Optimising Evidence-Based Psychological Treatment for the Mental Health Needs of Children with Epilepsy: Principles and Methods

Epilepsy is one of the most common serious long-term illnesses in young people, with a lifetime prevalence of 1% (Russ et al. 2012). Children with epilepsy are significantly more likely than those without physical health disorders to experience a multitude of severe and chronic mental health disorders including depression, anxiety, attention-deficit hyperactivity disorder and disruptive behaviour disorders (Davies et al. 2003) which affect quality of life (Baca et al. 2011) and potentially impact the epilepsy itself (Hesdorffer et al. 2012). Such mental health difficulties also impair educational attainment, are costly and have enduring effects into adulthood (Fastenau et al. 2008; Murphy and Fonagy 2012). Despite decades of international research and policy guidelines that emphasise the importance of identifying and addressing the mental health needs of youth with epilepsy (Plioplys et al. 2007), and the availability of evidence-based psychological treatments for mental ill-health, their mental health needs continue to be undetected and undertreated (Asato et al. 2014; Ott et al. 2003).

There are a number of potential explanations for the failure of implementation of effective psychological treatments for mental health problems in children with epilepsy. These explanations can be seen at the individual clinician, service and organisational levels. For example, clinicians who are skilled in the treatment of epilepsy are typically medically trained neurologists and clinical nurse specialists; the interventions for epilepsy are predominantly anticonvulsant medications, surgical interventions and device implantations (National Institute for Health and Care Excellence [NICE] 2012). The clinicians delivering psychological interventions are typically psychologists or counsellors with little training in the medical aspects of care. Therefore, many individual clinicians do not have the requisite knowledge and skills to treat both epilepsy and mental health problems. At the service level, services are contracted (and funded) to treat either the neurological condition or the mental health condition. Organisations addressing mental health are often entirely separate from those treating physical health and epilepsy, despite their widely accepted close relationship (World Health Organisation [WHO] 2018). Despite these obstacles, there are many advantages to attempting to integrate psychological treatment into the package of care offered by paediatric epilepsy services. These include improved identification of mental health needs, better access to evidence-based psychological treatment, provision of patient-centred care, avoiding fragmentation of health services, reducing stigma associated with mental health treatment, optimising both mental health and physical health outcomes and strengthening overall health systems (Patel et al. 2013). Integration is needed as psychological interventions targeting the enhancement of health-related quality of life, medication adherence and comorbid mental health symptoms (for example anxiety, depression and disruptive behaviour) have been recommended as part of comprehensive epilepsy care (Michaelis et al. 2018).

Integration of services could be obtained by having a mental health specialist embedded in the team, as recommended for the treatment of diabetes (Young-Hyman et al. 2016) and illustrated by the national ‘Improving Access to Psychological Therapies—long-term conditions’ programme in the UK (McCrae et al. 2015). Although attractive in principle, accessing psychological therapies is often challenging and there are insufficient therapists to meet current demands (Mental Health Taskforce 2016), often resulting in long waiting lists (Smith et al. 2018). An alternative approach is to train existing clinical nurse specialists or neurologists working in epilepsy services with a special interest in mental health to deliver evidence-based psychological interventions. This alternative approach has the advantage of the clinician having expertise in both the physical and mental health aspects of epilepsy and truly being able to deliver a patient-centred approach to optimise health outcomes. However, clinicians are typically extremely busy and may not wish to have additional responsibilities beyond their core practice.

Regardless of whether a mental health specialist is embedded in the epilepsy team or whether existing epilepsy clinicians are trained to deliver psychological interventions, the question arises as to the optimal psychological intervention for children with epilepsy and mental health needs. There are established, evidence-based treatments for the most common mental health disorders that arise in conjunction with epilepsy including depression (Klein et al. 2007), anxiety (Higa-McMillan et al. 2016) and disruptive behaviour disorders (Leijten et al. 2018). Although clinical trials of the effectiveness of these treatments in children who also have epilepsy are sparse, the evidence that does exist suggests similar effectiveness of interventions for children with chronic illness as those without (Bennett et al. 2015; Corrigan et al. 2016; Law et al. 2019; Moore et al., 2019) and therefore existing interventions should be the starting point for addressing mental health needs in young people with epilepsy.

