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Abstract Background Given the increasing recognition of the value of greater integration of physical and mental health services for children and young people, we aimed to evaluate preferences among parents for the characteristics associated with integrated health service provision for two conditions (eating disorders, functional symptom disorders). Methods Two discrete choice experiments (DCEs) were conducted, using electronic surveys. Participants were adult parents of children and young people. Choice scenarios were based on five attributes for the eating disorders study, and four attributes for the functional symptom disorders study. Results Two hundred parents participated in each DCE. For eating disorders, days missed from school in the last year was the attribute valued most highly, followed by days in hospital in the last year, costs to the NHS, functioning, and interaction with peers with eating disorders. Respondents were willing to trade £531 of costs to the NHS for one less day missed from school. For functional symptom disorders, time to diagnosis was valued most highly, followed by days missed from school while obtaining a diagnosis, reservations about seeing a mental health practitioner, and costs of diagnosis to the NHS. Respondents were willing to trade £4237 of costs to the NHS to wait one month less for a diagnosis. Conclusion Respondents’ preferences were largely consistent with the planned goals of integrating physical and mental health services. Our findings show the factors which ought to be considered when designing new integrated pathways and evaluating them.

Abstract Introduction Only a minority of individuals with mental health disorders receive specialist treatment. Low‐intensity psychological therapies, like guided self‐help, have the potential to bridge this global treatment gap. However, a systematic process for developing such therapies has not been proposed. This study proposes a systematic process for developing low‐intensity psychological treatments, exemplified by a low‐intensity Cognitive Behavioral Therapy (CBT) intervention for children and young people with eating disorders. Methods A systematic, three‐step process is presented. Firstly, a common elements analysis is conducted within the three pillars of evidence‐based practice (research, clinical expertise, and patient preferences). Secondly, a coding matrix is used to synthesize the common elements across these three pillars. Finally, patient and public involvement (PPI) feedback is incorporated for intervention refinement. Results Applying this methodology led to the development of an eight‐module, low intensity CBT intervention for children and young people with eating disorders, covering topics such as regular eating, body image, social media, and managing emotional triggers. Conclusion The intervention derived from this novel methodology is evidence‐informed and considers implementation into routine practice from the outset. This systematic approach to developing low intensity psychological interventions holds promise for closing the treatment gap irrespective of therapeutic orientation or disorder.

Plain English summary Feeding and eating disorders can significantly impair health and psychosocial functioning. However, demand for eating disorder services is greater than services’ ability to deliver effective treatment. Low intensity psychological interventions, which are brief in nature and require less therapist input than standard treatments, have the potential to bridge this demand-capacity gap. The current review examined the effectiveness of low intensity psychological interventions for the treatment of feeding and eating disorders. Overall, findings suggest that low intensity psychological interventions can successfully treat eating disorder symptoms, particularly binge eating-related symptoms. Given their relatively low costs and ease of accessibility, such interventions can help people to access treatment at a time when this is so desperately needed. More research is needed to determine the value of low intensity psychological interventions for children and adolescents, and people with feeding and eating disorders that are not characterised by recurrent binge eating, such as anorexia nervosa, ARFID, pica and rumination disorder.

