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. 2025 Sep 21;61(12):1857–1864. doi: 10.1111/jpc.70190

Marked Variation in Paediatric Problematic Severe Asthma Services Across Australia and New Zealand

Ajay Kevat 1,2,✉, Samuel Dalton 3, Bernadette Goddard 4, Laura Mitchell 5, Eloise Graham 6, Louisa Owens 7,8, Tom Goddard 9,10,11, Melinda Gray 8, Stuart Haggie 12,13, Ingrid Laing 14,15, Anna Mulholland 16, Stephen Oo 17,18, Robert Roseby 19,20, Jagdev Singh 12,21,22, Shivanthan Shanhikumar 23,24,25, Paul D Robinson 1,26
PMCID: PMC12689487  PMID: 40976913

ABSTRACT

Aims

Asthma affects > 10% of children in Australia and New Zealand (NZ), with up to 5% of those having severe disease, presenting a management challenge. We aimed to survey tertiary paediatric respiratory services across Australia and NZ using a custom‐designed questionnaire, to conduct a cross‐sectional observational study of the numbers of children with problematic severe asthma (PSA) seen, the number treated with biologic therapy, outpatient clinic/multidisciplinary team (MDT) services available, investigations and tools routinely used and approaches utilised for transition to adult care.

Methods

A custom‐designed online survey was distributed via email to Directors of public paediatric respiratory services across Australia and NZ (n = 14). Reminders to prompt completion were emailed regularly over 3 months.

Results

All sites provided survey responses. The estimated number of children with PSA across 12 sites was 561 (53 prescribed biologic treatment); two sites felt unable to provide accurate estimations. Most sites (n = 8) did not have a MDT approach either as MDT clinics or meetings; patients were managed in either asthma (n = 7, 50%) or general respiratory clinics. Most sites (85%) utilised questionnaires regarding asthma control for assessment, although some utilised additional questionnaires. Remaining tools and investigations varied widely across centres. Only four sites (29%) had established processes for transition to adult care.

Conclusions

Given notable heterogeneity in service availability and PSA management across tertiary sites, children may experience variability in care dependent on their location. Most centres lack MDT models of care, which are considered the international best‐practise standard for management of children with PSA.

Keywords: asthma, Australia, child, New Zealand

Summary.

  • What is already known on this topic?
    • ○
      Severe asthma in children is associated with lower quality of life, school attendance and greater healthcare utilisation and activity limitation.
    • ○
      Access to a specialised multidisciplinary paediatric asthma service to facilitate comprehensive evaluation and management is best practice.
  • What this paper adds?
    • ○
      A contemporary review of tertiary paediatric respiratory services across Australia and New Zealand reveals marked variation in service provision for paediatric severe asthma.
    • ○
      The number of children with severe asthma managed by these centres is exceeded by the likely number of cases, highlighting challenges in equitable access to care.
    • ○
      Additionally, there is notable variation in models of care and resources available for paediatric asthma healthcare provision across tertiary paediatric respiratory sites.

1. Introduction

Asthma in Australia accounts for 31 000 hospitalisations, over 400 deaths and over $24 billion of healthcare burden per year [1]. In New Zealand (NZ), 1 in 8 people take medication for asthma; it is the leading cause of hospitalisation for children, and it accounts for $1 billion of annual healthcare burden [2]. Asthma is the most frequent paediatric chronic disease, affecting over 10%, half of whom suffer ongoing poor asthma control [3, 4, 5]. It is estimated that 2 to 5% of children with asthma have severe disease [6, 7], equating to 11,200 to 28,000 children across Australia and NZ [8].

Several definitions for severe asthma exist in the paediatric literature [9]. For the purposes of this introduction, we will refer to the severe asthma definition outlined by Pijnenburg et al. in a recent state‐of‐the‐art review [8]. Problematic Severe Asthma (PSA) is the umbrella term to describe children who present with ongoing persistent symptoms or frequent attacks despite high‐intensity treatment. This consists of three subgroups:

  1. Difficult‐to‐treat asthma: children who have modifiable factors causing poor control and asthma control is achieved once these factors are addressed.