One psychological therapy that shows promise is the Modular Approach to Treatment of Children with Anxiety, Depression or Conduct Problems (MATCH-ADTC) which was created to combine procedures from the evidence-based treatment manuals for depression, anxiety, behavioural difficulties and trauma into one system that can address multiple presenting difficulties (Chorpita and Weisz 2009). The intervention has been shown to be effective in two trials conducted by the developers (Chorpita et al. 2017; Weisz et al. 2012) with the rate of improvement for youths in the modular approach being significantly better than for those in usual care at 2-year follow-up (Chorpita et al. 2013), although there is some other recent indication that it may not be superior to usual care (Weisz et al. 2019). Of critical importance for sustained implementation, there is an excellent, empirically supported supervisory model to accompany the intervention (Weisz et al. 2018) and factors affecting its implementation in routine community settings have been identified (Cheron et al. 2019). Additionally, practitioners were satisfied by the intervention (Chorpita et al. 2015) and continued to use it in routine practice after training and consultation ended (Palinkas et al. 2013; Thomassin et al. 2019). Other psychological treatments for specific disorders, e.g. the Incredible Years Parent Training (Menting et al. 2013) or transdiagnostic approaches (Marchette and Weisz 2017) incorporating evidence-based interventions, could also be candidates for use in children with epilepsy and mental health disorders. However, the ability to address multiple presenting problems is essential for young people with epilepsy who tend to have multiple mental health comorbidities (Reilly et al. 2014). The modularity offered by MATCH-ADTC, accompanied by excellent training and patient materials, led us to conduct a preliminary evaluation of MATCH-ADTC in young people with epilepsy (Bennett et al. 2018). This preliminary work indicated that it is feasible to deliver MATCH-ADTC to this population in a self-help format via the telephone (Bennett et al. 2018) and highlighted the importance of the intervention being delivered flexibly within epilepsy services using a patient-centred approach. However, the preliminary work led to important questions about how best to modify and optimise the intervention for children with epilepsy for delivery within epilepsy services by non-mental health specialists.

The current research aimed to optimise MATCH-ADTC for use in children and young people with mental health needs in the context of epilepsy within routine epilepsy services, using implementation science methods. The objective of this report is to describe the principles of using these methods to modify the intervention with the view that such principles are generalisable to the use of any evidence-based psychological therapy in children with a comorbid long-term condition.

Four related implementation science methods were used to develop a version of MATCH-ADTC delivered via the telephone for use in children and young people with epilepsy that could be implemented within routine epilepsy services. The methods were undertaken concurrently and the process of intervention was iterative by design, with the information yielded by each individual method feeding into the execution and results of the others over the course of one year. This process is documented in Fig. 1.

Together, the four methods identified that the following were required to optimise the use of MATCH-ADTC in children and young people with mental health needs in the context of epilepsy.

In conclusion, the multiple methods indicated that the interventions within the standard psychological treatment were largely suitable for use in a paediatric epilepsy service once the language had been anglicised and epilepsy relevant examples incorporated when possible, consistent with good clinical practice and flexible and personalised use of manuals (Hamilton et al. 2008). A clear model for training and supervision to ensure successful implementation by non-mental health specialists also emerged. This model, in conjunction with ensuring appropriate practical organisational support including time and technology resources, is likely to be important for overcoming some of the service and organisational barriers in implementation of evidence-based mental health interventions within physical health services in general. Our modified intervention will now be evaluated in a large, randomised controlled trial within epilepsy services (Trial Register number ISRCTN57823197).

The methods used in this study—literature review, focus groups with patients and practitioners, PDSA cycles and qualitative interviews—were complementary and generalisable and could be used to facilitate the implementation any psychological intervention (particularly modular ones), for young people with mental and physical health needs. The findings indicate that clinicians can be reassured that standard protocols can be applied and modified, if necessary, with appropriate input from colleagues, patients and the broader literature. Such an approach will hopefully facilitate increased use of these standard protocols for children with chronic illness whose mental health needs are currently being neglected.