Abstract Background Mental health disorders in the context of long-term conditions in children and young people are currently overlooked and undertreated. Evidence-based psychological treatments for common childhood mental health disorders (anxiety, depression and disruptive behaviour disorders) have not been systematically evaluated in young people with epilepsy despite their high prevalence in this population. The aim of this multi-site randomised controlled trial is to determine the clinical and cost-effectiveness of adding a modular psychological intervention to usual care for the mental health disorders in comparison to assessment-enhanced usual care alone. Methods In total, 334 participants aged 3–18 years attending epilepsy services will be screened for mental health disorders with the Strengths and Difficulties Questionnaire (SDQ) and the diagnostic Development and Wellbeing Assessment (DAWBA). Those identified as having a mental health disorder and consenting to the trial will be randomised to either receive up to 22 sessions of the modular psychological intervention (MATCH-ADTC) delivered over the telephone over 6 months by non-mental health professionals in addition to usual care or to assessment-enhanced usual care alone. Outcomes will be measured at baseline, 6 months and 12 months post-randomisation. It is hypothesised that MATCH-ADTC plus usual care will be superior to assessment-enhanced usual care in improving emotional and behavioural symptoms. The primary outcome is the SDQ reported by parents at 6 months. Secondary outcomes include parent-reported mental health measures such as the Revised Children’s Anxiety and Depression Scale, quality of life measures such as the Paediatric Quality of Life Inventory and physical health measures such as the Hague Seizure Severity Scale. Outcome assessors will be blinded to group assignment. Qualitative process evaluations and a health economic evaluation will also be completed. Discussion This trial aims to determine whether a systematic and integrated approach to the identification and treatment of mental health disorders in children and young people with epilepsy is clinically and cost-effective. The findings will contribute to policies and practice with regard to addressing mental health needs in children and young people with other long-term conditions. Trial registration ISRCTN ISRCTN57823197 . Registered on 25 February 2019.

Abstract Background Children with chronic health conditions and their parents are at greater risk of developing emotional and behavioural problems compared to their physically healthy peers. The psychological impact on parents is crucial to understand given the relationship between parental mental health and child emotional and behavioural difficulties. This study was part of a broader research project examining the acceptability, feasibility and impact of a ‘Mental Health and Psychological Wellbeing Drop‐in Centre’ in a paediatric hospital providing access to support and intervention for children and their families. This paper aimed to investigate the impact of the centre on parents (n = 148). Methods Parental anxiety and depression were assessed using the GAD‐7 and PHQ‐9 at baseline and 6‐month post‐baseline. Child mental health was assessed using the parent‐report Strengths and Difficulties Questionnaire (SDQ). If parents had significant mental health needs, a brief intervention/signposting to relevant services was provided. Results At baseline, 48% of parents scored above clinical threshold for anxiety and 41% for depression, and parent reported child SDQ scores were correlated with parental anxiety and parental low mood. Self‐reported parental anxiety and low mood decreased at 6‐months post‐baseline (parental anxiety: mean decrease = 2.29 [1.22–3.36], d = 0.38; parental low mood: mean decrease = 1.81 [0.64–3.00], d = 0.28). There were no significant correlations between change in parent reported child wellbeing and changes in parental low mood and anxiety between baseline and 6‐month post‐baseline. Conclusions Assessing and providing a brief treatment to address the mental health needs of parents of children with comorbidity may bring important benefits. It is recommended that children's mental health services consider assessment of parental mental health as part of routine care.

Background: Access to Children and Adolescent Mental Health Services (CAMHS) can be difficult, with lengthy wait times. Many of the young people and their parents are not signposted to any form of support during their wait for initial assessment or treatment and people are increasingly turning towards web-based resources for help and advice. However, there are some concerns about the quality of the information shared online. Research on the use and quality of information shared on online platforms for mental health inquiries is limited. Aims: We aimed to investigate the content and quality of the responses shared by forum users on an online forum for parents of young people with mental health needs (Mumsnet ‘Talk’). Forum users were primarily parents, but 8 posts were written by posters identifying as a healthcare worker, teacher, or autism spectrum specialist. Methods: Qualitative methodology was adopted for this study. Forum content from Mumsnet was extracted in an anonymised form and thematic analysis was conducted to explore the content. Information shared in the online forum was assessed for quality by comparing the responses with clinical guidelines. Results: Thread topics related to 16 mental health problems. “Autistic Traits/Autism Spectrum Disorder”, “Obsessions and Intrusive Thoughts/ Obsessive Compulsive Disorder” and “Comorbid Anxiety and Depression” were the most prevalent thread topics, consisting 38.3% of the extracted content. The investigation focused on “Information Offered” as the general dimension. Based on the thematic analysis, there were four second-order themes regarding the information offered by forum users; referral, advice, anecdotal information and opinion on case. The quantitative assessment of responses found that 58.3% of the knowledge exchange on Mumsnet was congruent with evidence-based clinical guidelines. Conclusions: Themes indicate that parents of children and young people with mental health needs seem to use online fora for informational support. It is promising that a significant proportion of the information shared within the extracted forum content is congruent with evidence-based knowledge. However, further investigation is needed to generate better understanding of the overall quality of mental health information available on online platforms.

