Digital health interventions with healthcare information and self-management resources for young people with ADHD: a mixed-methods systematic review and narrative synthesis

This review aimed to find interventions for young people aged 16–25 years. Studies were included if it was reasonable to assume that at least one participant was within the target age range. The assumption that at least one participant from any group was within the age range was determined by the upper and lower limits of mean age +/- standard deviation. The population of included studies were required to have ADHD, as defined by the authors of each study. Studies were included if the population had co-morbidities, and studies where the main population did not have ADHD were included so long as results for a subsample of the population with ADHD were presented separately.

Studies targeting parents of young people with ADHD were excluded unless the young person also participated.

Studies investigating DHIs aimed at informing, educating and providing self-management resources/strategies for young people were included. Relevant healthcare information could include details of local care pathways or medication, living with ADHD as a long-term condition or experiences and stories from other people with the condition. DHIs for management or self-management for ADHD could include medication monitoring and reminders, psychoeducation, and DHIs which aim to reduce symptoms of common comorbidities such as mental health conditions or substance use.

Non-interactive healthcare resources and resources without a focus on health, for example, educational aids or classroom management, were excluded. Interventions which aimed to improve core symptoms of ADHD through neurocognitive training of neurological components such as reaction time, processing speed and visual-motor control, without any self-management or informative element, were excluded. Similarly, neuro- and bio-feedback interventions were excluded unless they explicitly stated that they include healthcare information or self-management components. To be deliverable in a UK primary healthcare setting, interventions which required clinician engagement for individual patients were excluded.

Studies which use any measure of effectiveness, acceptability, or participant engagement were included. Qualitative studies were included where participants are asked about their experiences of an intervention. Provided the intervention is designed for use by 16–25-year-olds, the outcome measures may be reported by any stakeholder, including young people, their supporters, or clinicians.

All comparators were considered, including usual care. Due to the anticipated methodological heterogeneity, we considered studies that used no comparator group.

Study protocols and development workshops/studies were excluded unless the development study produced a prototype intervention which was tested with stakeholders. Forward citation searching of protocols and development studies was performed to check whether results had been published since publication of the protocol.

Studies had to be reported in English, as time and resource constraints did not allow for translation of non-English texts. Included records had to be conducted within any high-income countries as defined by the World Bank list to ensure they were relevant to a UK healthcare setting [30]. Included articles had to be published since the introduction of the Health and Social Care Act in 2008, as the introduction of the Act resulted in changes to services for patients, and due to the rapidly evolving nature of digital technologies it is unlikely that DHIs developed prior to this would remain relevant to. Grey literature and conference abstracts were excluded. For a summary of the eligibility criteria of papers, see Table 1.

Findings from the RCTs identified in this review suggest that psychoeducational DHIs are likely to reduce ADHD symptom severity, with clinically meaningful results [39‐43]. This ties in with some research which demonstrates the effectiveness of some psychoeducational DHIs for the mental health of young people more broadly, although mixed evidence here suggests that the exact components and factors which illicit an effect require more investigation [67, 68]. There is also preliminary evidence which suggests that symptom monitoring using EMA, or wearable tracking devices, such as StopWatch or the FitBit Flex app, may help to reduce ADHD symptom severity [50‐52]. For young people entering adulthood, gaining insight into their activity levels, and fluctuations in their ADHD symptoms may be an important aid for developing independence and learning to self-regulate and manage living with ADHD as a long-term condition [69]. Several ongoing trials are developing and trialling the promising field of symptom and activity tracking symptom as an aid to ADHD management [70, 71]. This review also found preliminary evidence indicating that SMS-based Medication Reminders may help with ADHD medication adherence [53, 54]. Improving adherence is a high priority, as ADHD medication is effective, reduces the risks of negative outcomes, and alongside non-pharmacological support can improve long-term management of ADHD [9, 10]. However, reducing systematic barriers to accessing medication should also remain a priority, as patient-facing DHIs will not overcome barriers such as medication shortages and long wait times [14]. It is also important to consider other unmet needs in mental health provision for young people with ADHD, beyond improving symptom severity and medication management. While this review focussed on health-related outcomes, and most DHIs included focussed only on symptom severity or medication adherence, there is growing recognition of the need to broaden the scope of interventions to address psychosocial aspects of care [72, 73]. Research highlights the importance of addressing unmet needs during transitional periods with treatment that goes beyond medication, such as interventions which focus on strengths and recovery [73, 74]. Future research should explore the integration of these approaches with DHIs identified in this review to enhance their relevance for young people and produce holistic interventions.

