Chapter 8Data, research and international models of care
8.1The committee heard that improved data collection and more research into attention deficit hyperactivity disorder (ADHD) would go some way to addressing the knowledge gaps in the diagnosis, treatment and support of ADHD, and therefore improve the lives of people with ADHD.
8.2The committee also heard that different models and approaches have been taken to ADHD services overseas, and that Australia's services could benefit from the implementation of key aspects of these overseas models to local contexts.
8.3This chapter examines in more detail the evidence provided regarding ADHD research, including research on co-occurring conditions, and international best practice models and programs.
Government research spending
8.4The Department of Health and Aged Care (Health and Aged Care) advised that the Australian Government funds health and medical research through the Medical Research Future Fund (MRFF) and the National Health and Medical Research Council (NHMRC). Health and Aged Care stated that ADHD-related research funding has been provided as follows:
MRFF—$173.73 million via 98 grants directed at mental health research between 2015 and March 2023, including $4.04 million to ADHD-specific research; and
NHMRC—$30.1 million between 2000 and 2022.
8.5In 2019, Deloitte Access Economics estimated ADHD research spending by the NHMRC totalled $15.7 million between 2000 and 2015, or around $820 000 annually.
8.6Health and Aged Care also provided $1.5 million for the development of the Australian ADHD Professionals Association's Australian Evidence-Based Clinical Guideline for ADHD (Clinical practice guideline), and related consumer companion.
8.7In addition, the 2021–22 Budget allocated funding over four years to conduct a child and mental health and wellbeing study, with ADHD being considered as an area of interest.
8.8The 2022–23 Budget also set aside $3 million for a University of Melbourne project to 'strengthen the care available for rural children, who have limited access to specialist paediatric care'.
Improving nationally consistent data collection
8.9Evidence to this inquiry highlighted areas where there is insufficient or inconsistent data about the prevalence, diagnosis and support of ADHD. Thelack of data in these areas makes it more difficult for researchers and clinicians to determine the prevalence of ADHD in certain populations, and appropriately communicate the range of supports available. Specific areas identified throughout the inquiry included:
the prevalence of ADHD in First Nations peoples, especially in children, and those within the criminal justice system;
the number of participants in the NDIS who have ADHD (where it is not identified as either a primary or secondary disability);
the number of children with ADHD that have been excluded from schools or for whom school refusal is a factor; and
healthcare workforce data to guide workforce planning, resource allocation and policy development.
8.10Dr Grocott of the Australian Adult ADHD Interest Group also called for the adoption of 'universal outcome measures to monitor and evaluate patient outcomes Australia-wide' that would provide a large database of treatment models, which could be used for research purposes, while respecting service users.
Calls for more ADHD research
8.11The committee heard from the Royal Australian College of General Practitioners (RACGP) that a process for setting ADHD research priorities was required, and that priorities should be established in collaboration with people with lived experience and other stakeholders.
8.12This view was supported by the Canberra and Queanbeyan ADHD Support Group, which suggested government funding to establish a strategic research plan. This plan should incorporate a gap analysis to 'identify ADHD knowledge gaps and future needs', in consultation with ADHD lived experience organisations and individuals. The group further suggested a strategic plan be supported by research action plans aimed at addressing research gaps.
8.13Ms Louise Brown, ADHD advocate, researcher and person with lived experience noted that people with ADHD were not always involved in research:
Research into ADHD [was] not being conducted using participatory research practices (meaning people with ADHD were not involved in research conceptualisation, development, and implementation). This has improved but needs to be mandated to ensure it becomes the norm rather than the exception.
8.14Witnesses, including Ms Brown, called for future research on ADHD to be genuinely co-designed with people with ADHD, and to ensure that it:
… be conducted in a participatory manner. This will help to bridge the gap between research and lived experience, and ensure research findings are of high validity, utility and relevance.
8.15Numerous submitters and witnesses advised that improved research efforts are required, from basic data collection to more specific clinical research to produce evidentiary support, including prevalence; why rates of diagnosis are increasing; and translation of research into clinical practice.
8.16The committee also received calls for more research into specific aspects of ADHD, as discussed below.