Abstract Background There is a significant unmet treatment need for children and young people (CYP) with eating disorders. Guided self-help interventions have the potential to expand access to evidence-based treatments. Guided self-help is a type of low intensity psychological intervention where individuals engage with a workbook or online programme, with the support of a health professional. Its primary aim is to equip patients and/or their caregivers with self-management skills. However, little is currently known about the acceptability and suitability of guided self-help interventions for CYP with eating disorders. This study aimed to explore the perspectives of three key stakeholder groups – CYP with lived experience of eating disorders, parents/carers, and healthcare professionals – on guided self-help for this population. Methods Qualitative focus groups and semi-structured interviews were conducted with 11 CYP (aged 13–19 years) with lived experience of eating disorders, 12 parents/carers, and 10 healthcare professionals. The study comprised a total of seven focus groups (including 2 with CYP, 3 with parent/carers, and 2 with healthcare professionals), as well as four semi-structured interviews (including 3 with CYP and 1 with a parent/carer). Discussion topics included past experiences of using/delivering guided self-help, the suitability of guided self-help for CYP with eating disorders, and preferences towards the content, structure and modes of guided self-help. Data were analysed using reflexive thematic analysis. Results Three themes were generated across all three stakeholder groups. Theme one, Bridging the gap, highlighted the role of guided self-help in increasing access to psychological support for CYP with eating disorders. Theme two, Timing matters, considered the suitability of guided self-help for CYP with eating disorders at different stages of illness and the care pathway. Theme three, One size does not fit all, emphasised the heterogeneity of eating disorders and the need for a personalised and flexible approach in guided self-help. Conclusions Findings from this study lay a foundation for the future design and delivery of guided self-help interventions for CYP with eating disorders. Future work must consider these findings in the context of best available research evidence to optimise the potential utility of guided self-help for this population.

Background Behavioural therapy for tics is difficult to access, and little is known about its effectiveness when delivered online. Objective To investigate the clinical and cost-effectiveness of an online-delivered, therapist- and parent-supported therapy for young people with tic disorders. Design Single-blind, parallel-group, randomised controlled trial, with 3-month (primary end point) and 6-month post-randomisation follow-up. Participants were individually randomised (1 : 1), using on online system, with block randomisations, stratified by site. Naturalistic follow-up was conducted at 12 and 18 months post-randomisation when participants were free to access non-trial interventions. A subset of participants participated in a process evaluation. Setting Two hospitals (London and Nottingham) in England also accepting referrals from patient identification centres and online self-referrals. Participants Children aged 9–17 years (1) with Tourette syndrome or chronic tic disorder, (2) with a Yale Global Tic Severity Scale-total tic severity score of 15 or more (or > 10 with only motor or vocal tics) and (3) having not received behavioural therapy for tics in the past 12 months or started/stopped medication for tics within the past 2 months. Interventions Either 10 weeks of online, remotely delivered, therapist-supported exposure and response prevention therapy (intervention group) or online psychoeducation (control). Outcome Primary outcome: Yale Global Tic Severity Scale-total tic severity score 3 months post-randomisation; analysis done in all randomised patients for whom data were available. Secondary outcomes included low mood, anxiety, treatment satisfaction and health resource use. Quality-adjusted life-years are derived from parent-completed quality-of-life measures. All trial staff, statisticians and the chief investigator were masked to group allocation. Results Two hundred and twenty-four participants were randomised to the intervention (n = 112) or control (n = 112) group. Participants were mostly male (n = 177; 79%), with a mean age of 12 years. At 3 months the estimated mean difference in Yale Global Tic Severity Scale-total tic severity score between the groups adjusted for baseline and site was −2.29 points (95% confidence interval −3.86 to −0.71) in favour of therapy (effect size −0.31, 95% confidence interval −0.52 to −0.10). This effect was sustained throughout to the final follow-up at 18 months (−2.01 points, 95% confidence interval −3.86 to −0.15; effect size −0.27, 95% confidence interval −0.52 to −0.02). At 18 months the mean incremental cost per