Defining and Characterising a Model of Care for the Assessment, Diagnosis and Management of Tic Disorders in Children and Young People: A Delphi Study

preprint OA: closed
Full text JSON View at publisher
Full text 120,102 characters · extracted from preprint-html · click to expand
Defining and Characterising a Model of Care for the Assessment, Diagnosis and Management of Tic Disorders in Children and Young People: A Delphi Study | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Defining and Characterising a Model of Care for the Assessment, Diagnosis and Management of Tic Disorders in Children and Young People: A Delphi Study Jaxon Kramer, Leanne Makarem, Mike Jackson This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4835394/v2 This work is licensed under a CC BY 4.0 License Status: Posted Version 2 posted You are reading this latest preprint version Show more versions Abstract Background The prevalence of Tic Disorders (TD) in Children and Young People (CYP) approaches 3%, indicating TD to be more common than previously believed. However, in the United Kingdom, access to National Healthcare Services (NHS) with a remit for the assessment, diagnosis and management of TD in CYP remains severely limited. The present study aimed to build consensus among healthcare experts to define and characterise a realistic service model of care with a remit of assessing, diagnosing, and treating TD in CYP; and to identify potential obstacles and facilitators to establishing and implementing this service model. Methods A panel of experts ( N = 10) participated in a three-round e-Delphi study. All surveys were completed online. In Round 1, experts provided free-text responses to 7 open-ended questions. Researchers qualitatively processed responses and generated 28 statements which comprised the Round 2 survey. Participants rated statements on relative agreement and/or importance, items that reached consensus were not included in subsequent survey. Controlled feedback of individual and group responses was displayed for participants in Round 3. Results Expert consensus was gained on statements pertaining to; service configuration, constraints and obstacles to service development and delivery, age-range and duration of service input, and interventions for service to offer. A ranking hierarchy identifying prioritised professional roles for newly commissioned services was created. Conclusions The present study successfully built consensus among healthcare experts for a specialised NHS service model of care for the treatment of TD in CYP. Findings included identifying potential aids and barriers for implementation and highlight the importance of multi-disciplinary team-working and integrated care. Importantly, the present study further emphasises the need for the systematic development of clinical guidelines for TD by the National Institute of Clinical Excellence (NICE). Tics Tic Disorders Tourette Syndrome Children Young People Delphi Study Figures Figure 1 Figure 2 Figure 3 Background Chronic Tic Disorders (TD), such as Tourette syndrome (TS), are non-curable neurodevelopmental conditions characterized by sudden, persistent, purposeless motor movements, or vocalizations known as tics ( 1 ). TD typically have an early onset in childhood, peak during early adolescence and fluctuate in both frequency and severity over time. ( 2 ) The prevalence of TD in Children and Young People (CYP) under the age of 18 approaches 3% globally, indicating TD to be more common than previously believed; with prevalence rates in the United Kingdom (UK) that come close to matching those of Autism Spectrum Condition in school-aged children ( 3 ). However, NHS services with a remit for the assessment, diagnosis and management of TS and TD in CYP remain severely limited. Empirical evidence has consistently shown that physical and behavioural symptoms of TD in CYP contribute to stigma and social discrimination, poor health outcomes, overall reduction in quality of life (QoL), poor self-esteem and decreased motivation to seek help ( 4 ). Adverse outcomes have also been shown to continue into adulthood, with individuals enduring significant rates of exclusion, not just interpersonally but on a more global level, including life domains such as employment, education and healthcare ( 5 ). Early diagnosis and basic intervention such as psycho-education have been shown to have a significant, positive and protective influence on self-perception and QoL in CYP that extends into adulthood ( 6 ). However, these benefits cannot be gained without access to informed and reliable specialist healthcare services and professionals. The processes involved in the assessment, diagnosis and management of TD are known to be complex and difficult to navigate in the UK and within the NHS ( 7 ). Patients and parents of CYP with TD describe many primary care health professionals being unfamiliar and/or uninformed about tics, leading to delays in obtaining an assessment and reliable diagnosis ( 8 ). Individuals in the UK face significant geographical and systemic barriers to accessing care, with only a handful of specialist services in England, and no specialist services or care pathways in Wales and Scotland. Moreover, there is significant variation in how care is being delivered to CYP with TD across the UK; particularly in the structure of service delivery models (i.e., standalone services vs integrated care pathways) and types of support they provide service-users ( 9 ). Data from a recent international survey of health care services available to patients with TD provided evidence that highlights the concerning state of service provision for this population within the UK ( 10 ). Out of all the surveyed countries, the UK revealed the longest wait times at 3–6 months only after a referral to a specialist service had been made. Only eight specialists, (described as clinicians whose practice included more than 60% of patients with tics) were identified in the UK; and patient respondents in the study reported enduring a long and arduous process before receiving a diagnosis. These results highlight the need for substantial service developments; but there is a lack of clarity over what form and structure this should take ( 10 ). Debates have been held in both the UK Parliament and Welsh Senedd during 2022, highlighting the urgent need for specialist services aimed at providing assessment, diagnosis, and care for CYP with TD. The Welsh Government (2022) published a written statement announcing their decision to make an additional £12 million available to support a new national improvement programme for neurodevelopmental conditions ( 11 ). They specifically stated that their “aim is to build on these foundations to ensure equity of services and