Published for the British Institute of Learning Disabilities

Journal of Applied Research in Intellectual Disabilities 2015, 28, 33–42

Supporting Primary Healthcare Professionals to Care for People with Intellectual Disability: A Research Agenda Nicholas Lennox*, Mieke L. Van Driel† and Kate van Dooren* *Queensland Centre for Intellectual and Developmental Disability, School of Medicine, The University of Queensland, Brisbane, Qld, Australia; † Academic Discipline of General Practice, School of Medicine, The University of Queensland, Brisbane, Qld, Australia

Accepted for publication 23 September 2014

Background The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and wellbeing of people with intellectual disability. Over two decades after the only review of supports for primary healthcare providers was published, this paper contributes to an evolving research agenda that aims to make meaningful gains in health-related outcomes for this group. Methods The present authors updated the existing review by searching the international literature for developments and evaluations of multinational models of care. Results Based on our review, we present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system level. Conclusions Strengthening primary care by supporting equitable provision of health-related care for people with intellectual disability is a much needed step

Introduction The need for accessible, affordable, appropriate and quality health care for individuals with intellectual disability is enshrined in international declarations, global reports and evidence-based health research (United Nations 2006; World Health Organization & The World Bank 2011). However, the vast health inequities © 2014 John Wiley & Sons Ltd

towards improving health outcomes among people with intellectual disability. More descriptive quantitative and qualitative research, as well as intervention-based research underpinned by rigorous mixed-methods evaluating these strategies at the primary care level, which is sensitive to the needs of people with intellectual disability will assist primary care providers to provide better care and achieve better health outcomes. Keywords: health assessments, inequality, intellectual disability, primary care Accessible Abstract Many people with intellectual disability have poor health. The authors reviewed what has been written by other researchers about how to improve the health of people with intellectual disability. In the future, people who support adults with intellectual disability should continue doing what they do well, think of other ways to improve health, and do more research about health. At all times, the needs of people with intellectual disability should be the greatest concern for those trying to support them.

experienced by people with intellectual disability remain indisputable (Ouellette-Kuntz 2005). They experience on average 5.4 chronic health conditions, half of which are poorly managed or undiagnosed (Beange et al. 1995). Those with severe disability die up to 20 years earlier, and those with mild disability up to 7 years earlier than do individuals in the general population (Bittles et al. 2002). 10.1111/jar.12132

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Although many of the health inequities experienced by people with intellectual disability are amenable to change (Ouellette-Kuntz 2005; Emerson & Hatton 2007), they are rarely targeted by ‘mainstream’ health promotion efforts, and little is known about how to target these efforts to meet the specific and diverse needs of this group. Access to ‘mainstream’ health services is poor, not least due to challenges health professionals face when working with individuals with intellectual disability. Such challenges include communication, inaccessible or incomplete medical history, lack of training, complexity of care, inadequate professional support and fragmentation of disability support and health care (Lennox et al. 1997; Baxter et al. 2006). Addressing system-level barriers to overcome complex morbidities and early mortality is consequently difficult. In increasingly resource- and timepoor health sectors, ‘vulnerability’ fails to guarantee attention, and while intellectual disability has gained traction internationally through advocacy from individuals, their families and professionals who support them, this group remains largely overlooked by most decision makers (Ouellette-Kuntz 2005; Krahn et al. 2006). Despite this overwhelming lack of attention, small but important health and social gains have been made among people with intellectual disability. For example, over the past 50 years, life expectancy has improved – although as discussed above, early mortality remains a critical public health concern (Bittles et al. 2002; Heslop et al. 2014). A corollary to these gains is the growing need for increasingly nuanced health-related interventions developed in collaboration with the healthcare triad (comprised of individuals, their family and supports, and their health care providers), which acknowledge the diverse complexity of the lives of individuals and recognize the ever-burgeoning evidence base regarding acute and chronic health needs of general population groups. It is against this backdrop of complex, diverse and multidisciplinary health science that primary health care professionals continue to deliver health services to people with intellectual disability. In 1997, a review of the extant evidence base identified key knowledge gaps for primary healthcare professionals working with this group (Lennox & Kerr 1997). Since then, the past two decades have seen (i) myriad advances in the primary healthcare sector itself, (ii) the publication of the global report on disability (World Health Organization & The World Bank 2011) offering a conceptual framework for developing interventions guided by the biopsychosocial model of disability and (iii) critical advances in information and

