Labor and Coalition governments over an 18-month period, from January 2013 to September 2014.

    “Medical professional organisations …
    have accordingly taken a public stance
        against mandatory detention”

The aim of the Inquiry was not to reconsider the Human Rights Commission’s already formed legal views of immigration detention, but to investigate how the health, wellbeing and development of children was being affected by life in detention. Through visits to 11 different detention centres, the Commission conducted interviews with 1129 children and parents in immigration detention in Australia, using a standardised questionnaire. The Commission also conducted 104 interviews with people in the community who had formerly been detained; received 239 submissions; held five public hearings with 41 witnesses, and obtained data from the Department of Immigration and Border Protection.

A crucial aspect of the Inquiry was the involvement of internationally recognised medical experts as consultants who accompanied Inquiry staff on each of the detention centre visits, and submitted expert reports of their observations.2 The medical professional community also made important contributions through the submissions process and the public hearings.

The Commission provided its report The Forgotten Children: national inquiry into children in immigration detention 2014 to the government on 11 November 2014. The Attorney-General tabled the report in Federal Parliament on 11 February 2015. The report is available online.3

The Forgotten Children report provided unprecedented direct evidence of the negative effect of immigration detention on children. Prolonged detention was clearly and unequivocally shown to have serious negative effects on the mental and emotional health, as well as the development of these children. The report contained the following findings:

The mandatory and prolonged immigration detention of children is in clear violation of the Convention on the Rights of the Child, including Article 24(1) which provides that all children have the right to the highest attainable standard of health.4
Detention creates and compounds mental health problems in children. Children in immigration detention have significantly higher rates of mental health disorders than children in the Australian community. Clinical assessments by doctors working in detention facilities revealed that 34% of children in detention had moderately severe to very severe mental health problems. Less than 2% of children in the Australian community have problems at this level.
There are high rates of self-harm by children in detention. In a 15-month period, from January 2013 to March 2014, 128 children in detention, aged 12 to 17 years, engaged in acts of self-harm, including attempted suicide. One 15-year-old boy in detention in Darwin told Inquiry staff, “I don’t feel safe because of my own self”.
Children are detained in close confinement with adults who suffer high levels of mental illness. Thirty per cent of adults detained with children have moderate to severe mental illnesses.
Children have been exposed to unacceptable levels of violence in detention. From January 2013 to March 2014 the following incidents were reported from detention centres where children were held:
- 207 incidents of actual self-harm
- 210 incidents of voluntary starvation (27 of which
  included children)
- 436 incidents of threatened self-harm
- 57 serious assaults
- 233 assaults involving children
- 33 incidents of reported sexual assault (the vast majority involving children).
The harsh and cramped living conditions on Christmas Island created particular physical illnesses among children. On Christmas Island many children shared a tiny room of 2.5 × 3 metres with up to four people.
The children detained indefinitely in Nauru are suffering from extreme levels of physical, emotional, psychological and developmental distress. While the Inquiry team were not able to visit Nauru, the evidence we received about the conditions through submissions and testimony at public hearings was shocking. We received reports that children and their families are being detained in very hot and cramped conditions in vinyl tents, with no privacy or air-conditioning, serious water shortages and problems with cleanliness and hygiene. The Inquiry also received evidence from staff working in Nauru of incidents of harassment, bullying and abuse of children. The recent report from Philip Moss into the conditions in the detention centre in Nauru confirmed many of the Commission’s concerns.5

Key recommendations of the report are:

That all children and their families in detention in Australia and Nauru be released as soon as possible.
That legislation be enacted so that children may only be detained for as long as is necessary for health, identity and security checks.
That no child be sent offshore for processing unless it is clear that their human rights will be respected.

The finding that detention causes harm to the mental health of children is not new. The Commission’s report following its first National Inquiry into Children in Immigration Detention, released in 2004, found that children in immigration detention for long periods of time were at high risk of serious mental harm.6 Since that time successive Australian Governments, and the Australian public, have been on notice about the human cost of Australia’s mandatory detention system.