support for people with other neurodevelopmental conditions, such ADHD and Tourette’s Syndrome” ( 11 ) These recent decisions along with the NHS Long-term Plans for England ( 12 ), Scotland ( 13 ), and Wales ( 14 ) highlight the present time as a critical juncture in which collaboration and integration are prioritised in respect to healthcare service development and delivery. Despite repeated requests and significant efforts made by Tourettes Action UK, healthcare professionals and the general-public, there remains an absence of national clinical guidelines; with the National Institute for Clinical Excellence (NICE) denying the latest request for their development this year. When considering the current need for specialist services for CYP with TD in the UK, the lack of national clinical guidelines means there are substantial uncertainties over service configuration, funding arrangements, operational structure, interventions and barriers and facilitators to service implementation. Through expert consensus, the present study aimed to: (a) identify elements which define and characterise a realistic NHS service model with a remit of assessing, diagnosing, and treating TD in CYP, and (b) identify the potential barriers and facilitators to establishing and implementing a service model. Methods Delphi Method The Delphi method is a systematic process of gaining consensus from a panel of experts in a particular field who anonymously participate in a series of iterative rounds of survey data collection and controlled feedback ( 15 ). The Delphi method was originally developed by the RAND Corporation during the Cold War ( 16 ) and has since been established as a reliable research method in gaining expert consensus to answer complex questions ( 17 ). The Delphi method has been applied in many domains of healthcare research, such as: healthcare-related interventions, the formation of clinical and best practice guidelines ( 18 ), and development and improvement of healthcare services and models of care ( 19 – 21 ). Study Design The present Delphi study consisted of three survey rounds. In line with current best practice guidelines for conducting and reporting Delphi studies ( 22 ), specific decision criteria were defined a priori . Consensus was defined as being gained when the percentage of agreement among experts reached 70%, which generally exceeds thresholds from other studies employing similar sample sizes and scales ( 23 ). Non-consensus was defined as failure to reach consensus after each round. The stopping criteria was operationalised as the completion of three rounds or if all items met consensus. Criteria for dropping items from survey rounds was defined as being satisfied only if consensus on an item was reached, or if there was more than one item addressing the same statement (e.g. two different statements on what the service age limit should be) and one reached consensus; that item and its alternatives would then be dropped. Surveys allowed participants to recommend the inclusion and/or adjustment to the wording of statements. A criterion for this was also defined a priori, requiring at least two similar suggestions for the adjustment or adding of items into a subsequent round. Expert Panel Experts ( N = 10) were defined as eligible if they met either of the following criteria: Professionals who practice in the UK and have been working clinically (with dedicated/protected clinical time allotted to work involving TS/TD populations) for more than five years. Professionals who have been listed as an author in at least 5 peer-reviewed publications in the field of TS or TD. Experts were recruited through the following sources: Tourettes Action (leading UK charity), TS clinical guidelines, service and policy steering groups organised by the Centre for ADHD and Neurodevelopmental Disorders at University of Nottingham, an advert posted to and shared on Twitter and LinkedIn, as well as snowball sampling (experts identified by other participants). Once potential participants emailed the researcher, they would be provided with a participant information sheet and informed consent document; which they signed and returned electronically. The 10 experts recruited in the present study were primarily clinical; with 9 meeting inclusion criteria in group a, and one meeting the criteria in group b. Everyone who was identified as meeting the eligibility criteria accepted the invitation to participate. Data Collection Data was collected from three Delphi survey rounds over a nine-week period between February 2023 and April 2023. The duration for each round was three weeks in total, with the first two weeks allocated to participants and the final week to researchers for analysis and aggregation of responses used in the development of surveys for subsequent round. Surveys were developed and tested by researchers prior to administration, as well as disseminated and completed by participants online using JISC Online Surveys platform ( www.Jisc.ac.uk ). Anonymity of participants and their responses were protected through allocating participant numbers, and custom links for each survey round were emailed to each expert through Jisc. To minimise attrition, the landing page for each round displayed the closing date (i.e. deadline) in large, bold, red font. Personalised reminders for completion were also sent through JISC at two time-points (seven and three days from closing date). Round 1 Survey The first survey opened with a participation information page outlining in detail what each Delphi round would entail, as well as the content from the participant information sheet. Delphi methodology used in healthcare research varies, some researchers endorse conducting literature reviews and constructing surveys for the first round accordingly ( 24 ). However, others suggest that using open-ended questions in first round Delphi surveys allow participants to express their own views on an issue, facilitating information gathering which extends beyond what is available in the literature ( 25 ). Additionally, this approach simultaneously prevents bias from being introduced to the study by researchers imposing their own views on participants ( 26 ). Whilst both are widely recognised as acceptable approaches, the present study’s first round survey was comprised of seven open-ended, free-text response questions (Table 1 ). The rationale for utilising open-ended questions in the first round is consistent with the present study’s background and aims; as well as being influenced in part by the paucity of existing empirical evidence, which would be needed for data in order to reliably develop a structured questionnaire. Using experts' practical experience to design subsequent surveys through open-ended responses enriched the current study's findings; in that they reflect the current state of affairs (i.e. NHS constraints, policies, etc.) and relevant clinical implications. The Round 1 survey questions (Table 1 ) were informed by the principles developed by the National Institute for Health Research (NIHR); which is widely used in the process of designing, implementing and evaluating new NHS models of care ( 27 – 28 ). Participants were instructed to answer each question as fully as possible with explanatory detail; whilst also clarifying that they were not expected to “write an exhaustive report.” Table 1 Open-ended Questions Presented in Round 1 Delphi Survey 1. What kind of service structure (e.g., stand-alone, specialised care-pathway) would you recommend as being best-practice for this population? What would be the main arguments to support this recommendation? 