technology and associated applications for health care. The social disability movement has continued to build momentum, advocating for the necessary and active involvement, participation and collaboration of individuals across research, policy and practice. Given these and other changes, it is timely now to reflect on the persistent and contemporary challenges for primary healthcare providers and researchers and to offer contributions to an evolving research agenda that makes meaningful gains towards improved health and wellbeing for people with intellectual disability. This study aims to present a brief snapshot and review of the supports available to primary healthcare providers working to improve the health of people with intellectual disability. To achieve this aim, we updated the only published review relating to primary care and people with intellectual disability (Lennox & Kerr 1997) and built on this by undertaking a targeted and critical review of contemporary literature, with a focus on multinational models of care. Although our study, an unstructured review of the extant literature, did not aim to assess the quality of studies located, it required analytical reinterpretation of the literature and provides a useful summary of evidence – similar to, but less formal than, a scoping review (Levac et al. 2010). In this review, we hope to offer some impetus and momentum towards a modern conceptualization of where further research is needed for the provision of accessible, affordable, quality and appropriate primary health care for this group.

Background The importance of primary health care is evidenced by the profound positive association between its delivery and improved public health outcomes. Primary healthcare-based systems are associated with controlled system costs, and more importantly, decreased mortality and improved health outcomes – including infant mortality, heart disease and early detection of cancer – in disadvantaged populations (Starfield et al. 2005, 2012). Countries with a higher ratio of primary care providers per capita mitigate the negative effects of social disadvantage on health and deliver greater equity in health care, leading to ‘healthier’ populations overall (Starfield 2007, 2010; Starfield et al. 2012). Consequently, greater emphasis on primary health care has formed one of the key strategies implemented in many higher income countries including Canada, Australia, the United Kingdom and the USA (European Observatory on Health Care Systems 1999; Bodenheimer 2003; © 2014 John Wiley & Sons Ltd, 28, 33–42

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Australian Government. Department of Health & Ageing 2010). Critically, it has been identified that better supported primary health care could prevent unnecessary, life disrupting and costly admissions to hospital. For example, in Ontario, Canada people with intellectual disability are up to 13 times more likely to be hospitalized for ‘ambulatory care sensitive conditions’, of which good primary care should be able to ‘delay the progression or prevent serious complications and thus prevent hospitalisation’ (Balogh et al. 2010). Similarly, in the UK, the Learning Disabilities Public Health Observatory has ‘identified a substantial group of largely inappropriate admissions occurring more than five times as commonly in our learning disabilities group as in other people’ (Glover & Evison 2013). The World Health Organization’s (WHO) Alma Ata (1978) defines primary health care as: ‘[. . .] the first level of contact of individuals, the family and community with the national health system bringing health care as close as possible to where people live and work, and constitutes the first element of a continuing health care process’. However, even across resource-rich countries, systems of primary healthcare delivery vary considerably. Two key markers of distinction across these systems include whether primary health care: (i) is the first point of contact for individuals within the health system and (ii) controls entry of individuals into the secondary and tertiary healthcare systems. Consistent with the WHO definition above, in the UK, Canada, Australia, New Zealand and the Netherlands, primary healthcare systems are charged with these first point of contact and gatekeeper roles. Among these countries, differences exist around how clinical services are funded and the degree of involvement of nonmedical practitioners such as practice nurses. There has been and continues to be a shift away from general practitioners operating as solo practitioners towards primary healthcare teams (PHCT). Financial incentive programmes have also increasingly been used to improve the delivery of primary care (Stevens 2005). For example, government payments to general practitioners and/or PHCTs to improve the management of specific chronic conditions (e.g. diabetes) or perform specific or general health screening are embedded in the Australian primary healthcare sector and in the UK (Medicare 2014). These incentive initiatives have delivered improved health © 2014 John Wiley & Sons Ltd, 28, 33–42

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care where previous deficits existed (Steel et al. 2007; Medicare 2014). The complex, fragmented and often uncoordinated delivery systems that operate across primary health care have implications for the services individuals receive, how they pay for them and how well they are delivered. However, despite their location within disparate health systems, all primary health care approaches have contributions to make to the health of people with intellectual disability, and regardless of systems’ structure, providers of primary healthcare experience similar barriers and challenges to the provision of high quality care.