  2. Refractory difficult asthma: children where modifiable factors are identified but unable to be addressed and asthma control is difficult to achieve as a result. These factors include but are not exclusive to psychosocial issues such as adverse home environments, poor parental/carer supervision, or comorbidities such as obesity, which are largely beyond the control of the child.

  3. Severe therapy‐resistant asthma is defined by ongoing poor control despite conventional treatment being optimised and modifiable factors being addressed.

There is phenotypic heterogeneity among patients, contributing to complexity in clinical management [10]. Paediatric‐specific guidelines for severe asthma management are often limited to comments within adult‐orientated documents [11]. However, leading international paediatric institutions have published their structured approach [12, 13]. The four pillars of care are: (i) a multidisciplinary team (MDT) approach to specialised care; (ii) confirming diagnosis and excluding diseases that mimic severe asthma; (iii) assessment of modifiable factors, severity, clinical investigations and identification of comorbidities, phenotypes and subgroups of asthma; and (iv) targeted severe asthma management [9, 12, 13]. Effective management requires the time and expertise of multiple health care professionals including specialist respiratory nurses, physiotherapists, respiratory scientists, clinical psychologists, dietitians, speech pathologists, pharmacists, clinical physiologists, child safety/protection teams and social workers, as well as physicians. Demonstrable improvements in care and outcomes outline the benefits of this approach [12, 13, 14]. While these frameworks have been developed internationally, variation across centres may occur and the extent of this in Australia and NZ is unclear.

In 2021, a Thoracic Society of Australia and New Zealand (TSANZ) working group was formed to consider the establishment of a paediatric severe asthma registry, aligning with an existing Adult Severe Asthma Registry [15] and other international paediatric severe asthma registries [16]. Following an expression of interest process through TSANZ, supplemented with further invitations to ensure representation across all public tertiary paediatric departments within Australia and NZ, the group was formed with representation from physicians, allied health, nursing staff and research scientists. As part of an initial body of work, we sought to better understand the current caseload and approach relating to paediatric PSA across tertiary paediatric respiratory centres in Australia and NZ. The study aimed to survey all public paediatric tertiary centres across Australia and NZ to (i) identify what established services and pathways for care for children with PSA existed, (ii) describe the structure and models of care where present and (iii) identify the presence and nature of the transition of care to adult services.

2. Methods

A cross‐sectional survey was undertaken to explore the caseload and clinical service provisions available in Australian and NZ tertiary paediatric respiratory departments for the treatment of paediatric PSA. Ethics approval was obtained from the Queensland Children's Hospital Human Research Ethics Committee: HREC/2022/QCHQ/80117. The TSANZ Paediatric Asthma Clinical Services Survey (Supporting Information) was drafted by all working group members to contain questions based on the recommendations of the aforementioned best‐practice guidelines [12, 13], and was hosted on the Qualtrics XM platform. Invitations to complete it were sent to the directors of paediatric respiratory departments across all public tertiary paediatric respiratory services in Australia and NZ in January 2023, regardless of the population size seen by that service. The invitation requested joint medical and allied health/nursing input for completion of a single submission for any given site. Reminder emails were sent over the ensuing 3‐month period to prompt completion. A descriptive analysis of data submitted (including missing data) was then performed. Parametric and non‐parametric data were presented as mean (standard deviation) and median (interquartile range) respectively, and were compared using appropriate statistical tests. Data are presented in a site‐anonymised fashion.

3. Results

All 14 invited sites completed the survey, representing NZ and all territories and states in Australia apart from Tasmania. Across the sites, replies indicated conjoint senior medical and allied health/nursing staff input into survey responses for 9 sites (64%), with 4 sites (29%) indicating survey completion by respiratory physician(s) only, and the remaining site (7%) nurse only. The mean number of children with PSA across 12/14 sites was 43 (SD 31) with an estimated total of 516 children (Figure 1). Two sites indicated this number was not known or practically ascertainable at their site. Five sites maintained a database or structured list of PSA patients at their centre; four sites indicated ≥ 50 children at their individual site. Estimates of current numbers prescribed monoclonal antibody therapies for asthma (biologics) were received for all 14 sites and totalled 53 patients. All institutions stated that paediatric tertiary care continued until 16 to 18 years of age, with the majority (9 sites, 64%) extending care to 18 years.