2. What are the potential constraints/obstacles for implementing this service structure? 3. What should be the age constraints for this service? 4. What occupations/Roles should be involved in delivering services? 5. What types of interventions should this service offer? 6. What are your views on the duration this service should provide input for? 7. Are there other questions/issues/areas that you feel should be addressed which aren’t covered in the items above? Round 2 Survey The Round 2 survey contained a total of 28 statements generated following qualitative processing (see Data Analysis for further detail) of the collective responses from experts in Round 1. Themes that arose for these statements were in line with the principles found in the NIHR (2019) framework, such as: Service Configuration, Constraints and Obstacles to Service Development and Delivery, and Operational Structure of Service Model. For items 1–18, participants were asked to rate their level of agreement with a statement using a 5-point Likert scale (1 = Strongly Disagree, 2 = Disagree, 3 = Neither Agree nor Disagree, 4 = Agree, 5 = Strongly Agree). Participants were also provided with an “Other” option, enabling them to respond with a free-text answer if they felt a statement needed adjustment or further clarification. Allowing the option for free-text response has been shown to significantly enhance the quality and relevance of survey content in Delphi studies ( 29 ). For items 19–28, participants were presented with a list of professional roles identified in Round 1 responses and asked to rate their essentialness to delivering the respective service using a 3-point Likert scale (1 = Not Required, 2 = Desirable, 3 = Essential). Round 3 Survey The Round 3 survey was comprised of 12 items which did not gain consensus in the previous Round. Based on expert feedback from the previous round, the first statement regarding service configuration was adjusted, and experts were asked to choose the structure they would recommend. Round 3 surveys were individually personalised for each participant in order to facilitate controlled feedback, which is considered an essential component in Delphi research methodology ( 30 ). For each statement, participants were presented with an image displaying their previous response (e.g. in Round 2), alongside the average percentage of responses from the group shown in parentheses. This provided experts with the opportunity to compare, consider, and adjust their response if desired; often bolstering the consensus finding process through the convergence of opinions ( 31 ). Data Analysis Qualitative Content from the free-text responses in the Round 1 survey were independently read and analysed by the first and second authors separately. For each question, researchers read through each participant’s response, highlighted the frequency, order or intensity of occurrence of words, phrases or sentences, and assigned them to emerging categories. Categories which were similar in meaning were combined into a single statement. Categories and subsequent statements were validated through the following process: both researchers discussed their findings i.e., the characteristics and overall meaning of each category, establishing agreement that categories accurately reflected participants’ responses and that each statement accurately reflected the categories they subsumed. All statements generated from this process and included in the Round 2 survey required full agreement between researchers. Quantitative Percentage of agreement on Likert-scale rated items in Round 2 and Round 3 was calculated through Jisc Survey Software. The 5-point Likert scale data was trichotomised into 3-points; with disagree representing “1–2,” neither agree nor disagree remaining, and agree representing “4–5.” Numerical values were given to responses (1 = Not important, 2 = Desirable, 3 = Essential) and summed in order to create a ranking hierarchy identifying prioritised professional roles for newly commissioned services. Results A flowchart (Fig. 1 ) was created to illustrate each stage and their respective outcomes of the present study’s Delphi process. Delphi statements and their consensus outcomes were organised based on their respective themes and reported in the results (see Tables 2 – 5 ) In Round one, ten participants were invited with 100% completing the survey comprised of 7 open-ended questions. In Round 2, ten participants were invited and 100% completed the survey comprised of 28 statements generated from Round 1 free-text responses. In Round 2, consensus was gained on 15 out of the 28 statements (53.57%) while 13 items failed to gain consensus (10 of which related to essentialness of professional roles). One statement concerning duration of service input which failed to reach consensus was not included in the subsequent survey since consensus was reached on its alternative. In Round 3, ten participants were invited with 100% completion. The final survey which was comprised of 12 items which did not gain consensus in the previous Delphi round. In Round 3, eight items gained consensus while four (which pertained to professional roles) did not reach consensus. Service Configuration Consensus on the service configuration statement (Table 2 ) was achieved in Round 3. The Delphi experts were in 100% agreement that an integrated care pathway should be the recommended service model, compared to the alternative option of “a stand-alone” service configuration. Table 2 Service Configuration: Question, Statement and Consensus Outcome When considering the current need in the UK and the development and commissioning of new services, which of the following service models would you recommend? Delphi Statement Percentage of Agreement An integrated specialist care pathway held jointly by community services for Neurodevelopmental and Mental Health conditions (e.g., Paediatrics and CAMHS). 