Despite the recent detailed findings and recommendations in the Forgotten Children report, at the end of March 2015 there were still 124 children in detention in Australia, and 103 children detained in Nauru.7 There is an urgent need to remove these children from these detention environments which are causing them harm.

Medical professionals who have witnessed the health impact of detention first-hand can and do provide powerful evidence against the policy of mandatory detention. Medical professional organisations including the Australian Medical Association, the Royal Australian and New Zealand College of Psychiatrists and the Royal Australasian College of Physicians have accordingly taken a public stance against mandatory detention.

Public criticism from organisations like these helps to build momentum towards a future in which Australia no longer subjects vulnerable children to the harm documented in the Forgotten Children report.

Changes in psychological distress and psychosocial functioning in young people visiting headspace centres for mental health problems

Improving the mental health and wellbeing of adolescents and young adults is receiving increasing attention throughout the world.1 The Australian Government was the first to invest significant funds in a practical and systematic response to this challenge, initiating a national reform process that created new service platforms for young people through its founding of headspace, the National Youth Mental Health Foundation.2

The initiative commenced in 2006, establishing an initial 10 centres and is set to increase to a network of 100 centres across Australia by 2016. headspace centres are one-stop entry points offering a mix of the services that young people need most. Centres provide early intervention by responding to early presentations of mental health problems and by assisting young people at greater risk of developing mental disorders. Being youth-friendly and non-stigmatising are priorities, and centre activities are founded on youth participation and engagement at all levels.3

From the beginning, the headspace initiative has evaluated its activities, despite the significant challenges inherent in determining the outcomes of such a complex, long-term, real-world, system-wide intervention. A preliminary external evaluation in 2009 showed that young people approved the approach used by the initial centres.4 At that time, however, it was still too early, in terms of implementation of the headspace initiative, to assess outcomes for the clients.

To facilitate investigation of the impact of the headspace centres, an innovative routine data capture system was introduced in 2013. This system collects information each time a young person accesses a headspace centre for service, and attempts to follow them up after they have finished engaging with the centre. Analysis of the dataset has shown that young people presenting to headspace centres have a wide range of mental health concerns, and are typically in the early stages of the development of a mental disorder.5 Further analyses have explored the types of service young people receive at the centres. In the companion paper to this article, we report that most of the young people seeking help at headspace centres present with mental health concerns, that they generally receive a timely response, and receive assessment and mental health care services. We also found that the initiative is primarily supported by funding from the headspace grant and by the Australian Government Medical Benefits Schedule.6

The current study reports the main clinical outcomes for young people who had presented to headspace centres for mental health concerns. The primary aim was to determine the extent to which psychological distress was reduced and psychosocial functioning improved in headspace clients.

Methods

Participants and procedure

Participants were all clients who had commenced an episode of care at a headspace centre for mental health reasons between 1 April 2013 and 31 March 2014. Young people who initially visited headspace for other reasons (situational, physical or sexual health, alcohol or other drug, or vocational reasons) were excluded from analyses. This selection was made because young people presenting with mental health concerns comprise the vast majority of those who seek help at headspace centres and definitely use their mental health care services; young people primarily presenting for other reasons may not have used mental health care services (see the companion paper to this article6). Analyses were limited to a young person’s first episode of care during the 12-month data collection period.

The procedure for the routine collection of data provided by the young people and service providers to the headspace Minimum Data Set is described elsewhere.5 Data related to psychological distress were collected from young people immediately before their first, third, sixth, 10th and 15th visits, as well as at follow-up. Measures of psychosocial functioning were recorded by service providers at each occasion of service.

Young people were invited to consent to being followed up when they first attended headspace. They provided an email address, and data were solicited after a 90-day pause in service provision by sending an email with a link to the follow-up questions. Young people could choose to answer these questions electronically, and responses were uploaded into the headspace data warehouse. Ethics approval for the follow-up was obtained from Melbourne Health Quality Assurance Review.