Evidence-informed clinical practice research
8.17Witnesses highlighted the need for more research to ensure that people with ADHD receive evidence-informed support services, and for the results of research to be better translated into improvements in clinical practice.
8.18Recommendations put to the committee focussed on the need for more research into practical strategies and supports that the workforce can harness to help implement strategies that those with lived experience, including children, could draw on.
8.19Dr Geoff Kewley, Mr Scott Beachley and Mr Chris Brideson agreed, observing that there needs to be more focus on research that impacts social outcomes:
There is currently a huge disconnect between what is already known in the research field about ADHD and clinical application. Much more funding must be provided for service delivery and training, rather than towards the already voluminous research, unless that research is service delivery targeted.
8.20Witnesses contended that this kind of research would help address the misinformation, and potentially improve workforce communication with neurodivergent people, and implement lived experience-informed approaches to support.
ADHD models of care
8.21Submitters including the RACGP and WA Health called for more research into innovative shared models of care—including their cost benefit.
8.22Mr Matthew Tice from ADHD Australia described to the committee a 'chronic underinvestment and lack of understanding about the everyday challenges and stigma people with ADHD face in this country'. ADHD Australia therefore recommended that:
… the Australian parliament improve access to timely, accurate and affordable ADHD diagnosis and research into unblocking care pathways and facilitating primary health networks to investigate innovative solutions.
8.23The RACGP WA ADHD Working Group suggested that such research could 'dramatically increase the capacity of the health system to diagnose, support and provide treatment options in non-discriminating ways.
8.24The Australian Medical Association Tasmania specifically called for more research into multi-modal treatment options for girls, women, older people, culturally and linguistically diverse, and First Nations peoples, given these group's needs, and the lack of existing research into these cohorts.
ADHD and other conditions
8.25Evidence provided to the committee indicated that there is very little research on ADHD and co‑occurring conditions, meaning that more research is needed regarding the association between ADHD and other conditions to better understand the relationships between them. Such understanding could inform training and education requirements for the workforce, and help to develop support pathways.
8.26ADHD WA and Yellow Ladybugs specifically sought research into ADHD occurrence with Autism and the internalisation of those experiences, to better understand both conditions and how they present. Such research could help determine the impacts on education, and therefore inform most effective strategies for educators.
ADHD in girls, women and gender diverse people
8.27There was widespread support for more research into inattentive presentations of ADHD that can frequently be the experience of girls, women, and gender diverse people. This research may assist in addressing existing bias in assessment, services and research and improve equitable care. Witnesses suggested that, to gain a better understanding of potential gender difference and implement supports that better suit diverse needs, research into the following areas was needed:
how internalising and masking symptoms impacts diagnosis;
the potential role of hormone changes, including pregnancy, breastfeeding and menopause; and
the presence of co‑occurring conditions, such as autism, anxiety and depression, that can complicate and delay diagnosis.
8.28Submitters contended that the lack of research and subsequent awareness of ADHD presentations for girls, women and gender-diverse people had led directly to under and misdiagnosis of ADHD and delayed diagnosis and support (as explored earlier in this report). Evidence further suggested that this has resulted in a limited understanding of the most effective interventions for girls, women, and gender diverse people.
8.29The Royal Australasian College of Physicians (RACP) and the AustralianAssociation of Psychologists Inc. claimed that current diagnostic tools do not account for gender differences and masking strategies, and suggested work needed to be done to develop and promote such tools.
Use of stimulant medication
8.30Health and Aged Care indicated that work is underway with the AustralianADHD Professionals Association to understand what the right medication prescribing regime should be, including to address anecdotal evidence about under and over diagnosis and potential over prescription of medications. Other submitters called for more research to better understand misconceptions regarding the use of stimulant medications.
8.31The RACP and Dr Martin Whitely supported long-term research on the outcomes of ADHD medication use, especially stimulants, that could 'offer valuable real-world evidence in relation to the long-term safety and efficacy of ADHD medications'.
ADHD in First Nations peoples
8.32The committee heard that there is currently little research into ADHD amongst First Nations peoples, including how the perception of behaviour is influenced by culture, and how being a First Nations girl or woman impacts ADHD diagnosis and support, including risks of under-diagnosis. The prevalence of ADHD amongst First Nations peoples is also not well researched and understood.