Improving the health of people with intellectual disability Even in countries where strong primary healthcare systems exist, the physical and mental health status of people with intellectual disability remains substantially worse than that of the general population (Lunsky et al. 2013). The extent to which people with intellectual disability experience unmet needs related to their health was first documented in the mid-1990s, and among studies, findings were largely consistent across diverse samples that included disability day service populations (in the UK), residential institutions (in the UK and USA) and geographic community populations (in Australia) (Eyman et al. 1986, 1988; Wilson & Haire 1990; Beange et al. 1995; Kerr et al. 2003). Most of the participants across these studies were, at the time, accessing generic primary care or services from medical staff working within institutions. With the subsequent close of institutions through deinstitutionalisation, generic primary care delivery to this population increased. Since then, there remains substantial evidence indicating that unmet health needs of this population, who receive community based generic primary health care, still exist (Baxter et al. 2006; Lennox et al. 2007; Lunsky et al. 2013). Mental health care, in particular, remains suboptimal among this group; a critical example is that 30–40% of children and adolescents experience psychopathology, but fewer than one in ten receive specialist psychiatric treatment (Einfeld et al. 2006).

Support for primary health care Primary care providers face many challenges to good practice and need support to ENSURE they deliver the highest quality and accessible care to individuals with disability. However, since the initial review in 1997

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(Lennox & Kerr), there has been little evidence to suggest how we might best support primary care practitioners. We present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system-level.

Strategy One: Effectively using what we know Health assessments Health checks (or assessments), such as the Comprehensive Health Assessment Program (CHAP) and the Cardiff Health Check, aim to address some of the barriers to delivering appropriate and acceptable primary health care to individuals with intellectual disability. Health checks take place during a primary care consultation, during which a general practitioner or practice nurse systematically and proactively investigates potential risk factors and deficits in health care, rather than responding to an acute illness-based presentation. Embedded in the tools are a systematic health history collection and a series of prompts to ensure unmet health needs are considered. The tools attempt to ensure better communication and consequently follow-up of health matters between the person with disability, and their supporter(s) and primary healthcare provider. This process delivers education to the practitioner at the time of most need for information and increases the chance of implementation of the assessment and subsequent benefit to the patient (Grol & Grimshaw 2003; Garg et al. 2005). It also educates the person with intellectual disability and their supporter(s), ideally helping them to become stronger advocates for their own health-related needs through better information and empowerment (Llewellyn & Northway 2008; Harrison & Davis 2009; Wullink et al. 2009). Evidence exists detailing the benefit of primary care delivered health checks, including increased health screening, health promotion and identification of new and potentially life-threatening diseases (Baxter et al. 2006; Cooper et al. 2006; Lennox et al. 2007, 2010; Robertson et al. 2011). Although it is intuitively reasonable to assume that these benefits may be associated with improved short- and long-term health, to date, no studies have determined whether checks deliver better chronic disease management across time or whether they are associated with measurably improved physical and mental health outcomes. To inform policy