FIGURE 1.

FIGURE 1

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Number of paediatric patients with problematic severe asthma cared for across sites (n = 12 sites).

3.1. Established Services and Pathways of Entry

The available PSA services are summarised in Figure 2. While all sites managed patients with PSA in general respiratory clinics (n = 14), only six sites (43%) had a formal MDT process for this patient group (clinic/meeting). Formalised MDT approaches, present at six sites, typically consisted of both clinics and a meeting (4/6 sites). Severe asthma definition/acceptance criteria for the PSA MDT process varied. Three (50%) sites used poor control despite reaching Step 4 or Step 5 of Global Initiative for Asthma (GINA) management steps [17] as an inclusion threshold, with one of these indicating that cases of unusual/challenging asthma management not meeting this threshold would also be considered. Three other sites (50%) provided no specific inclusion criteria, and one site limited MDT clinic access to children over 10 years of age due to limited resources. MDT meetings either facilitated case‐based discussion, patient review, or a combination of the two. Multidisciplinary clinics occurred weekly (n = 1), monthly (n = 2), or quarterly (n = 2). Following attendance at these, patients were either returned to their referring provider for ongoing care (n = 1), entered a shared care model (n = 2), or were retained within the PSA clinic model (n = 2). Half of the sites reported dedicated asthma clinics, which were not specifically for PSA patients, running as frequently as weekly. No NZ sites had specialised asthma clinics or specific PSA services. Seven sites (50%) also ran outreach respiratory clinics. Only one centre reported clinics specifically aimed to meet the respiratory health care needs of First Nations children in regional and remote areas [18].

FIGURE 2.

FIGURE 2

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Specialist respiratory asthma‐related services available across paediatric tertiary sites in Australia and New Zealand.

3.2. Structures and Models of Care With Dedicated PSA Services

Across the six Australian sites with dedicated multidisciplinary PSA meetings and/or clinics, a wide range of MDT representation and frequency of attendance was observed (Figure 3A,B). For these MDT events, attendance by members of the respiratory department was prominent, with respiratory specialists and asthma nurses the most common in attendance. Of other MDT members, the most commonly involved were physiotherapists, psychologists, immunologists and general paediatricians. Dieticians and occupational therapists were not involved at any site.

FIGURE 3.

FIGURE 3

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Representatives at multidisciplinary problematic severe asthma meetings (n = 5 sites, panel A) and problematic severe asthma clinics (n = 5 sites, Panel B).

No sites indicated dedicated funding for PSA services. However, 13/14 (93%) provided information on what they considered essential components of a PSA MDT service (summarised in Figure 4). Three sites (21%) had a PSA protocol/guideline for the assessment and management of PSA patients (with admission offered as part of this), with five (36%) offering a standardised/structured assessment of these patients. However, tests considered relevant to PSA evaluation utilised by sites and their frequency of use varied (Figure 5). Eleven sites (85%) used asthma‐control focused questionnaires in their care of PSA patients. The most commonly used questionnaire was the Asthma Control Questionnaire (ACQ), which assesses control over the previous week (used at all 11 sites). There was notable variation in the frequency and timepoints at which questionnaires were used, and we were unable to confirm the method of collection (self‐administered, completed by child/parent/carer/both or in conjunction with the health professional—the latter being the gold standard). For ACQ, 5/11 sites used it at every visit, with a further five sites using it as clinically indicated. Asthma Control Test (ACT) was used at 6/11 sites, and 3 sites indicated use of the test for respiratory and asthma control in kids (TRACK).

FIGURE 4.

FIGURE 4

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Multidisciplinary team services considered essential by the surveyed sites (n = 13 sites).

FIGURE 5.

FIGURE 5

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Radial tree chart of investigations considered relevant in PSA assessment.