100% Constraints and Obstacles to Service Development and Delivery Experts identified and rated the importance of a series of potential constraints and obstacles to developing and implementing this service model. All items (Table 3 ) in this theme reached consensus in Round 2. Table 3 Constraints and Obstacles to Service Development and Delivery How important are these factors when considering the potential constraints and/or obstacles to developing and delivering this service? Delphi Statement Percentage of Agreement Local clinicians (e.g., GPs, Paediatricians, CAMHS practitioners) should have sufficient training using psychometrics to properly assess and diagnose TS & TDs in C&YP. 80% Paediatrics and Mental Health Service Commissioning teams and funding budgets should be integrated. 80% Professional accrediting organisations (e.g., RcPsych, BPS, HCPC) should include training on assessment and diagnosis of TS and TD in their mandated topics. 100% Clinicians at this service should be provided opportunities to engage in clinical research. 80% National Clinical Guidelines should be developed and implemented. 100% Operational Structure of Proposed Service Model Experts identified and rated their agreement on the importance of various elements concerning the operation of the proposed service model. Age Range Consensus on the age range (Table 4 ) for the proposed service model was achieved in Round 2. This finding was supported by the consensus disagreement on the alternative to the age range experts agreed most with. Table 4 Operational Structure of Proposed Service Model: Age Range How important are these factors when considering the operational elements of this service? Delphi Statement Percentage of Agreement This service should have an age limit of 18 years old with structured support for transition into adult services. 80% This service should have an age limit of 16 years old with structured support for transition into adult services. 70% ( Consensus Disagreement) Duration of Service Input Consensus on the duration of input (Table 5 ) from the proposed service model was achieved in Round 2. Table 5 Operational Structure of Proposed Service Model: Duration of Input How important are these factors when considering the operational elements of this service? Delphi Statement Percentage of Agreement Within CAMHS age range, this service should have no time limit; service input and discharges should be based on clinical need, with provision to re-engage via GP referral. 90% Interventions In regard to statements pertaining to interventions for the proposed service to offer (Table 6 ), all but one statement achieved consensus in Round 2; with the statement relating to TMS reaching consensus in Round 3. Table 6 Operational Structure of Proposed Service Model: Interventions How important are these factors when considering the operational elements of this service? Delphi Statement Percentage of Agreement This service should offer Comprehensive Assessment and diagnosis of all presenting neurodevelopmental conditions. 70% This service should offer Psychoeducation for C&YP, families and schools 90% This service should offer Behavioural Therapies such as Comprehensive Behavioural Intervention for Tics (CBIT), Exposure and Response Prevention (ERP) Habit Reversal 90% This service should offer Psychological Therapies such as Cognitive Behavioural Therapy and third wave interventions. 80% This service should offer Pharmacotherapy 80% This service should offer Specialist training and consultation clinics for community clinicians and schools (e.g., staff and teachers) 90% This service should offer Non-invasive interventions such as Transcranial Magnetic Stimulation (TMS). 70% Professional Staffing A ranking hierarchy (see Fig. 2 ) was created to determine which professional roles experts considered most essential to implementing the proposed model of care. Summary of Service Model: An Integrated Specialist Care Pathway for CYP with TD A visual illustration (Fig. 3 ) was as created to summarise the key elements comprising the proposed service model. All elements included in the visual summary achieved consensus among healthcare experts Discussion This study utilised a classic e-Delphi design aimed at building consensus among healthcare experts to; define and characterise a realistic NHS service model of care with a remit of assessing, diagnosing, and treating TD in CYP, and identify potential barriers and facilitators to establishing and implementing said service model. To our knowledge, this is the first Delphi study to utilise expert consensus with this intention, and it was successful in identifying and gaining expert consensus on elements which are fundamental to the design and implementation of healthcare models ( 27 ). The findings from the present study offers guidance to existing services and clinical pathways, future NHS commissioning teams, policymakers, researchers, and clinicians working with CYP with TD. This study’s findings are in line with existing evidence highlighting the importance of MDTs (evidenced in ranking hierarchy), and the potential benefits of integrated healthcare delivery such as: increased collaboration, pooled expertise which improves managing TD and common comorbidities, shorter wait times, and more efficient referral processes ( 10 ). Furthermore, findings from the present study are consistent with published NHS Long-term plans across England, Wales, and Scotland ( 12 – 14 ) emphasising the importance of integration in service development and delivery. Importantly, experts stressed the need for national guidelines (e.g. NICE guidance). The results from this study represents an intentional step towards addressing the absence of NICE guidance for TD. This study’s findings are informed by experts who not only understand how our healthcare systems operate nationally, but also reflect their in-depth experience and knowledge of working within the current organisational constraints. This is particularly demonstrated by the experts’ consensus on various potential obstacles and relative practical solutions. Strengths and Limitations One particular methodological strength to the present study is demonstrated by the 100% completion of each Delphi Round. Additionally, the sample of experts were representative of the core body of UK specialists within the field ( 10 ), made more robust by the stringent eligibility criteria set by this study. Moreover, by the completion of the third round, expert consensus was reached on all statements pertaining to service configuration, constraints and obstacles to service development and delivery, and the operational structure of the proposed service model (not including professional roles). A potential limitation in this