Current UK evidence shows a higher-than-expected rate of discontinuation of medication in young people aged 16–25, therefore interventions to address this are a priority [75‐77]. No evidence was found on the effectiveness of providing healthcare & self-management information alone on ADHD symptoms, in line with previous recommendations about the organisation of ADHD services [78]; although, every identified psychoeducational intervention provided this as part of their delivery [39‐45, 47, 48, 55, 59]. As reflected in UK guidelines, research shows that healthcare information forms an important part of treatment and management of ADHD [12], however challenges with regulation of attention for young people with ADHD may mean that a theoretically informed approach, such as CBT is needed for this to have a positive impact [64]. This review did not find any evidence on whether provision of information alone (without psychoeducation) has a positive impact on ADHD symptoms in this age group. Assessing effectiveness of healthcare information alone is a priority as, if effective, provision of co-designed and accessible evidence-based healthcare information, like that provided on the IUEVO website [46], could represent a low-cost and scalable adjunct to usual care. Included studies used varied methods and incorporated a range of validated and un-validated measures, usually appropriate for their intended purpose. However, heterogeneity in study design and overlap between intervention categories mean there is not yet sufficient data to conduct a meta-analysis of RCT findings, or a robust evidence-base with which to determine the most effective intervention category or component.

Despite the identification of relatively few RCTs, a body of evidence was identified regarding the feasibility and acceptability of different types of DHIs for young people with ADHD, including usability and engagement data, which will be crucial for informing future development. Qualitative evidence on the overall acceptability and usability of DHIs was satisfactory, and in most cases when asked, participants stated a preference for DHIs over non-digital alternatives. Interventions developed using participatory methods (MyADHD) or co-design (IUEVO) provided the strongest evidence of usability, user-engagement, and acceptability [46, 59].

DHIs for symptom monitoring showed positive or moderate engagement, and positive acceptability, implying a potential for further development of these intervention types [49‐52]. Research focussed on practical tools, SMS-based Medication Reminders, evidenced positive engagement from participants [53, 54]. Further research could explore other DHIs with practical tools to support self-management of ADHD, such as digital checklists to use in GP appointments as recommended by young people in MAP co-production work. Such intervention components are currently being developed by Sleath et al. [79, 80]. Findings from this systematic review and previous co-production work suggest that interactive elements of DHIs need to be carefully designed, working collaboratively with stakeholders, including young people with ADHD, to increase acceptability or engagement. It remains unclear whether all the suggested interactive elements should be a priority in the future development of DHIs.

One potential way of increasing engagement can be the use of SMS reminders. However, mixed evidence of SMS reminders on adherence to interventions was identified. No effect on adherence was found when used with the MyADHD app, but there was preliminary evidence of increased adherence with pharmacological treatment [44, 53, 54]. Despite limitations to the treatment adherence study, such as the use of prescription refills as proxy measures of adherence and a lack of long-term follow-up [53, 54], further exploration of the potential of co-designed reminders to improve engagement is indicated.

