Challenges Ahead: (New) Editor’s Note

On January 1, 2016, I took over as Editor in Chief from my highly regarded colleague Dr Johannes Rohan. Johannes has steered the journal for many years and was successful in obtaining an impact factor for it. Despite its controversial nature, the impact factor is an important metric and one that continues to be reflected in academic evaluations.

Since my first published paper (1992, to be precise), the world of peer-reviewed publications has changed dramatically. Not only because of the number of printed journals available, even in a small field such as that of intellectual disability, but also because of the change in publishing traditions. Open access is now an important avenue for aspiring and established academics and is equally valued. Dissemination of the published articles is much wider than the academic press. Regularly, freelance writers and blogging sites will report on research and communicate findings of studies for the lay public to aid public and patient engagement with research. Equally important is the engagement with those commissioning or running services in order to enable them to make the right choices for the population they serve. These aspects are now encompassed by a new term, research impact, which aims to illustrate the wide reach of research outputs which are not simply confined to the academic arena but may have substantial societal and financial benefits.

Efforts to prioritise areas for further scientific enquiry and thus address gaps in research in developmental disabilities have been undertaken recently (Morris et al., 2015; Tomlinson et al., 2014). The consensus findings overwhelmingly show that developing, adapting, and evaluating interventions are top-priority subjects. Key areas feature early intervention, mental and physical health, and inclusion in children with neurodisabilities, but there has not been a similar exercise for adults with neurodisabilities nor is there any mention of pharmacological interventions. Yet psychotropics are prescribed without any evidence for clinical and cost effectiveness in the absence of severe mental illness across the life span (Olfson, King, & Schoenbaum, 2015; Sheehan et al., 2015). The most recent trial of the effectiveness of antipsychotics to have taken place in the UK, with published results in 2008 (Tyrer et al., 2008). However, in the last 10 years, there have been countless trials of medications for various aspects of dementia and for severe mental illness. If indeed, as is argued, the magnitude of the burden of intellectual and developmental disabilities and its comorbidities is equal to that of psychotic disorders (Einfeld et al., 2006), it is not reflected in the state of the evidence base. Where interventions are evaluated, we must ensure that there is consistent measurement of outcomes, e.g., costs, health-related quality of life, adverse events, multicenter evaluations, and replications across several different health and social care systems.

A related aspect to the prioritization of interventions is the introduction of precision medicine in mental health and in developmental disorders. There is already work to investigate biomarkers in order to predict response to both medications and psychosocial interventions (Symons & Roberts, 2013). The efficacy studies of medications for a variety of genetic syndromes, e.g., Fragile X syndrome, Down syndrome, are the starting point for this approach in our field (https://www.clinicaltrialsregister.eu/ctr-search/search). Therefore, we must ensure that the research activity relates to vulnerable populations and that people with intellectual and developmental disabilities benefit from such advances.

Another neglected area is that of delivery of care. In the UK, the term “postcode lottery” describes the variation in available services and care pathways based on location. This is of particular concern to the parents or relatives of children and adults with intellectual and developmental disabilities, as constant battles to receive appropriate and high-quality care affect family life and care-giving ability, and can exhaust the most resilient of constitutions. Understanding organizational barriers, systemic failures, and whether service changes are acceptable to those who use them are important questions to which we only have partial answers. As a research community we need to continue to engage and influence those commissioning services and the policymakers, as well as providing the evidence to back up much-needed policy agendas.

From the privileged position of journal editor, along with the support of the editorial board, we aspire to not to only publish methodologically rigorous research on all aspects of intellectual and developmental disabilities which impact wellbeing, but also, in some measure, to promote debate which shapes the research agenda. We are committed to the promotion of multidisciplinary research which is read widely and is relevant to the lives and experiences of people with intellectual and developmental disabilities. Certainly, we will follow the metrics in terms of journal access, article downloads, and submissions, and we look forward—with your contributions—to further expand the reach and influence of the Journal of Mental Health Research in Intellectual Disabilities.