participant of the intervention compared to the control was £662 (95% confidence interval −£59 to £1384), with a mean incremental quality-adjusted life-year of 0.040 (95% confidence interval −0.004 to 0.083) per participant. The mean incremental cost per quality-adjusted life-year gained was £16,708. The intervention was acceptable and delivered with high fidelity. Parental engagement predicted child engagement and more positive clinical outcomes. Harms Two serious, unrelated adverse events occurred in the control group. Limitations We cannot separate the effects of digital online delivery and the therapy itself. The sample was predominately white and British, limiting generalisability. The design did not compare to face-to-face services. Conclusion Online, therapist-supported behavioural therapy for young people with tic disorders is clinically and cost-effective in reducing tics, with durable benefits extending up to 18 months. Future work Future work should compare online to face-to-face therapy and explore how to embed the intervention in clinical practice. Trial registration This trial is registered as ISRCTN70758207; ClinicalTrials.gov (NCT03483493). The trial is now complete. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Technology Assessment programme (project number 16/19/02) and will be published in full in Health and Technology Assessment; Vol. 27, No. 18. See the NIHR Journals Library website for further project information. Plain language summary It can be difficult for children and young people with tics to access therapy. This is because there are not enough trained tic therapists. Online remote behavioural intervention for tics was a clinical trial to see whether an online platform that delivered two different types of interventions could help tics. One intervention focused on techniques to control tics; this type of therapy is called exposure and response prevention. The other intervention was psychoeducation, where participants learned about the nature of tics but not how to control them. The online remote behavioural intervention for tics interventions also involved help from a therapist and support from a parent. Participants were aged 9–17 years with Tourette syndrome/chronic tic disorder and were recruited from 16 clinics, two study sites (Nottingham and London) or via online self-referral. All individuals who were eligible for the online remote behavioural intervention for tics trial were randomised in a 50/50 split by researchers who were unaware of which treatment was being given. Participants received either 10 weeks of online exposure and response prevention or 10 weeks of online psychoeducation. A total of 224 children and young people participated: 112 allocated to exposure and response prevention and 112 to psychoeducation. Tics decreased more in the exposure and response prevention group (16% reduction) than in the psychoeducation group (6% reduction) 3 months after treatment. This difference is considered a clinically important difference in tic reduction. The treatment continued to have a positive effect on tic symptoms at 6, 12 and 18 months, showing that the effects are durable. This was achieved with minimal therapist involvement. The cost of online exposure and response prevention to treat young people with tics within this study was less when compared to the cost of face-to-face therapy. The results show that exposure and response prevention is an effective behavioural therapy for tics in this specific patient group. Delivering exposure and response prevention online with minimal therapist contact can be a successful and cost-effective treatment to improve access to behavioural therapy. Scientific summary Background Tic disorders including Tourette syndrome and chronic tic disorders are common conditions that affect approximately 1% of the population in the UK. Young people with tics often report substantial impairment, thus it is important that they have access to evidence-based treatment. Face-to-face behavioural therapy (BT) such as exposure and response prevention (ERP) may be offered to some young people. However, due to a lack of trained therapists, there are often difficulties accessing BT, and there is a better need to understand the clinical and cost-effectiveness of the online delivery of such therapy. Objectives The primary objective of this study was to evaluate the clinical effectiveness of therapist-guided, parent-assisted, internet-based ERP BT for tics in young people with tic disorders compared to online psychoeducation. Secondary objectives included (1) optimising the design of the intervention, (2) undertaking an internal pilot, (3) evaluating cost-effectiveness, (4) establishing whether the efficacy is maintained longer term, (5) understanding the mechanisms of impact of the intervention and (6) identifying barriers to implementation. Methods We conducted an individually randomised (1 : 1 ratio), multicentre trial, with an internal pilot and embedded process evaluation. Participants