study was its small sample size ( N = 10). There is no consensus in respect to the optimal size for a Delphi expert panel, although 10–15 has been suggested as sufficient if the background of experts in a Delphi panel are homogenous as was the case in the present study( 32 ). However, it is likely that the completion rates would drop with a larger sample. Additionally, having a smaller and more homogenous pool of experts may have potentially influenced the representativeness of group judgements. When considering the variation in percentage of agreement on items across Delphi rounds, however, this influence does not seem likely. Although there are limitations to the sample size, there are particular strengths in regard to the sampling approach employed in the present study. First, the robust eligibility criteria the authors set to define healthcare experts provided an added layer of reliability to this study’s findings. Second, the present study only recruited experts within the UK, which fitted the purpose of the present study. Recruiting experts within the UK meant that these professionals have an intimate understanding and working knowledge of the current constraints, operations, legislature/policies, and culture associated with the NHS. Therefore, the content developed across the Delphi rounds that comprise the proposed model of care inherently reflected this; and the substantial eligibility criteria these experts met provides additional reliability to the findings. The present study had a strong rationale for employing open-ended questions in the first round, and it is worth noting that the qualitative process involved in analysing and generating statements was valuable if labour intensive. Considering this, we acknowledge the utility of other approaches used in Delphi studies such as employing focus groups or similar formats in creating statements for the initial Delphi survey ( 17 ). Another potential limitation in the present study related to the ranking of professional roles, despite not all of them achieving consensus. Expert responses to these items may have been affected by the separate Likert-scale used for professional roles. However, the ranking hierarchy was effectively equivalent in practice. Finally, although the present study was successful in building expert consensus to define and characterise the proposed model of care, the potential size of the service was not addressed and further details regarding staffing is needed. For example, although professional roles were identified and ranked, information on determining the required number and banding of each professional role based on population need would have been useful guidance to include. Clinical Implications and Further Research This study’s findings highlight the importance and effectiveness of working in well-designed integrated healthcare systems. Additionally, the results have implications for accrediting organisations responsible for overseeing the curriculum that is used in various professional training programmes (e.g., BPS, HCPC, RcPsych); suggesting training on the assessment, diagnosis and management of TD be included in their mandatory topics. Further research is needed to evaluate the process of implementing the proposed model of care. Some potential outcomes to consider include: staffing/banding based on population need; patient experience; throughflow; level of MDT-working; and effectiveness of protocols and/or treatment approaches. Although the authors consider the employed sampling approach to be a strength and best fit for the purpose of the present study, it is important to acknowledge the utility of alternative sampling approaches. For example, future research would benefit from the inclusion of international experts. Although there are no existing UK clinical guidelines for TD, there are useful and in-depth clinical guidelines developed internationally ( 33 – 34 ). The present study aimed to define and characterise the content and structure of the proposed model of care. Consensus was gained on what the service should assess, and which interventions should be offered, but does not account for the clinical procedures and protocols involved in such processes. Thus, including international experts in future research would be beneficial for the alignment of the proposed service model with the current evidence-base. Conclusion The present study successfully built consensus among healthcare experts to; define and characterise a specialised integrated NHS service model with a remit of assessing, diagnosing, and treating TD in CYP, and identify potential obstacles and facilitators to establishing and implementing the service model. Importantly, all components related to the proposed service model’s configuration, barriers and facilitators to implementation, and operation (i.e., age range, duration of input and interventions offered) achieved expert consensus. The findings from the present study provide an important first step toward addressing the absence of NICE guidelines and the significantly limited access to specialised services for CYP presenting with TD in the UK. Furthermore, the service model characterised in the present study highlights the importance of integrated working, which aligns with NHS Long-term Plans across the UK. Future research should consider evaluating the implementation process of the proposed model of care. Abbreviations CBIT Comprehensive Behavioural Intervention for Tics CBT Cognitive Behavioural Therapy CYP Children and Young People ERP Exposure and Response Prevention MDT Multi-Disciplinary Team NHS National Health Service NICE National Institute of Clinical Excellence NIHR National Institute for Health Research QOL Quality of Life TD Tic Disorders TMS Transcranial Magnetic Stimulation TS Tourette Syndrome UK United Kingdom Declarations • Ethics approval and consent to participate: The present study gained ethical approval from the School of Human and Behavioural Sciences Research Ethics Committee at Bangor University in the UK. All participants provided informed consent prior to any data collection. Research Proposal number: 2022-17246 • Consent for publication: Consent obtained prior to participation • Availability of data and materials: All data generated or analysed during this study are included in this published article [and its supplementary information files]. • Competing interests: The authors declare that they have no competing interests • Funding: All funding was sourced internally through North Wales Clinical Psychology Programme, Bangor University • Authors' contributions (will need your help for this bit): JK was the primary researcher responsible for conception, recruitment, design, analysis, report creation and write up. MJ provided doctoral supervision, aided in research, design and analysis processes. KM was responsible for preparation and draft of manuscript and substantive revision for publishing. • Acknowledgements Dr Chris Saville, Dr Maddie Groom and Dr Sophie Hall References American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition: DSM-5. 