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Section 8

Considerations – Research

Areas for further investigation

The GDG identified numerous areas for research, including evidence gaps relevant to the care of people with ADHD. This included gaps in the areas of screening, co-occurring disorders, pharmacological and non-pharmacological interventions, and emerging approaches such as ADHD coaches and peer support. A lack of research in subgroups was also noted including adults, older adults, girls and women, Aboriginal and Torres Strait Islander peoples, people from different cultural and ethnic backgrounds, migrants, people with co-occurring substance use disorders and imprisoned people.

There is also a lack of research regarding models of care within the Australian context, and in particular, shared care models between primary and secondary care. There is a lack of research on how to best support children and adolescents with ADHD in Australian schools.

Understanding evidence gaps and identifying research priorities will require significant future research using a structured approach. The involvement of people with a lived experience of ADHD in all aspects of the research process is essential.

The following selected examples of required research topics illustrate the breadth and depth of research that is needed in Australia to attain the goal of providing evidence-based care for individuals with ADHD.

Further Investigation Of Non-Pharmacological Treatments

Future research examining the efficacy of non-pharmacological supports for individuals with ADHD should examine outcomes beyond ADHD symptom severity, including health-related quality of life, self-esteem, and positive coping strategies. Evaluation of interventions needs to include appropriate time points to measure outcomes so that magnitude, interactions and timing of benefits are ascertained.

Research gaps include:

  • a better understanding of the numerous disorders that co-occur at high levels with ADHD, their prevalence and impact on optimal treatment and support, as well as training and awareness for those involved in their care
  • cost-effectiveness comparisons of lengthier versus shorter parent/family training protocols and other treatments
  • effectiveness of novel interventions to support pre-schoolers with ADHD in early childhood settings
  • efficacy of different types of parent/family training (there are a number of different approaches) to ensure that parents are provided with the best method for the shortest investment time
  • identification of optimal timing of parenting/family training and/or cognitive-behavioural interventions relative to diagnosis and other pharmacological and non-pharmacological interventions
  • whether there are benefits of directly delivered cognitive-behavioural interventions for children and adolescents, in addition to parent/family training
  • acceptability and adherence of mindfulness components of some cognitive behavioural interventions, along with whether these change effect sizes found in adult studies utilising mindfulness-based cognitive therapy
  • further study into the effectiveness of cognitive training and neurofeedback for treating symptoms and functional outcomes in ADHD

Further Investigation Of Pharmacological Treatments

Research gaps include:

  • the optimal combinations of treatments in adults
  • optimal treatment when co-occurring substance use disorders (and other common conditions) are present in adults
  • whether the doses currently subsidised by the Australian Pharmaceutical Benefits Scheme (PBS) are appropriate
  • understanding what proportion of people achieve optional ADHD symptom remission with medication doses equal to, or below, the manufacturer’s maximum dose recommendations
  • understanding what minimal side effect medication doses are required to achieve optimal symptom remission and what proportion of people do not achieve remission with this dosage
  • understanding the potential benefits of stimulant medication in adults over 65 who have ADHD, and whether anticholinergics prescribed for dementia help with ADHD symptom reduction in older people with ADHD
  • exploration of children and adolescents taking more than two different medications to treat ADHD and/or co-occurring conditions
  • long-term studies of the efficacy of stimulant treatment in children and adolescents
  • further investigation into the loss of efficacy of stimulant medication over time in people with ADHD
  • development of a national system to unify prescribing of stimulant medications, rather than the current state-based system.

Longitudinal And Strengths-Based Research

Research gaps include:

  • prospective and longitudinal studies of ADHD patients as they transition through adolescence and into adulthood
  • research using a strengths-based approach to support individuals with ADHD and their families
  • evaluation of optimal care pathway models for improving outcomes for ADHD across the lifespan.

Further Exploration Of Subgroups

Research gaps include:

  • development of culturally and psychometrically valid assessment instruments for Aboriginal and Torres Strait Islander peoples and those from culturally and linguistically diverse groups
  • an understanding of the impacts of the menstrual cycle, pregnancy, birth, breastfeeding and menopause on girls and women with ADHD including optimal treatment.

Further Investigation Of Shared Care Models And Economic Factors

Research gaps include:

  • further research into models of care within the Australian context, particularly shared care between primary and secondary care, for the assessment and treatment of ADHD
  • evaluation of the clinical effectiveness of models of care that emphasise regular assessment of symptom change/improvement over time (for example, measurement-based care approaches
  • assessing the human and economic cost of failure to support and treat people with ADHD.

Without a formal process, it will not be possible to prioritise these possible research activities in a way that is of greatest relevance and benefit to the ADHD community. Prioritisation of research activities should include all relevant stakeholders, including those with a lived experience of ADHD. Ensuring evaluation of the potential research impact should be included in this process.

Recommendations

Clinical considerations for implementation of the recommendations

This ADHD guideline has identified multiple areas of unmet need or areas where the research base does not permit evidence-based recommendations to be made. Future research into the causes, treatments and ways to support individuals with ADHD should employ participatory research principles to ensure that those with a lived experience of ADHD are engaged in the research process at each step.

Establishing research priorities will require dedicated funding and input from multiple stakeholders, particularly those representing identified high-risk populations and those with a lived experience of ADHD. Research conducted subsequent to the prioritisation exercise will require dedicated investment.

Wherever possible, ADHD research should be inter-disciplinary, cross-sectoral (involving representatives from private and public health systems) and include Aboriginal and Torres Strait Islander peoples and employ quantifiable outcome measures of ADHD symptoms alongside those of general functioning, disability, quality of life, and participation.