and practice related to primary health care for people with intellectual disability, these research gaps must be addressed. There also exists a need to better understand: (i) the long-term benefits, (ii) their cost-effectiveness and (iii) the mechanisms through which better health is achieved. The long-term health benefits of better chronic disease management through health assessments may include decreased mortality and current and future morbidity (due to less frequent progression to advanced stages of disease and functional impairment), and ultimately, improved quality of life (due to longer life with improved health; for example, reduced pain and better mobility); however, these outcomes remain difficult to capture empirically. Despite the challenges associated with conducting longitudinal research (including cost, barriers to recruitment and addressing attrition), studies are needed to develop a better understanding of these benefits and how the implementation of health assessments interacts with improved health. In the UK and Australia, steps are being taken to measure the implementation of health checks and the associated changes in health outcomes in the long term. Refinements to the health check process continue to be investigated. Researchers are interested in identifying the impact of each individual component of the process (for example, gathering of health information, the consultation and follow-up), which health professional provides optimal delivery of the check (practice nurses or general practitioners), whether subgroups of people with intellectual disability should be targeted by health checks (such as those with known associated comorbidity) and at what age, if any, the health check provides the most benefit. The optimal period for delivery of health check remains uncertain, although one study has suggested annual delivery is ideal (Felce et al. 2008). Incentive payments to primary healthcare professionals, such as those described above, appear to have been effective in improving uptake of the health check as evidenced by experiences in the UK (Glover & Niggebrugge 2013). Alongside these priority research areas, there exists a need to address attitudinal and systemic barriers to the routine delivery of high quality health checks. In their report examining the evidence related to health checks for this population group, Robertson et al. (2010) highlight attitudes among (some) professional staff may contribute to deficiencies in access to and quality of healthcare provision. Interventions that deliver training to address issues relating to the shared understanding of the quality of care needed among health professionals and support © 2014 John Wiley & Sons Ltd, 28, 33–42

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staff would be valuable (Chauhan et al. 2012) particularly given the finding that health assessments may assist in overcoming challenges and barriers to primary healthcare delivery (Lennox et al. 2013). A considerably larger, but equally necessary, shift in community attitudes and greater awareness about disability may also see improved provision of equitable health care for this group (Robertson et al. 2010).

There remains a need to evaluate these initiatives and assess their potential to support and improve the delivery of primary health care to people with intellectual disability. Such an evaluation took place in Scotland where a 3-h specific training of nurses based in general practice found a positive impact on knowledge, skills and practice 3 months after the intervention (Melville et al. 2006).

Strategy Two: Other strategies that offer support to primary healthcare professionals

Integration of embedded guidelines in primary care records

Although gold standard evidence from randomizedcontrolled trials (Lennox et al. 2007, 2010) supports the implementation of health checks, this level of evidence does not exist for any other strategies aiming to improve the delivery of primary (or other) health care to people with intellectual disability. However, many approaches have been implemented and may offer better ways to support the provision of high quality primary health care. The present authors note that, given the relative paucity of research that exists across these strategies, it would be inappropriate to identify ‘priority’ research areas; indeed any rigorous efforts that contribute to an evidence base across these areas would contribute to our knowledge and understanding of how best to support primary healthcare professionals.

Improve health provider knowledge A number of strategies have been developed to meet the education and training needs of primary healthcare teams: • Many countries provide direct education to trainee general practitioners (American Academy of Developmental Medicine & Dentistry 2014), and in the UK and Australia, their Colleges of General Practitioners have intellectual disability health curriculums (Royal Australian College of General Practitioners 2011; Royal College of General Practitioners 2013). • Provision of education as part of the continuing medical education programmes for general practitioners in some countries (American Academy of Developmental Medicine & Dentistry 2014; General Medical Council 2014); however, the extent and depth of this education has not been assessed. • Accessible, electronic disability-specific information integrated into generic information such as the Developmental Disability Guidelines Book provided by Therapeutic Guidelines in Australia (2012). • Other distinct guides and guidelines, such as the Canadian health guidelines (Sullivan et al. 2006). © 2014 John Wiley & Sons Ltd, 28, 33–42

The past 20 years have seen the development of guidelines to inform and improve the delivery of evidence-based primary health care for people with intellectual disability. In Ontario, such guidelines were developed with the explicit aim of improving healthcare delivery, but their effects have thus far not been measured (Sullivan et al. 2006). Indeed, the measurement of effects of guidelines is inherently challenging, and while attempts have been made, evaluation findings have been inconsistent and the quality of the evidence presented variable. Continued work seeks to refine and improve the process of implementation of such guidelines into primary healthcare systems (Isaac et al. 2013).