were assigned to either receive online, remotely delivered, therapist- and parent-supported ERP for tics or online, remotely delivered, therapist- and parent-supported psychoeducation for tics. Participants were recruited from the two study sites, 16 patient identification centres in England or could self-refer online via the study webpage or via Tourettes Action (a national charity for tics). The inclusion criteria were age between 9 and 17 years, with tics assessed on the Yale Global Tic Severity Scale (YGTSS), able to provide written informed consent (parental consent for children aged < 16 years) and with a suitable device they could use to access the internet. Exclusion criteria included receiving a therapy for tics in the past 12 months, starting or stopping tic medication within the past 2 months and intellectual disability/substance use/anorexia nervosa/psychosis/suicidality, moderate/severe intellectual disability, risk to self or others or parent or young person unable to speak or read/write English. All potential participants attended a screening/baseline appointment at one of the two study centres. Participants who were eligible and consented were randomised into one of two study groups. In the intervention group participants received 10 weeks of the remotely delivered, therapist-guided ERP behaviour therapy. In the control group participants received 10 weeks of remotely delivered, therapist-guided psychoeducation about tics. Participants completed measures at the mid-treatment point (5 weeks) and at 3 and 6 months (this formed phase 1, per-protocol design). For phase 2 (a naturalist design), follow-up measures were obtained at 12 and 18 months. The primary outcome (at 3 months) was the total tic severity score (TTSS) on the YGTSS. Secondary outcomes included measures of tics (parent tic questionnaire), general difficulties (strengths and difficulties questionnaire), mood and anxiety (moods and feelings questionnaire and Spence Child Anxiety Scale), global functioning (Children’s Global Assessment Scale, Clinical Global Impressions-Improvement), adverse events, need for further treatment, treatment credibility and satisfaction and the Child and Adolescent Version of the Gilles de la Tourette Syndrome Quality of Life Scale. Quality of life [child health utility 9D (CHU9D)] and resource use (modified child and adolescent service use schedule) data were also collected for the economic evaluation. Follow-up assessments were completed online or via telephone/Webex videoconferencing (YGTSS). The trial internal pilot evaluated recruitment rate, engagement with the intervention and retention to the primary outcome at 9 months into the trial and the results were reported to the relevant oversight committees (Trial Steering Committees and Data Monitoring Committee). A sub-sample of parents and young people in the intervention arm, clinicians and therapists were interviewed to explore barriers/facilitators to implementation and refine the intervention for future use, which formed part of the mixed-methods process evaluation. The quantitative data for the process evaluation included intervention usage metrics, clinical and demographic trial data and therapist contacts. Intervention The intervention was delivered via Barninternetprojektet (Child Internet Project; Swedish digital platform) (BIP), a Swedish web-based digital platform. The BT intervention (ERP) was translated from the Swedish original intervention (BIP TIC), refined and adapted for UK use by our trial team. The active control intervention (psychoeducation) was created by our trial team. Both interventions consisted of 10 web-based chapters, designed to last 10 weeks. Participants had regular contact with a therapist during this time via messages that could be sent inside the treatment platform (resembling an email). The therapist’s role was to give specific feedback to motivate the patient and not to deliver therapeutic content. The young person and the parent/carer were provided with their own separate logins to the BIP platform. For both the intervention and the comparator, treatment completion was defined as completion of the first four child chapters. Results The trial recruited and retained participants exceeding the pre-specified criteria for the internal pilot and therefore proceeded to the full trial. In total 445 candidates signed up to the study and were assessed for eligibility, of which 221 potential participants were excluded (90 did not meet inclusion criteria, 84 declined to participate and 47 were unable to contact family). This meant 224 participants were enrolled and randomly assigned (1 : 1) to either the ERP BT group (n = 112) or psychoeducation group (n = 112). The characteristics of the two groups were similar at baseline. The enrolled patients were mostly male (n = 177; 79%) and of white ethnicity (n = 195; 87%). Only 13% of participants were receiving tic medication. Adherence to the intervention was good in 99 (88%) of the 112 participants in the