Measures

The primary presenting concern was categorised according to the clinical presentation features as determined by clinicians. These did not comprise diagnoses, but were rather the main symptoms evident at the initial presentation that were indicative of mental health problems.
Treatment services were recorded by clinicians, and were categorised as: cognitive behaviour therapy (CBT), interpersonal therapy, acceptance and commitment therapy, psychoeducation (including skills training and relaxation strategies), general and supportive counselling, mindfulness-based therapies, motivational interviewing, problem-solving therapy, and other interventions.
Client outcomes that were assessed were:
- the level of psychological distress, based on self-reports according to the 10-item Kessler Psychological Distress Scale (K10);7 and
- overall psychosocial functioning, assessed by service providers using the Social and Occupational Functioning Assessment Scale (SOFAS).8

Appendix 1 presents the number of clients for whom data were available at key time points.

Statistical analyses

IBM SPSS Statistics 21 was used for statistical analyses. Frequencies of each primary presenting concern were calculated, and age group and sex differences were assessed by χ2 analyses with Bonferroni correction for multiple comparisons.

Changes in each of the outcome measures over time were analysed in two ways.9 First, mixed-model repeated measures analysis of variance (ANOVA) was used to assess aggregate changes over time in K10 and SOFAS scores according to time point, number of service sessions, age group and sex. The statistical relationship between K10 and SOFAS scores was expressed as a Pearson product-moment correlation coefficient (r). Differences between the characteristics of clients who provided follow-up data and those who did not were analysed by logistic regression.

Second, significant change, reliable change and clinically significant change scores were calculated for the K10 and SOFAS data, as increasingly conditional indicators of change. The criterion for significant change was a moderate effect size (0.5) or greater for the degree of change.10 The reliable change index (RCI) (indicating reliable improvement or decline) and clinically significant change index (CSI) (cut-off point at which the person is more likely to belong to a non-clinical rather than a clinical population) were determined using Jacobson and Truax’s method.11

For the K10 scores, the RCI was estimated as a 6.73-point change (rounded to 7 points) using reliability coefficients reported for an Australian normative group (age group, 16–24 years) in the 2007 National Survey of Mental Health and Wellbeing.12 Using the same norms, the CSI cut-off was estimated to be 22.56 points (rounded to 23 points). For the SOFAS data, an RCI score of 10 was used; this was based on comparable outpatient psychiatric services data using the Global Assessment of Functioning scale as an equivalent. The CSI for the same comparison group was a score of 69 (Söderberg and Tungström [2006], cited by Falkenström13).

Results

The participants were 24 034 clients from the 55 headspace centres fully operational during the study period. Almost two-thirds of clients were female (62.7%), 36.9% were male and 0.4% were intersex or transgender. The mean age was 17.8 years (SD, 3.3), with 16.7% aged 12–14 years, 35.0% aged 15–17 years, 25.7% aged 18–20 years, and 22.6% aged 21–25 years.

Follow-up data were collected between June 2013 and August 2014. Of the total sample, 20 903 clients (87.0%) were eligible to provide follow-up data; the remaining 13.0% were still receiving headspace services or had not yet had a 90-day service-free period. Only 3.1% of eligible young people (651 clients) responded to the follow-up survey.

Presenting concern and treatment services

The most common mental health problems at initial presentation were depressive symptoms and anxiety, which together accounted for more than two-thirds of presentations. These were the most common presenting reasons for all age/sex groups, with the exception of 12–14-year-old boys, who presented most frequently with anxiety and anger problems and less frequently for depressive symptoms (Appendix 2).

Age and sex differences among those presenting with mental health concerns were indicated by χ2 analysis (χ2 [70] = 3300.57, P < 0.001). The proportions of younger males (12–14 years of age) presenting for anger or behavioural problems was greater than for other age/sex groups. Younger females (12–14 years of age) had higher presentation rates for deliberate self-harm than other groups (Appendix 2).

The most common treatment provided for all primary presenting concerns was CBT; for example, 43.6% of service provided to clients presenting with depressive symptoms involved CBT. A similar pattern of treatments was evident for all primary presenting concerns, with the second most common treatment being supportive counselling (except for borderline personality trait presentations). Psychoeducation was ranked third for most mental health problems (Box 1).