8.33The Clinical practice guideline and submitters to the inquiry acknowledge that existing diagnostic tools are not well adapted for First Nations peoples, and that norms for ADHD assessment questionnaires and checklists have not been established for this priority group. However, the Clinical practice guideline suggests that adaptation of existing tools was 'likely to be insufficient' and that a specific culturally appropriate tool for diagnosis for First Nations peoples should be considered.
8.34Regarding treatment, there was some evidence suggesting that First Nations peoples with ADHD were less likely to be prescribed stimulant medication, when compared with non-Indigenous people. This indicates that First Nations children with ADHD are undertreated. The Clinical practice guideline identified 'no research on medication treatment for Aboriginal and Torres Strait Islander adults'. The Institute for Urban Indigenous Health (IUIH) called for further research into 'the rate of ADHD diagnosis and stimulant treatment … and … qualitative research to explore Aboriginal perception towards ADHD and stimulant treatment' as a critical component for optimal care.
8.35IUIH also advocated for funding for First Nations‑led research examining ADHD amongst First Nations people within the criminal justice system, and those transitioning into the community. The institutesuggested a specific focus on adolescents and children within the youth justice and child safety systems, including the prevalence within that cohort. IUIH pointed out that appropriate diagnosis and treatment 'of ADHD may prevent recidivism' or future interactions with the justice system, as well as improving outcomes for people with ADHD.
8.36The RACP and the First Peoples Disability Network called for more community-based research into the identification and diagnosis of ADHD in First Nations families, including how better to support their needs, with the latter recommending any such research be 'grounded in principles of Indigenous Data Sovereignty'.
8.37On this point, the National Aboriginal Community Controlled Health Organisation (NACCHO) underlined that Priority Reform Area 4, as part of Closing the Gap targets, is 'sharing data and information to support decision making'. This includes a commitment to share access to 'location-specific data and information (data sovereignty) to inform local-decision making and support Aboriginal and Torres Strait Islander communities and organisations …'.
8.38The First Peoples Disability Network likewise noted the importance of Indigenous data sovereignty and called for a national data scoping project to 'determine the prevalence of ADHD amongst First Nations people'.
ADHD in aged people
8.39Several submitters noted that ADHD in older people is very poorly understood, with symptoms similar to ADHD put down to ageing, rather than ADHD. TheANU Law Reform and Social Justice Research Hub recommended that the Australian Government fund further study and research into differing ADHD symptoms in older Australians (65 years and over), considering this cohort as not well served by existing tools and guidelines.
International models of diagnosis and care for ADHD
8.40As outlined below, a number of submitters responded to the inquiry's terms of reference with regard to international best practice for ADHD diagnosis, support services, practitioner education and cost.
8.41The committee heard that ADHD is diagnosed and supported differently in various overseas jurisdictions, with suggestions put to the committee that there is room for Australia's practices to be informed and improved by these alternatives, where appropriate.
International models and programs
Canada
8.42The Royal Australian and New Zealand College of Psychiatrists advised that the Canadian ADHD Practice Guidelines are an example of international best practice.
8.43The Canadian guidelines, updated in 2020, are aimed at improving the quality of care and outcomes for people with ADHD and include diagnosis and treatment pathways for children, adolescents and adults, as well as considerations of coexisting conditions and other factors. Supports include both psychosocial and pharmacological treatments.
United States
American Academy of Paediatrics clinical practice guideline
8.44Dr Geoff Kewley, Mr Scott Beachley and Mr Chris Brideson drew attention to the American Academy of Paediatrics clinical practice guideline as a further example of international best practice, noting that it 'gives updated guidelines but also looks at the barriers to effective ADHD care provision'.
8.45The American clinical practice guideline provides recommendations for the diagnosis and treatment of children and includes guidelines for diagnosis, evaluation, and treatment. It includes screening for other conditions that may coexist with ADHD and recommends holistic treatments, including medications, parent training and behavioural interventions.