Computerized decision-making support tools General computerized decision-making support tools have been developed and evaluated in hospital care settings (Lee 2013). The emergence of these tools in general primary health care has seen their ongoing refinement to assist the practitioner to make evidencebased decisions (Bryan & Boren 2008). They have been found to contribute to improved patient outcomes in the majority of studies but require ongoing refinement to maximize their potential (Bryan & Boren 2008). Similar tools may assist informed decision making for primary health care and people with intellectual disability. For example, online prompts can direct the primary healthcare professional to address unmet health needs (such as common comorbidities), perform necessary reviews and identify health screening needs.

Tools to improve information accuracy, retention and sharing Online summaries of health information. Electronic health records (eHealth records), which are defined here as online health summaries that are shared between

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individuals and their healthcare professionals (Fitzpatrick 2000), offer the possibility of sharing accurate, up-to-date and accessible personal health information between the patient, their families, and social and healthcare providers. A key challenge for primary healthcare providers is the loss or poor quality of health information due to staff turnover or communication difficulties. Tools such as eHealth records could help to ensure medical information, past tests and screening will not be lost. The electronic storage and sharing of information between healthcare providers offer many potential benefits including reduction of medication error, better follow-up after hospital or specialist care in the primary care setting and the potential to better include the patient in their own health care. However, concerns about privacy and consent need to be balanced with individual needs and abilities to ensure people with intellectual disability are included through appropriate and acceptable access to eHealth records (Coiera 2013). Further research that seeks the perspectives about privacy and consent from individuals, and their family members and health professionals would help to inform policy makers about where the balance should fall, keeping in mind that the right to confidentiality enjoyed by the general population (and the access extended to health professionals of members of the general population) must be commensurate with that afforded to this and other vulnerable population groups. At the very least, eRecord communication materials should articulate, in easy to understand language, confidentiality issues and other issues pertinent to those with disability so that individuals, and their family members may make wellinformed decisions in relation to this and other systemic health policy programmes.

Hand held health records. Hand held health records (HHHRs) or health passports have been used in other population groups with mixed measurable results (Nguyen et al. 2013). In their recent systematic review, Nguyen et al. (2013) found HHHRs were acceptable and perceived to be of benefit by people with intellectual disability, their families and paid carers, but studies have not shown measureable change in health service activity or recognition of unmet health need in the short term (Lennox et al. 2010; Turk et al. 2010). HHHRs may lead to more discussion between primary health care providers and individuals about health problems, and increase health-related knowledge and awareness of personal health issues (Lennox et al. 2010; Turk et al. 2010; Nguyen et al. 2013). HHHRs may be particularly

useful for certain individuals and their supports, especially those who advocate for themselves; these tools provide a readily accessible health history and suggestions to maximize healthcare delivery which may support better health care. Research related to the Ask health advocacy diary will determine whether adolescents are more likely to attend a consultation and speak up for themselves when consulting general practitioners in Australia (Lennox et al. 2012).

Strategy three: researching primary health care at the system-level In addition to effectively using what is known to work and building on other strategies likely to support primary healthcare professionals, is the need for research that addresses the systems within which health professionals work. In this third strategy, we identify some aspects of health systems that may offer further support for primary health care, which, when combined with the strategies described above, may contribute to improved healthcare quality and access for people with intellectual disability.

Models of providing integrated care In the UK, specialist psychiatrists and nurses in intellectual disability are embedded in secondary healthcare systems (Doody et al. 2012). Their role, in part, involves providing a point of referral and support to primary healthcare teams, as well as management of people with intellectual disability and complex mental and physical health conditions. They usually have access to a specific intellectual disability mental health in-patient assessment service. The presence of these services varies across the UK, as does their interaction with the primary healthcare team (Future Roles Working Group. Royal College of Psychiatrists. Faculty of the Psychiatry of Learning Disability 2011; Royal College of Nursing 2013). Although a specialist intellectual disability psychiatrist in the UK may express a greater interest and confidence in providing mental health care to this population than, for example, a generic psychiatric practitioner in Australia, it remains unknown if specifically-trained psychiatric services deliver superior health outcomes (Jess et al. 2008). In the Netherlands, on 7 February 2000, specialist physicians in intellectual disability became recognized. Currently, 200 such physicians practice across the country and have developed a mature training scheme of 15–20 trainees over a 3-year programme. These © 2014 John Wiley & Sons Ltd, 28, 33–42