Mean changes in outcomes over time

Changes in the two outcome scores over time are depicted in Box 2 and Box 3. These plot the mean scores at each session that they were recorded, according to the total number of sessions attended. The sample sizes for each point declined as the number of sessions attended increased (Appendix 3). The follow-up data analyses were based on a particularly small sample size; further, no clinician-rated measures were available at this point, as the follow-up was based solely on self-report.

For the change in K10 between initial presentation and last recorded assessment, the factor with the greatest effect size was time, which explained 10.8% of the variance (Appendix 4, ANOVA 1; Box 2). Including the 3-month follow-up in the analysis showed that the time effect remained significant and explained 12.5% of the variance (Appendix 4, ANOVA 2). On average, there was a 3-point improvement in K10 scores from first to last assessment, and a further 3-point improvement from last service to follow-up for the small proportion of young people who provided follow-up data.

It is, however, important to note that the group of clients who provided follow-up data was significantly different from the much larger group of those who did not (χ2 [17] = 153.43, P < 0.001, Nagelkerke R2 = 0.062). Those who provided follow-up data were more likely to be female (odds ratio [OR], 1.63; 95% CI, 1.27–2.11), older (OR, 1.07; 95% CI, 1.04–1.11), have attended a greater number of service sessions (OR, 1.59; 95% CI, 1.39–1.82) and had better psychosocial functioning at exit (OR, 1.03; 95% CI, 1.02–1.05).

For change in SOFAS scores, time was again the strongest factor, but explained only 4.5% of the variance in this outcome measure Appendix 3, ANOVA 3; Box 3).

Significant, reliable and clinically significant change

The percentages of young people showing significant, reliable and clinically significant change between their first and last recorded assessments (not including follow-up) are presented in Box 4. Of the young people for whom data were available, psychological distress was significantly reduced in 36%, was reliably improved in 26%, and clinically significantly improved (by crossing the threshold distinguishing a clinical from a non-clinical population) in 21%. In 13% of clients, K10 scores significantly worsened, and in 8% they reliably deteriorated. According to clinician ratings of psychosocial functioning, significant and clinically significant improvement were each evident for 37% of the assessed clients, while 31% reliably improved. In contrast, function significantly declined in almost a fifth of clients, and reliably declined in 15%.

For 9957 clients, both K10 and SOFAS change data were available. Of these, 59.9% significantly improved and 49.2% reliably improved on at least one of the two scales, while 40.4% of those in the clinical group showed clinically significantly improvement on one or both of the scales.

It is important to note that the K10 and SOFAS scales measure different aspects of mental health, and that psychological distress (K10) was self-reported by young people, while social and occupational functioning (SOFAS) was assessed by a clinician. K10 and SOFAS scores were weakly correlated at presentation (r = − 0.19, P < 0.001) and at final assessment (r = − 0.23, P < 0.001).

There were statistically significant differences between those who improved and those who did not (significant improvement on at least one measure: χ2 [15] = 1168.48, P < 0.001, Nagelkerke R2 = 0.153). Improvement was predicted by greater distress (OR, 1.03; 95% CI, 1.02–1.04) and lower psychosocial functioning (OR, 0.94; 95% CI, 0.94–0.95) at service entry, and by attending a greater number of service sessions (OR, 1.16; 95% CI, 1.10–1.22). Age, sex and primary presenting concern did not predict improvement.