5th edition. 2013. 991. Evans J, Seri S, Cavanna AE. The effects of Gilles de la Tourette syndrome and other chronic tic disorders on quality of life across the lifespan: a systematic review. Eur Child Adolesc Psychiatry. 2016;25(9):939–48. Cavanna AE, Ganos C, Hartmann A, Martino D, Pringsheim T, Seri S. The cognitive neuropsychiatry of Tourette syndrome. Cognit Neuropsychiatry. 2020;25(4):254–68. Cox JH, Nahar A, Termine C, Agosti M, Balottin U, Seri S et al. Social stigma and self-perception in adolescents with tourette syndrome. Adolesc Health Med Ther. 2019;75–82. Malli MA, Forrester-Jones R. Stigma and Adults with Tourette’s Syndrome: Never Laugh at Other People’s Disabilities, Unless they have Tourette’s—Because How Can You Not? J Dev Phys Disabil. 2022;34(5):871–97. Eapen V, Cavanna AE, Robertson MM. Comorbidities, social impact, and quality of life in Tourette syndrome. Front Psychiatry. 2016;7:97. Yadegar M, Guo S, Ricketts EJ, Zinner SH. Assessment and management of tic disorders in pediatric primary care settings. Curr Dev Disord Rep. 2019;6(3):159–72. Smith H, Fox JR, Trayner P. The lived experiences of individuals with Tourette syndrome or tic disorders: A meta-synthesis of qualitative studies. Br J Psychol. 2015;106(4):609–34. Hollis C, Hall CL, Jones R, Marston L, Le Novere M, Hunter RM et al. Therapist-Supported Online Remote Behavioural Intervention for Tics (ORBIT) in Children and Adolescents: A Single-Blind Randomised Controlled Trial. 2021;8(10):871–82. Bhikram T, Elmaghraby R, Abi-Jaoude E, Sandor P. An International Survey of Health Care Services Available to Patients With Tourette Syndrome. Front Psychiatry. 2021;12:621874. Welsh Government. Written Statement: Improvements in Neurodevelopmental Conditions Services. GOV.WALES. 2022: https://gov.wales/written-statement-improvements-neurodevelopmental-conditions-services . Accessed 19 Aug 2022. NHS. NHS Long Term Plan: Priorities and Operational Planning Guidance 2023/24. 2023. https://www.england.nhs.uk/wp-content/uploads/2022/12/PRN00021-23-24-priorities-and-operational-planning-guidance-v1.1.pdf . Accessed 19 Aug 2022. Scottish Gov, Recovery Plan NHS. 2021–2026. 2021. NHS Recovery Plan 2021–2026 The Scottish Government. https://www.gov.scot/binaries/content/documents/govscot/publications/strategy-plan/2021/08/nhs-recovery-plan/documents/nhs-recovery-plan-2021-2026/nhs-recovery-plan-2021-2026/govscot%3Adocument/nhs-recovery-plan-2021-2026.pdf . Accessed 19 Aug 2022. Welsh Gov. NHS Wales Planning Framework 2022–2025. 2022. https://www.gov.wales/sites/default/files/publications/2021-11/nhs-wales-planning-framework-2022-2025_0.pdf . Accessed 20 Aug 2022. Keeney S. The Delphi Technique in Nursing and Health Research. Wiley-Blackwell; 2011. Dalkey N, Helmer O. An Experimental Application of the DELPHI Method to the Use of Experts. Manag Sci. 1963;9(3):458–67. Spranger J, Homberg A, Sonnberger M, Niederberger M. Reporting guidelines for Delphi techniques in health sciences: A methodological review. Z Für Evidenz Fortbild Qual Im Gesundheitswesen. 2022. 10.1016/j.zefq.2022.04.025 . Niederberger M, Spranger J. Delphi technique in health sciences: a map. Front Public Health. 2020;8:457. Howarth E, Vainre M, Humphrey A, Lombardo C, Hanafiah AN, Anderson JK, et al. Delphi study to identify key features of community-based child and adolescent mental health services in the East of England. BMJ Open. 2019;9(6):e022936. Sezgin D, O’Caoimh R, O’Donovan MR, Salem MA, Kennelly S, Samaniego LL, et al. Defining the characteristics of intermediate care models including transitional care: an international Delphi study. Aging Clin Exp Res. 2020;32(11):2399–410. Henderson EJ, Rubin GP. Development of a community-based model for respiratory care services. BMC Health Serv Res. 2012;12(1):1–10. Jünger S, Payne SA, Brine J, Radbruch L, Brearley SG. Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliat Med. 2017;31(8):684–706. Rand SL. A common procedure for using the Kinetic Family Drawing (KFD) in educational psychology practice: an exploratory study using the Delphi method]. University of Essex & Tavistock and Portman NHS Foundation Trust; 2020. https://repository.essex.ac.uk/28531/1/Sarah%20Rand%20-%20Thesis%20V1%20July%202020.pdf Accessed 25 Aug 2022. Fink-Hafner D, Dagen T, Doušak M, Novak M, Hafner-Fink M. Delphi method: strengths and weaknesses. Adv Methodol Stat. 2019;16(2):1–19. Sinha IP, Smyth RL, Williamson PR. Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies. PLoS Med. 2011;8(1):e1000393. Taylor E. We agree, don’t we? The Delphi method for health environments research. HERD Health Environ Res Des J. 2020;13(1):11–23. NIHR. New Models of Care - What’s the Evidence? [Internet]. 2019. https://www.strategyunitwm.nhs.uk/sites/default/files/2019-03/New%20Models%20of%20Care%20-%20What%27s%20the%20evidence%20FINAL.pdf Davis SF, Hinde S, Ariss S. Complex programme evaluation of a ‘new care model’vanguard: a shared commitment to quality improvement in an integrated health and care context. BMJ Open. 2020;10(3):e029174. Belton I, MacDonald A, Wright G, Hamlin I. Improving the practical application of the Delphi method in group-based judgment: A six-step prescription for a well-founded and defensible process. Technol Forecast Soc Change. 2019;147:72–82. Meijering JV, Tobi H. The effect of controlled opinion feedback on Delphi features: Mixed messages from a real-world Delphi experiment. Technol Forecast Soc Change. 2016;103:166–73. Barrios M, Guilera G, Nuño L, Gómez-Benito J. Consensus in the delphi method: What makes a decision change? Technol Forecast Soc Change. 2021;163:120484. Taylor E. We agree, don’t we? The Delphi method for health environments research. HERD Health Environ Res Des J. 2020;13(1):11–23. Pringsheim T, Okun MS, Müller-Vahl K, Martino D, Jankovic J, Cavanna AE, et al. Practice guideline recommendations summary: treatment of tics in people with Tourette syndrome and chronic tic disorders. Neurology. 2019;92(19):896–906. Mathews CA. Treating Tourette syndrome and other chronic tic disorders: updated guidelines by the European society for the study of Tourette syndrome (ESSTS). Eur Child Adolesc Psychiatry. 2022;1–2. Additional Declarations The authors declare no competing interests. Supplementary Files AppendixC.png AppendixC.1.png AppendixC.2.png Cite Share Download PDF Status: Posted Version 2 posted You are reading this latest preprint version Show more versions Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. Our growing team is made up of researchers and industry professionals working together to solve the most critical problems facing scientific publishing. Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4835394","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":346910358,"identity":"411881a9-17f8-4b1e-9879-e1eb594a39dd","order_by":0,"name":"Jaxon Kramer","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA9klEQVRIiWNgGAWjYBAC9gYewweJbQkM/BJIoowNeLQwNvAkG3wEapGcQYKWY5IzgVoMbhCtZUZugzRvW5q88e3mZw+/VNxj4G8/wIZiJYaWnvMMxrz/cgy33TlmbixzpphB4kwCm+QGfFra+xmSedsqEsxuJJhJSwJdyHCDgU3yAT4tzbwNh0FajGekfwNrkSekRbC952DjzLacBAOJHDPJj5BwwO8waZ4zyQwf29IMZ9w5UybNcCaBx/BMYrMlPu/zSeSY/0hsS5bnn92+TfJHRYKc3PHDB2/24NGCAph5GBh4CMQKGmD8QbzaUTAKRsEoGEEAAPXiT42LAb/3AAAAAElFTkSuQmCC","orcid":"https://orcid.org/0000-0003-4607-7946","institution":"North Wales Clinical Psychology Programme, School of Psychology, Bangor University, Bangor, UK \u0026 Wandsworth Child \u0026 Adolescent Mental Health Service (Tier 3), South West London \u0026 St George’s NHS Trust, London, UK","correspondingAuthor":true,"prefix":"","firstName":"Jaxon","middleName":"","lastName":"Kramer","suffix":""},{"id":346910359,"identity":"dc916916-0207-4b55-a400-6286a870cb07","order_by":1,"name":"Leanne Makarem","email":"","orcid":"https://orcid.org/0009-0004-0667-0061","institution":"St George’s University Hospitals NHS Foundation Trust, London, UK","correspondingAuthor":false,"prefix":"","firstName":"Leanne","middleName":"","lastName":"Makarem","suffix":""},{"id":346910360,"identity":"acb008a9-db32-499c-a9f5-ed784ae9164a","order_by":2,"name":"Mike Jackson","email":"","orcid":"https://orcid.org/0000-0001-6733-9058","institution":"Bangor University","correspondingAuthor":false,"prefix":"","firstName":"Mike","middleName":"","lastName":"Jackson","suffix":""}],"badges":[],"createdAt":"2024-07-31 12:14:15","currentVersionCode":2,"declarations":{"humanSubjects":false,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":false,"humanSubjectConsent":false,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-4835394/v2","doiUrl":"https://doi.org/10.21203/rs.3.rs-4835394/v2","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":98537906,"identity":"ba5e88ce-cd98-445d-8219-820a9543ed53","added_by":"auto","created_at":"2025-12-18 16:59:30","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":155282,"visible":true,"origin":"","legend":"\u003cp\u003eGraphical Flowchart of the Delphi Process\u003c/p\u003e","description":"","filename":"image1.png","url":"https://assets-eu.researchsquare.com/files/rs-4835394/v2/afdf9b97cdd49a07876dd5bf.png"},{"id":98625412,"identity":"36d14f5a-4ef7-4a44-850a-5321704a0c59","added_by":"auto","created_at":"2025-12-19 17:09:06","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":27339,"visible":true,"origin":"","legend":"\u003cp\u003eRanking Hierarchy of Professional Roles.\u003c/p\u003e","description":"","filename":"image2.png","url":"https://assets-eu.researchsquare.com/files/rs-4835394/v2/de26ab04f6eaf6c47f3029d7.png"},{"id":98537908,"identity":"b323bd57-b759-47b9-9864-4e90b83889b9","added_by":"auto","created_at":"2025-12-18 16:59:30","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":76437,"visible":true,"origin":"","legend":"\u003cp\u003eIllustration summarising the key elements comprising the proposed service model.\u003c/p\u003e","description":"","filename":"image3.png","url":"https://assets-eu.researchsquare.com/files/rs-4835394/v2/fa711306e89c469123c8b68a.png"},{"id":98631976,"identity":"fc800924-5a16-49ce-915d-d9628c64b40c","added_by":"auto","created_at":"2025-12-19 17:20:47","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1426484,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4835394/v2/35bfec8a-9100-48bb-9369-43e0a470f75d.pdf"},{"id":98626484,"identity":"1f571a80-cd98-469e-92b4-f2d9cbd5eadf","added_by":"auto","created_at":"2025-12-19 17:09:47","extension":"png","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":231538,"visible":true,"origin":"","legend":"","description":"","filename":"AppendixC.png","url":"https://assets-eu.researchsquare.com/files/rs-4835394/v2/bf7fc799241e0dc119203fb1.png"},{"id":98537910,"identity":"8ab94f9f-5bc6-4efc-93de-7819bca8a223","added_by":"auto","created_at":"2025-12-18 16:59:30","extension":"png","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":258505,"visible":true,"origin":"","legend":"","description":"","filename":"AppendixC.1.png","url":"https://assets-eu.researchsquare.com/files/rs-4835394/v2/6a39b05ad7e09a3e99f9feb6.png"},{"id":98537909,"identity":"e755b33f-8eb5-4090-ac08-8ed15f10a35a","added_by":"auto","created_at":"2025-12-18 16:59:30","extension":"png","order_by":3,"title":"","display":"","copyAsset":false,"role":"supplement","size":224860,"visible":true,"origin":"","legend":"","description":"","filename":"AppendixC.2.png","url":"https://assets-eu.researchsquare.com/files/rs-4835394/v2/af8f5bbdbb8e410bc714f8d4.png"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"Defining and Characterising a Model of Care for the Assessment, Diagnosis and Management of Tic Disorders in Children and Young People: A Delphi Study","fulltext":[{"header":"Background","content":"\u003cp\u003eChronic Tic Disorders (TD), such as Tourette syndrome (TS), are non-curable neurodevelopmental conditions characterized by sudden, persistent, purposeless motor movements, or vocalizations known as tics (\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e). TD typically have an early onset in childhood, peak during early adolescence and fluctuate in both frequency and severity over time. (\u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) The prevalence of TD in Children and Young People (CYP) under the age of 18 approaches 3% globally, indicating TD to be more common than previously believed; with prevalence rates in the United Kingdom (UK) that come close to matching those of Autism Spectrum Condition in school-aged children (\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e). However, NHS services with a remit for the assessment, diagnosis and management of TS and TD in CYP remain severely limited.\u003c/p\u003e \u003cp\u003eEmpirical evidence has consistently shown that physical and behavioural symptoms of TD in CYP contribute to stigma and social discrimination, poor health outcomes, overall reduction in quality of life (QoL), poor self-esteem and decreased motivation to seek help (\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e). Adverse outcomes have also been shown to continue into adulthood, with individuals enduring significant rates of exclusion, not just interpersonally but on a more global level, including life domains such as employment, education and healthcare (\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e). Early diagnosis and basic intervention such as psycho-education have been shown to have a significant, positive and protective influence on self-perception and QoL in CYP that extends into adulthood (\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e). However, these benefits cannot be gained without access to informed and reliable specialist healthcare services and professionals.