Background
Paediatric cardiac care typically follows regionalised care models due to the high-complexity and acuity of the care provided. Higher volume centres are, in general, better able to provide this care with both theoretical and applied analyses indicating improved mortality and length of hospital admissions [
1,
2]. The limitations of this model for organisation of care across large regions are the travel distance and timely access to appropriate care for some patients. Longer travel time for care has been shown to independently increase mortality and health care costs [
3] and is particularly relevant in the Australian healthcare context. Global mapping of accessibility demonstrates Australia’s geographical challenges in providing high-quality healthcare resources outside of the cities with a tertiary-level paediatric cardiac centre [
4].
In Queensland, the second-largest state in Australia, interventional cardiac care is provided at the Queensland Children’s Hospital (QCH), Brisbane. This city is located in the extreme south-eastern corner of a state with an area of 1.8 million km
2. A significant number of Queensland’s paediatric patients are discharged to homes that are potentially thousands of kilometers from the surgical centre. This is important given the risk of morbidity in these patients, with recently published population data showing unplanned readmission rates for post-cardiac surgical children of 11% within 31 days of discharge [
5]. Readmission morbidity is often significant, with median length of stay 5 days with an overall mortality of 1.8% for those readmitted and 6.25% for those requiring re-operation. From a long-term perspective, a recent report demonstrated 94% of CHD carers feel worried about their child and attend a higher number of consultations with both cardiologists (median 4/yr) and General Practitioners (GPs) (median 9/yr) compared to adult CHD patients [
6]. Over one-third have also sought emergency care in the last 12 months [
6].
There is a dearth of literature about the impact of distance from care on families with childhood heart disease. In other pediatric cohorts however, families that live long distances from tertiary centres encounter barriers such as lack of trust of local healthcare, financial stress, lower level of education and differing coping methods, including wishing problems away and blaming others [
7]. Consequently, the organization of healthcare services to promote safe and effective delivery of high-acuity paediatric cardiac care and longer-term follow-up requires significant consideration for geographically dispersed populations, particularly for children with heart disease who may benefit from accessing appropriate care close to home [
8].
Primary care physicians may be well placed geographically to provide timely accessible care to children with CHD. Prior research has indicated well-coordinated services developed in partnership with primary care may better meet families’ needs, increase continuity of care, reduce health system burden and be a cost-effective method of service delivery [
8,
9]. Consequently, adequately supported primary care providers are a promising potential alternative to remote clinical monitoring and follow-up care requiring travel to tertiary facilities for care of children with CHD residing outside of urban centres where the specialist cardiac services are located.
To help inform future policy and practice recommendations, this study aimed to (i) describe the geographic distribution of patients accessing an Australian state-wide specialist paediatric CHD service and (ii) estimate travel time for accessing healthcare via general practitioners (primary), nearest paediatric centre (secondary) and specialist paediatric cardiac centre (tertiary) for families who did and did not live in the urbanised region where tertiary services are located.
Discussion
This study represents the first application of GIS mapping to paediatric cardiac care in Australia and described the extent to which distance is a key challenge for accessing care for many patients with childhood heart disease and their families. It also highlights that distance is a significant hurdle in addressing the barriers to improved Indigenous care for those in the north of the country. Collaborative work between adult cardiac clinicians and geographers in Australia has previously indexed the relative inequity of providing acute cardiac care to the adult population in Australia [
14]. Our analysis extended this work by demonstrating the significant variability in access to higher levels of care for our paediatric cardiac patients across the state. Importantly, our analysis highlighted potential opportunities for improving access to care for pediatric patients by utilising primary care providers and secondary level hospital sites. It is also of note that children with Rheumatic Heart Disease in our study are much more likely to live outside the metropolitan area and have less accessible tertiary care. This is important, given that young patients with RHD are usually of Indigenous status and have a high rate of death and non-fatal complications from their disease (up to one-fifth of uncomplicated cases in a recent report by Stacey and colleagues [
15]) with complication risk highest in the first 6 months after diagnosis.
These findings raise important issues regarding equity of access to care for children with CHD in Queensland. Systemic differences in access across regions, such as that observed in the present study, are problematic for achieving equitable care, a key domain of health care quality [
16]. It has been shown, for example, that poor travel time access reduces the utilisation of healthcare facilities [
17]. There are now proposed frameworks to address spatial inequity in health delivery. While this study addresses the
accessibility component of spatial inequity, other equally important domains of
availability,
affordability,
accommodation, and
acceptability remain to be assessed in our context [
18].
The geographic limitations of care access in Queensland need to be contextualised to existing research which demonstrates improved outcomes when paediatric care is centralized [
1]. Much of this work has been done in the United States where the majority of congenital heart surgery centres lie within 40 km of another [
1]. This is in comparison with Queensland where patients travel an average of 308 km. Median travel distance to US centres has been reported at 62 km, markedly lower than the median travel distance of 953 km for Queensland patients outside of South East Queensland.
There is no data on care centralisation for CHD patients in the Australian setting, and it is unclear if the inequities in access observed in our mapping negate the beneficial outcomes observed in other countries. Reassuringly, overall survival in Australian cardiac surgical patients compares favourably with international data from recent registry analysis [
19], however this does not include an analysis of cost or patient experience. In the absence of any feasible option of providing tertiary level care across more centres, other care models need to be considered with a balance between centrally and locally delivered care. Based on the data from our gap analysis GPs are well placed geographically, to be included in any revised model of care. Any redistribution of care services to a local setting will have additional cost reduction to the health care system in transportation savings and reduced loss of income to families.
Existing literature may point to the feasibility and effectiveness of involving primary care providers in the care of children with CHD. While studies are limited, emergent research in the field, in non-Australian settings, has indicated GPs are both comfortable in providing ‘shared-care’ to children with CHD [
20] and families are more likely to access their GP for most health queries [
21,
22]. However, there is evidence that the perceived role of the primary care physician can be very different between parents and physicians [
23] and other data suggesting that communication between the tertiary hospital and local physicians needs to be improved at the point of discharge [
24]. GPs may therefore be well placed to contribute as key stakeholders in an improved model of care provision across a state as vast as Queensland. This assumption however requires additional research regarding the role of the primary care physician in Australia, feasibility of a model with increased reliance on primary care contributions, and examination of the extent to which these findings generalize to other regions.
Limitations
A limitation of this study was the output received through the Google Maps API script. This produces a drive time calculation and does not take into account faster journeys via air or other important considerations such as public transport, car ownership, or variability in different traffic conditions. It also cannot take into consideration shorter travel times for acute retrieval of patients with the Royal Flying Doctor Service. Nonetheless, despite these limitations drive time was a meaningful indicator of the overall time taken for remote patients to access tertiary care, and while air travel may be faster for some patients, our assessment was focused on access to care for patients at risk of deterioration in clinical condition. Such patients requiring care would not be eligible for commercial air travel and would have to wait for aeromedical retrieval. A further limitation is the unknown burden of unplanned readmission in our cohort. Further local analysis will be required to compare our readmission burden to that published overseas.
Conclusion
A geographic analysis of the provision of different levels of care to children with CHD in Queensland demonstrates the problem of distance in our attempts to optimize care to our patient cohort. While a large percentage of patients live significant distances from the surgical centre in Brisbane, primary care physicians are geographically well placed to contribute to improved models of care. The greater accessibility of primary care services highlights the importance of supporting primary care physicians outside metropolitan areas. A well-supported, knowledgeable primary care physician has the potential to improve the outcomes of high-risk patients, including those in our Indigenous communities, but also to reduce costs and burden associated with potentially avoidable travel from regional, rural, or remote areas to access specialist CHD services.
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