Discussion

This article reports the first outcome data for young people who have accessed the national headspace centre network for mental health problems. The analyses focused on the two key clinical outcomes, psychological distress and psychosocial functioning. The results show that psychological distress was significantly reduced in more than one-third of clients for whom data were available, and psychosocial functioning improved in a similar proportion. If improvement in either measure is considered, 60% of clients experienced significant change. Improvements in young people with greater distress and poorer functioning at service entry were noted in those who engaged well with the service (ie, attended more health care sessions). The findings are consistent with those reported from a single Sydney-based headspace service that found both symptomatic and functional improvements in its clients.14

Comparative data that would help determine whether these outcomes are acceptable are difficult to find. headspace clients present for a wide range of reasons and attend for varying numbers of sessions; although only outcomes for mental health clients were examined here, these young people still constitute a diverse group.6 Comparisons with outcomes from highly controlled clinical studies are therefore inappropriate. A study of psychotherapeutic outcomes in similarly aged young people attending a mental health clinic in the Netherlands, where the clients also presented with a variety of mental health concerns and received varying amounts of service, found that psychosocial functioning reliably improved in 19% of clients.13 This compares with the considerably higher rate of 31% that we have reported.

Comparative Australian data are scarce. Public tertiary mental health services use age bands of 0–17 and 18–64 years in their outcomes reports, and these are not comparable with either the age range of clients in these analyses or with the enhanced primary care service model of headspace. The most recent report from the National Outcomes and Casemix Collection (NOCC), which used the Health of the Nation Outcome Scales (HoNOS) family of outcome measures, showed that 37% of those aged 0–17 years and 24% of those aged 18–64 years using community-based public mental health services reported a significant improvement between the first and last occasions of service.15 The outcomes in young people reported here are similar to the child and adolescent results of the NOCC report, but much better than its findings for adults. However, the degree to which HoNOS outcomes are comparable with K10 and SOFAS scores is unclear, and the lack of directly comparable age groups makes interpretation difficult.

Drawing conclusions from the current study is restricted by several limitations. Primarily, the absence of a control group and other limitations inherent to observational studies means that the changes in scores reported cannot be attributed to headspace care.16 Further, most of the outcome data were derived from the last recorded assessment point for each client, but for many young people this was not at the completion of treatment. Our results are therefore likely to underestimate psychological and psychosocial gains in the course of treatment.

The follow-up rate was disappointing, although wholly expected, and highlights the considerable challenges in persuading young people to provide follow-up information after they have stopped attending for service. Without committing substantial resources to maintaining contact with people after leaving a health service, obtaining longer-term outcomes from real-world interventions will always be a major hurdle. Nevertheless, the headspace initiative has developed a process that attempts to routinely follow up young people after the end of service, and this may be unique in service delivery outside a well resourced prospective clinical trial. Over time, this follow-up database will grow and yield a rich source of information, even though there will be inevitable bias in those who provide follow-up data.

Another limitation is that the data cannot clearly determine the extent to which headspace clients received sufficient and appropriately matched “doses” of evidence-based therapies for different presenting problems and diagnoses, although it is evident that most clients did receive evidence-based therapies. headspace centres differ considerably in both their priorities and their capacity as a result of the diverse community and workforce contexts in which they are embedded,17 although all centres pursue a common vision of youth-focused, evidence-based, early intervention.3 The complexity and severity of young people’s presenting concerns also varies, with a substantial subset of young people who need, but are unable to gain, access to specialised tertiary services,18 which may have an impact on average improvement scores for the total client group.

Nevertheless, this article demonstrates that headspace is committed to examining and reporting outcomes for young people using its services, and that the headspace centre initiative is associated with improved mental health outcomes for a large number of young people assisted by this network across Australia.

1 Most common types of mental health care service received by headspace clients, according to the primary presenting problem*

Total sessions

Treatment services type rank

Presenting concern

Depressive symptoms

25 708

CBT
(43.6%)

Supportive counselling
(18.6%)

Psycho-education
(8.2%)

IPT
(7.5%)

ACT
(4.8%)

Anxiety symptoms

21 516

CBT
(47.0%)

Supportive counselling
(14.6%)

Psycho-education
(9.7%)

ACT
(7.5%)

IPT
(4.9%)

Anger problems

3859

CBT
(36.7%)

Supportive counselling
(21.3%)

Psycho-education
(16.6%)

IPT
(6.8%)

Motivational interviewing
(3.3%)

Stress related

3521

CBT
(34.0%)

Supportive counselling
(21.9%)

Psycho-education
(12.1%)