The Incredible Years programs
8.46The Incredible Years programs for children with ADHD are a range of early intervention programs for children and young people, parents and caregivers, and educators. The aim of the programs is to 'promote social, emotional, and academic competence, while also preventing, reducing, and treating behavioural and emotional problems in young children'. Organisations (such as schools, daycare centres, paediatric clinics) send representatives to attend training on the Incredible Years programs and are then used to deliver the program content to children, parents or teachers, with supporting materials provided separately. WA Health informed the committee that the programs have been used successfully internationally to address ADHD in children.
United Kingdom
Dundee ADHD Clinical Care Pathway
8.47Several submitters drew the committee's attention to the Dundee ADHD Clinical Care Pathway (DACCP), developed in the United Kingdom (UK) by Professor David Coghill.
8.48The DACCP takes a multi-modal approach, and positions nurse practitioners and general practitioners (GPs) at the front end of much of the clinical care of people with ADHD. Teams providing care are multidisciplinary with GPs and nurse practitioners working alongside psychiatrists, paediatricians and psychologists. Trained nurse practitioners gather information which contributes to assessment and monitoring of ADHD, and to work with senior medical staff. The pathway is not profession-specific, enabling it to be translated to a range of primary and secondary health care environments.
8.49The committee was told that under the pathway, clinicians routinely measure outcomes and use the results to optimise supports, resulting in 'a dramatic improvement in clinical outcomes', increased access to treatment, and reduced waiting times. According to the AADPA, the DACCP is now being used in clinics around the world.
Attention deficit hyperactivity disorder: diagnosis and management
8.50The Royal Australian and New Zealand College of Psychiatrists pointed to the National Institute for Health and Care Excellence (NICE) 2018 guideline on ADHD as one source of best practice. The guideline covers the recognition, diagnosing and managing of ADHD across all ages.
Evidence guidelines for the pharmacological management of ADHD
8.51The British Association for Psychopharmacology has released consensus guidelines for the treatment of ADHD in children and adults, updated in 2014. The guidelines cover ADHD diagnosis and treatment, including pharmacological treatments and dosages. It also looks at the prescribing of stimulants, and the treatment of co‑occurring conditions (including substance use disorder).
Failure of Healthcare Provision for Attention Deficit/Hyperactivity Disorder in the United Kingdom: A Consensus Statement (UK ADHD Consensus Statement)
8.52In 2021, a group of UK healthcare professionals, ADHD patient groups and educational and occupational specialists met to discuss the shortfalls in ADHD service provision in the UK. This included an exploration of under-diagnosis and its potential causes, system bias, and recommendations for resolving these issues.
8.53The group found that 'cultural and structural barriers operate at all levels of the healthcare system resulting in a de-prioritization of ADHD', and that ADHD services were insufficient. This resulted in calls for more training for professionals who engage with people with ADHD (in particular GPs and practice nurses), increased funding of services, streamlined communication between health services, and improved access to non-pharmacological supports for better outcomes for people with ADHD. In the longer term the UK ADHD Consensus Statement recommended the 'integration of ADHD into broader mental healthcare provision in primary care' to better streamline care and reduce bottlenecks.
Psychiatry UK Adult ADHD Service
8.54The Psychiatry UK Adult ADHD Service provides online ADHD assessment, diagnosis and treatment services by psychiatrists to adults both privately, and through the National Health Service (NHS). Psychiatrists work in conjunction with GPs in a shared model of care (where agreed to with GPs), with nurse-led medication prescription and titration. A referral is not required if people are seeking services through the NHS. Once treatment is stable, the service recommends psychosocial interventions with psychologists, psychotherapists and life coaches.
8.55A recent update to service's website notes that they have temporarily paused new referrals as they are operating at capacity.
New Forest Parenting Program
8.56The New Forest Parenting Program (NFPP) commenced in 1993. It is a home‑based, parent-led program for preschool children. It educates parents and children about ADHD. It is delivered individually with a trained practitioner, in a group setting with other parents, or as guided self‑delivery. The committee was advised that the NFPP has demonstrably reduced ADHD symptoms, and improved parenting practices.
8.57This chapter has examined areas in which further ADHD research is required, ways in which data collection could improve, and examples of international models and programs which Australia could draw on to improve the delivery of diagnosis and support of ADHD. The final chapter will conclude by reviewing the evidence received and recommending how improvements must be made.