The approach to diagnose comorbidities varied across the 5 sites reporting an offering of a standardised approach to PSA assessment. The most structured approach was observed through the routine use of non‐asthma focused questionnaires to screen for comorbidities. Of these, mental health questionnaires and inducible laryngeal obstruction (ILO) assessments saw the highest adoption (4/5 sites) followed by rhinitis and gastroesophageal reflux disease (GORD) questionnaire assessments which were each employed by 3/5 sites. Ten sites (71%) reported a clinically orientated evaluation for one or more comorbidities at every assessment, while 13 sites (93%) assessed for comorbidities at least when clinically indicated, if not routinely at entry to service and/or at every visit. Some sites sought collateral histories from either the school/childcare service (n = 5) or the general practitioner (n = 9) as part of their assessment.

Most sites assessed medication adherence through patient (n = 12) and/or parent/carer (n = 10) self‐reports. Additional methods employed included pharmacy dispensing records (n = 5), electronic monitoring devices for inhalers (n = 3, all on a case‐by‐case basis and for a variable period between sites), checking eHealth records, or contacting the GP and/or external paediatrician involved in the patient's care (all n = 1 site). Three sites indicated that they offered a scheduled hospital admission for MDT workup as part of a protocol for assessment. Inhaler technique was reportedly assessed at every visit by the majority (64%) of sites. Home visits were available in over half of the sites (n = 8) with seven sites offering this on a case‐by‐case basis while only one site offered them routinely. Site home visits followed a structured assessment in 6 of the 8 sites when completed (75%). Home‐based monitoring of lung function was employed on a case‐by‐case basis by some sites using home spirometers (n = 6).

3.3. Transition to Adult Care

Only 29% of sites (n = 4) indicated a structured process/protocol for transitioning PSA patients to adult services, with two sites having established joint transition clinics with adult services. Resources available for transition varied widely. Two sites had no specific resources at all, while 11 stated they provided support for the transition, though the support varied by centre (and one site did not respond to this question). Several sites implemented transition‐specific strategies, including communication addressed directly to the adolescent/young adult, consultation procedures without parents/carers, utilisation of transition guidelines, readiness assessment tools, joint clinics, peer support, educational workshops, webinars and regular meetings involving both services to aid in the successful transition of patients between paediatric and adult services.

4. Discussion

Australia and NZ have some of the highest rates of asthma among children in the world, affecting approximately 560,000 children across the two countries [4, 19, 20]. Acute asthma hospital presentations are more common in children of Aboriginal and Torres Strait Islander or Māori descent [21, 22]. This novel study is the first to describe the tertiary paediatric services for severe asthma in Australia and NZ, with all sites completing the survey and most sites including both medical and nursing/allied health survey responses. Our research highlights variation in service access and delivery for children with complex PSA across Australia and NZ. Importantly, we describe inequity in paediatric PSA management, influenced by location, among other factors. Whilst we confirmed that there are a significant number of children affected by PSA being managed by tertiary centres, our data on patient numbers is likely to be a significant underestimation for two main reasons. First, not all sites were able to estimate the number of children with PSA at their site, or maintain a database of children cared for with PSA, suggesting that structured frameworks to identify children with PSA being cared for by the tertiary services are not universally in place. Second, paediatric PSA services are currently located in metropolitan settings. Regional and remote communities have a high burden of childhood asthma and their geographic isolation may reflect an important additional barrier to care. Despite this, the estimated numbers (> 500 known paediatric cases with PSA) provide evidence that there is a need for equitable access to high‐quality care that meets international standards for children with this challenging condition.

International recommendations for PSA management encourage a MDT approach to specialised care [9, 23]. For many children this approach leads to a reduction in prescribed asthma treatments [24]. Many tertiary paediatric centres in Australia and NZ reported an absence of key specialised services for effective complex asthma care. Less than half of the sites currently run a specialised MDT PSA meeting and/or clinic, with the majority of PSA patients cared for in general respiratory/asthma clinics. Even at sites with a well‐established MDT approach, regular attendance by several member components of the recommended MDTs was rarely achieved. This may reflect a lack of specific funding for these services.