Another DHI component that might increase engagement and acceptability, is the use of conversational agents, or Chatbots, which use natural language processing to present psychoeducational content in optimal formats for patients [81]. Two included studies used Chatbots, with preliminary findings indicating reduced ADHD symptoms (though no better than conventional delivery) and variable evidence of acceptability [43, 48]. Mixed evidence in relation to interactive and text-messaging based adherence strategies suggests that they may not improve the overall benefits experienced from internet-based psychoeducation. This would benefit from further research,

A common limitation to DHIs was the unintuitive design of the user interface, conversational flow of Chatbot elements, or limited user engagement [43, 48, 51, 52]. Graphics and visuals used need to be up-to-date and appropriate for young people [51, 52]. Contrary to findings from Shelton et al.’s study, research also suggests that young people have a preference for personalised interventions and highlighted that emphasising strengths is a key priority of young people with ADHD [55, 73]. Therefore, designing DHIs with features which can be tailored to the individual, and which move away from the deficit model of care to increase engagement, and acceptability should be investigated. As DHIs progress at pace, including the development of components to facilitate engagement, such as conversational agents, wearable trackers, and SMS messaging, user-centred research will be important to optimise promising elements and address gaps in the evidence-base.

Improvements in usability scores of MyADHD following iterative refinement highlight the importance of optimising DHIs to the target population. Mixed evidence of feasibility for other interventions, this underlines the importance of including young people with ADHD in the development of DHIs and ties in with research showing that people with ADHD ask for, and prefer resources developed with people with lived experience of neurodiversity [82, 83]. Any intervention aiming to provide healthcare information and self-management resources for young people with ADHD needs first to engage their attention, be designed to be user-friendly for ‘ADHD brains’, and then find ways to promote continued engagement [82, 84]. Young people with ADHD can be particularly challenging to engage, due to organisational and attentional issues associated with having ADHD [5], so finding ways to increase engagement and usability (e.g. through co-production) is key for developing effective DHIs for this group. In addition, the evidence identified here fails to recruit diverse populations of young people with ADHD, with fewer than 20% of total participants belonging to minority ethnic groups. With systematic reviews highlighting the importance of developing culturally sensitive DHIs and interventions suitable for linguistically, socioeconomically and digitally marginalised young people [85‐87], future research must focus on factors which may affect engagement with interventions for youth from minority backgrounds.

The results presented above suggest that DHIs which provide psychoeducation may be effective in reducing ADHD symptoms. However, included evidence does not specifically focus on the needs of people aged 16–25, or UK primary care settings, therefore findings should be interpreted with caution. This review did not find research evidence that DHIs providing self-management resources are more effective than pharmacological treatments. However, in line with UK guidelines, digital self-management resources may provide a useful adjunct to usual care for young people during the vulnerable life-stage of transition into adulthood [12], especially where access to ADHD healthcare in the UK remains limited [14, 20]. Research to support integration of DHIs to improve access to care for young people with long term conditions such as ADHD into general practice in the UK needs to be a priority [88]. Especially given NHS plans to redesign services and offer online solutions as a first port of call for support [28]. Barriers to implementing DHIs, such as clinician awareness and variable signposting of interventions will also need to be addressed as part of working towards digital inclusion [20].

To progress this promising field, research needs to build on evidence identified in this review, particularly the development of the MyADHD app in Norway. Use of co-production methods with patients and clinicians from start to finish [89], clear methodological reporting, and using validated ADHD measures which triangulate self-report with clinical ratings where possible, is desirable. Future UK research needs to incorporate methodical intervention co-development, feasibility testing and evaluation, and trials of intervention components to aid engagement and effectiveness, with a clear focus on the unique needs and preferences of young people with ADHD, including those from minority backgrounds. Prioritising acceptability, usability and engagement will be critical to ensuring any DHIs designed for use in the UK are deliverable and can be implemented in primary care settings.

A rational and strategic approach to addressing gaps in the evidence base is needed. For example, prioritising evaluation of the impact of healthcare and self-management information provision alone on ADHD management, then incorporating this content into engaging and effective psychoeducational DHIs. Also collaborating with colleagues nationally, perhaps through the recently established NHS England Taskforce [90], to rapidly share learning. It is essential to streamline development and delivery of DHIs to enhance current delivery of healthcare for ADHD in the UK, which is in crisis [91]. As this field progresses, and the evidence builds, future systematic reviews will be able to conduct risk-of-bias assessments of trial evidence and provide meta-analyses of evidence of effectiveness in relation to ADHD symptom severity.