IPT
(7.2%)

ACT
(5.5%)

Suicidal thoughts or behaviour

2355

CBT
(36.9%)

Supportive counselling
(19.5%)

IPT
(9.6%)

Psycho-education
(9.2%)

ACT
(5.1%)

Behavioural problems

1389

CBT
(32.1%)

Supportive counselling
(23.3%)

Psycho-education
(18.8%)

IPT
(4.7%)

ACT
(3.6%)

Deliberate self-harm

1479

CBT
(36.3%)

Supportive counselling
(22.4%)

Psycho-education
(11.8%)

IPT
(6.6%)

ACT
(5.8%)

Eating disorder related

1159

CBT
(47.9%)

Supportive counselling
(12.9%)

Psycho-education
(8.4%)

IPT
(7.1%)

ACT
(6.0%)

Psychotic symptoms

531

CBT
(33.5%)

Supportive counselling
(23.0%)

Other
(18.8%)

Psycho-education
(12.2%)

IPT
(7.9%)

Borderline personality traits

523

CBT
(31.4%)

Other
(18.2%)

Supportive counselling
(17.8%)

Psycho-education
(11.1%)

IPT
(7.6%)

All presenting concerns

63 221

CBT
(42.8%)

Supportive counselling
(17.9%)

Psycho-education
(9.9%)

IPT
(6.5%)

ACT
(5.6%)

CBT = cognitive behaviour therapy. IPT = interpersonal therapy. ACT = acceptance and commitment therapy.

* Percentages refer to proportion of total mental health care sessions received by clients presenting with the respective concern. Percentages in rows do not add to 100% as other treatment modes were possible.

2 Mean psychological distress scores (K10) at different time points

3 Mean psychosocial functioning scores (SOFAS) at different time points

4 Proportion of young people showing significant, reliable and clinical change in psychological distress and psychosocial functioning between first and last service ratings

Measure	Method	Number of clients	Change category
Measure	Method	Number of clients	Improvement	No change	Deterioration
K10	Significant change (effect size ≥ 0.5)	10 228	36.1%	50.9%	13.0%
	Reliable change	10 228	26.2%	65.9%	8.0%
	Clinically significant change*	8205	21.1%	78.9%	NA
SOFAS	Significant change (effect size ≥ 0.5)	15 496	37.1%	43.4%	19.5%
	Reliable change	15 496	30.9%	53.6%	15.5%
	Clinically significant change*	9556	37.0%	63.0%	NA

K10 = Kessler Psychological Distress Scale. SOFAS = Social and Occupational Functioning Assessment Scale. NA = not applicable: young people in the clinical population are, by definition, not able to deteriorate, but rather remain in the clinical population. * It was not possible to assess the clinical improvement of young people who were in the non-clinical population at the first time point (19.8% of total sample for K10 and 38.3% of total sample for SOFAS); they were therefore excluded from this analysis.

Why the measles vaccine works for life

A new study has found the reason why measles only needs a two-dose vaccine in childhood to provide immunity for life.

The study, published in Cell Reports, has found that while influenza mutates regularly, the surface proteins the measles virus uses to enter cells are ineffective if they suffer a mutation. Therefore any changes to the virus would come at a great cost.

The researchers mutated all the genes in a virus using a high-throughput approach. They inserted the mutations across the measles genome and looked to see whether the viruses were still incapable of infection.

Unlike the influenza virus, measles could not tolerate any mutations to the proteins that are recognised by the human immune system.

Senior study author Nicholas Heaton, a microbiologist at the Icahn School of Medicine at Mount Sinai, New York said they didn’t expect such results.

“The almost complete lack of tolerance to insertional mutation of the measles proteins was surprising. We thought that they may be less tolerant than the influenza proteins, but we were surprised by the magnitude of the difference,” he said.

Heaton says they don’t yet know why the measles virus would find an evolutionary advantage to being so rigid.

“If we can better understand why flexibility or rigidity is imposed at a molecular level, we may be able to understand more about why we see different dynamics of viral evolution.”