ERP group, and 105 (94%) of the 112 participants in the psychoeducation group were classified as treatment completers (i.e. completing at least the first four chapters). Retention to the primary outcome at the 3-month primary end point (90%) and 6-month follow-up (> 80%) was excellent. Retention to the primary outcome measure remained high at 12 months (81% in both arms) and 18 months (> 79% in both arms). The primary analysis showed that participants in the ERP group [16% reduction, standard deviation (SD) 1.1] had a greater decrease in tics than those in the psychoeducation group (6% reduction, SD 1.0) at 3 months (primary end point). The estimated mean difference in YGTSS-TTSS change between the groups adjusted for baseline and site was −2.29 points [95% confidence interval (CI) −3.86 to −0.71] in favour of ERP, with an effect size of −0.31 (95% CI −0.52 to −0.10). This effect was sustained at 6 months, with a mean decrease of 6.9 points (24%, SD 1.2) in the ERP group versus 3.4 points (12%, SD 1.0) in the psychoeducation group. For phase 2, participants in the ERP group continued to have a greater decrease in tics than the control group. The estimated mean difference in YGTSS-TTSS between groups adjusting for baseline and site at 12 months was −2.64 points (95% CI −4.48 to −0.79), with an effect size of −0.36 (95% CI −0.61 to −0.11), at 18 months it was −2.01 points (95% CI −3.86 to −0.15), with an effect size of −0.27 (95% CI −0.52 to −0.02), in favour of the ERP group. In addition, extended follow-up showed those receiving online ERP compared with online psychoeducation had reduced scores for low mood and anxiety at 12 and 18 months and superior tic-specific quality of life, with the largest effects seen at 18 months. The direct cost of the intervention was £155 per person, including £104.57 for the online platform, supervision and training and a mean variable cost of £50.43 per participant for therapist time in the trial. At 18 months, using proxy parent-completed CHU9D responses, there were a mean additional 0.040 (95% CI −0.004 to 0.083) quality-adjusted life-years (QALYs) per participant in the ERP group compared with psychoeducation, with an addition mean cost per participant of £662 (95% CI −£59 to £1384). The incremental cost-effectiveness ratio in the primary analysis was £16,708 per QALY gained from a health and social care cost perspective at 18 months. In the 10-year long-term decision model, online ERP cost £537 less per participant than face-to-face BT and resulted in 0.02 fewer QALYs. Two serious adverse events (SAEs) occurred (hospital attendance due to one ‘collapse’ and one ‘tic attack’), both in the active control psychoeducation group, neither of which were related to the study intervention. The process evaluation found that the ERP intervention was implemented with high fidelity, and participants found the intervention acceptable and satisfactory. Engagement was high, with child participants completing an average of 7.5/10 chapters and 99/112 (88.4%) participants completing the minimum of the first four chapters (the predefined threshold for effective dose). Parental engagement was the only significant independent predictor of child engagement. Improvement in tic severity and overall clinical condition was not moderated by the relationship between demographic or baseline clinical factors and engagement and no mediators were found. However, level of parental engagement was associated with overall clinical improvement, and this relationship was illuminated by the qualitative data. Conclusion Implications for health care The findings demonstrate that online, therapist-supported ERP for young people with chronic tic disorders is clinically effective at reducing tic severity. Therefore, this is an efficient public mental health approach to supporting young people with tics. The intervention can be delivered at lower cost than standard face-to-face BT and may also result in improved service efficiencies, allowing a greater number of young people to access evidence-based care. Future research implications Further ‘field trials’ should be conducted to explore the clinical and service implications of delivering the intervention in real-world settings. Given that online interventions are context dependent, exploring the validity of these findings in different cultures/countries is important. Future research should explore where online, therapist-supported ERP best fits in the tic disorder care pathway and how online and face-to-face therapy can be best combined (e.g. non-responders to online ERP are ‘stepped up’ to face-to-face therapy). Trial registrations This trial is registered as ISRCTN70758207 and ClinicalTrials.gov (NCT03483493). The trial is now complete. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Technology Assessment programme (project number 16/19/02) and will be published in full in Health and Technology Assessment; Vol. 27, No. 18. See the NIHR Journals Library website for further project information.