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physicians’ practice is evolving from providing all primary care to the provision of specialist care only. In the Netherlands, there is an ongoing move from large congregate care residential facilities to people living alone or with a few other people with disabilities in community settings. This change has seen a parallel evolution of these physicians’ role away from large institutions. Anecdotal reports suggest a preference among physicians who come through the specialist physician training scheme for a specialist role working in collaboration with community-based generic general practitioners. Specialist physicians in intellectual disability may provide superior outcomes in very complex cases, but beyond anecdote, there remains little evidence of effectiveness. The challenges of performing comparisons of outcomes between models of healthcare delivery are substantial, and consequently, it may be some time before an evidence base for different models of integrated care is available (Van Schrojenstein Lantman-De Valk et al. 2007).

Specialist nurses The role of specialist nurses in the UK has also evolved in response to increased community living and shifts away from institutional care (Bollard 1999). The roles and models in learning disability (LD) teams in the UK vary considerably but largely include specialist service provision and enabling access to other services (Improving the Health & Wellbeing of People with Learning Disabilities 2013) To address this integration of service and to support the primary healthcare setting, some LD teams have developed an explicit role as healthcare facilitators (Improving the Health & Wellbeing of People with Learning Disabilities 2013). Although much of the work of healthcare facilitators has gone unreported, the descriptions of this approach suggest benefit to individuals with intellectual disability. The role and type of facilitator varies from the use of specific learning disability trained nurses in the UK to general nurses employed in disability organisations to augment healthcare delivery in Australia and Canada (Stanley 1999; Taggart et al. 2011; Jenkins 2012). This approach may be particularly beneficial where healthcare needs are complex, such as for individuals with multiple, overlapping physical and/or mental healthcare needs. Not least, these roles provide the opportunity to manage health outside of the hospital, which, as discussed, could have benefits for individuals and the healthcare system, most © 2014 John Wiley & Sons Ltd, 28, 33–42

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noticeably in terms of preventing admission and reducing cost.

Conclusions Primary care provides a strong foundation for equitable care across populations, which is underpinned by evidence of better health outcomes and cost-effectiveness. Its potential and greater accessibility is especially important for vulnerable groups in society. However, the needs of people with intellectual disabilities often remain invisible or unaddressed. Strengthening primary care by supporting primary care providers to provide health-related care for people with intellectual disability is a first and much needed step towards improving their health outcomes. Evidence for strategies to achieve this is sparse, but our scoping review of the extant literature has elicited three key approaches to building on this evidence to support primary healthcare professionals. First, our review supports the use of health checks as an opportunity and tool to identify health risks as well as empower people with intellectual disability and their carers. Second, our review highlights that other strategies that focus on educating health professionals or providing them with tools to facilitate decision making and communication are even less researched and evidence for their effectiveness is lacking. However, these strategies offer useful directions for PHCTs and research that contributes to understanding their efficacy is urgently needed. Finally, our review notes that structures within primary care systems should be considered by researchers and policy makers. More descriptive quantitative and qualitative research as well as intervention-based research underpinned by rigorous mixed-methods approaches evaluating these strategies at the primary care level, that is sensitive to the needs of people with intellectual disability, will assist primary care providers to provide better care and achieve better health outcomes for this overlooked group.

Acknowledgments The authors wish to thank Ms Lyn McPherson for her assistance in the preparation of this manuscript.

Conflict of interest The University of Queensland owns the CHAP and receives a licensing fee from organisations that use the

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CHAP. One third of this licensing fee is paid to Nicholas Lennox.

Correspondence Any correspondence should be directed to Nicholas Lennox, Queensland Centre for Intellectual and Developmental Disability, The University of Queensland, Mater Misericordiae Hospital, South Brisbane, Qld 4101, Australia (e-mail: [email protected]. au).

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