A 2019 survey by the European Academy of Allergy and Clinical Immunology (EAACI) adolescents and young adult taskforce outlined the gaps that exist in effective care transition for this patient group, despite the fact that transition is recognised to be a significant period of risk for adverse asthma events [25]. Australian data has shown similar challenges in paediatric asthma transition [26]. Our data reinforces and begins to measure the size of this issue across Australia and NZ, with few sites providing dedicated transition clinics or guidelines.

Accurately confirming the diagnosis and excluding diseases that can mimic severe asthma is a crucial aspect of PSA management, as is assessment of modifiable factors, severity, clinical investigations, identification of comorbidities, phenotypes and subgroups of asthma. Our survey found that only a minority of sites utilised a PSA standardised assessment, including the use of questionnaires to assess for common asthma comorbidities, subtypes and mimickers. Nurse‐led home visits are known to be useful in PSA in children as they offer the opportunity for more detailed assessment of the child's environment, learning needs of the family, medication issues and modifiable factors [27]. However, only one site offered them routinely.

Finally, specific to those with therapy‐resistant PSA, access to targeted severe asthma management and treatment in the form of biologic therapy can be life‐changing, with improvements in asthma control, lung function, corticosteroid reliance and quality of life demonstrated [28]. More than 50 children were identified as receiving biologic therapies through the surveyed institutions. Given the lack of infrastructure to routinely identify and assess PSA, it is likely there are significant numbers who may be eligible for and are deserving of but are not currently offered this treatment. In a recently published survey of European respiratory specialists, considerable variation in how biologic treatments were used among PSA subjects was described [29].

A key limitation of our research is its cross‐sectional, survey‐based nature. Findings from this study may not generalise to other countries. The survey did not evaluate online patient education/care, nor did it closely assess variations in approaches across different paediatric age subgroups, or ask services to disclose waiting times for clinics. It was also not feasible to assess whether children seen as contributing to the estimated PSA caseload formally fulfilled paediatric severe asthma definitions. Nevertheless, the results of this survey provide an accurate contemporary cross‐sectional perspective of public subspecialty management of PSA across Australia and NZ. We demonstrate broad heterogeneity across aspects of patient enrolment, access to comprehensive multidisciplinary assessment, utilised investigations and treatments, measurement of relevant outcomes and ability to provide well‐supported transition to adult services. A comprehensive prospective multicentre study of children with PSA with tracking of their evaluation, investigations, management and outcomes over time would be of great benefit in understanding regional differences in patient populations and needs, the impact of care variance, what approaches are optimal and where resources are most needed. The formation of a paediatric severe asthma clinical quality registry would be a logical step forward to achieve this.

Ethics Statement

Ethics approval was obtained from the Queensland Children's Hospital Human Research Ethics Committee: HREC/2022/QCHQ/80117.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Data S1: jpc70190‐sup‐0001‐Supinfo.pdf.

JPC-61-1857-s001.pdf (476KB, pdf)

Acknowledgements

The clinical services survey was conducted with the support of TSANZ staff. TSANZ received funding to support this initiative from Novartis. No members of the Paediatric Severe Asthma Working Party (authors) received funding. Open access publishing facilitated by The University of Queensland, as part of the Wiley ‐ The University of Queensland agreement via the Council of Australian University Librarians. [Correction added on September 24, 2025, after first online publication: CAUL funding statement has been added]

Kevat A., Dalton S., Goddard B., et al., “Marked Variation in Paediatric Problematic Severe Asthma Services Across Australia and New Zealand,” Journal of Paediatrics and Child Health 61, no. 12 (2025): 1857–1864, 10.1111/jpc.70190.

Funding: This work was supported by Novartis Australia.

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Data S1: jpc70190‐sup‐0001‐Supinfo.pdf.

JPC-61-1857-s001.pdf (476KB, pdf)

Data Availability Statement

The data that support the findings of this study are available from the corresponding author upon reasonable request.

Articles from Journal of Paediatrics and Child Health are provided here courtesy of Wiley

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