\u003c/p\u003e \u003cp\u003eThe processes involved in the assessment, diagnosis and management of TD are known to be complex and difficult to navigate in the UK and within the NHS (\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e). Patients and parents of CYP with TD describe many primary care health professionals being unfamiliar and/or uninformed about tics, leading to delays in obtaining an assessment and reliable diagnosis (\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e). Individuals in the UK face significant geographical and systemic barriers to accessing care, with only a handful of specialist services in England, and no specialist services or care pathways in Wales and Scotland. Moreover, there is significant variation in how care is being delivered to CYP with TD across the UK; particularly in the structure of service delivery models (i.e., standalone services vs integrated care pathways) and types of support they provide service-users (\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eData from a recent international survey of health care services available to patients with TD provided evidence that highlights the concerning state of service provision for this population within the UK (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Out of all the surveyed countries, the UK revealed the longest wait times at 3\u0026ndash;6 months only after a referral to a specialist service had been made. Only eight specialists, (described as clinicians whose practice included more than 60% of patients with tics) were identified in the UK; and patient respondents in the study reported enduring a long and arduous process before receiving a diagnosis. These results highlight the need for substantial service developments; but there is a lack of clarity over what form and structure this should take (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e).\u003c/p\u003e \u003cp\u003eDebates have been held in both the UK Parliament and Welsh Senedd during 2022, highlighting the urgent need for specialist services aimed at providing assessment, diagnosis, and care for CYP with TD. The Welsh Government (2022) published a written statement announcing their decision to make an additional \u0026pound;12\u0026nbsp;million available to support a new national improvement programme for neurodevelopmental conditions (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e). They specifically stated that their \u0026ldquo;aim is to build on these foundations to ensure equity of services and support for people with other neurodevelopmental conditions, such ADHD and Tourette\u0026rsquo;s Syndrome\u0026rdquo; (\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) These recent decisions along with the NHS Long-term Plans for England (\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e), Scotland (\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e), and Wales (\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) highlight the present time as a critical juncture in which collaboration and integration are prioritised in respect to healthcare service development and delivery.\u003c/p\u003e \u003cp\u003e Despite repeated requests and significant efforts made by Tourettes Action UK, healthcare professionals and the general-public, there remains an absence of national clinical guidelines; with the National Institute for Clinical Excellence (NICE) denying the latest request for their development this year. When considering the current need for specialist services for CYP with TD in the UK, the lack of national clinical guidelines means there are substantial uncertainties over service configuration, funding arrangements, operational structure, interventions and barriers and facilitators to service implementation.\u003c/p\u003e \u003cp\u003eThrough expert consensus, the present study aimed to: (a) identify elements which define and characterise a realistic NHS service model with a remit of assessing, diagnosing, and treating TD in CYP, and (b) identify the potential barriers and facilitators to establishing and implementing a service model.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eDelphi Method\u003c/h2\u003e \u003cp\u003eThe Delphi method is a systematic process of gaining consensus from a panel of experts in a particular field who anonymously participate in a series of iterative rounds of survey data collection and controlled feedback (\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e). The Delphi method was originally developed by the RAND Corporation during the Cold War (\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) and has since been established as a reliable research method in gaining expert consensus to answer complex questions (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). The Delphi method has been applied in many domains of healthcare research, such as: healthcare-related interventions, the formation of clinical and best practice guidelines (\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e), and development and improvement of healthcare services and models of care (\u003cspan additionalcitationids=\"CR20\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eStudy Design\u003c/h2\u003e \u003cp\u003eThe present Delphi study consisted of three survey rounds. In line with current best practice guidelines for conducting and reporting Delphi studies (\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e), specific decision criteria were defined \u003cem\u003ea priori\u003c/em\u003e. Consensus was defined as being gained when the percentage of agreement among experts reached 70%, which generally exceeds thresholds from other studies employing similar sample sizes and scales (\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e). Non-consensus was defined as failure to reach consensus after each round. The stopping criteria was operationalised as the completion of three rounds or if all items met consensus. Criteria for dropping items from survey rounds was defined as being satisfied only if consensus on an item was reached, or if there was more than one item addressing the same statement (e.g. two different statements on what the service age limit should be) and one reached consensus; that item and its alternatives would then be dropped. Surveys allowed participants to recommend the inclusion and/or adjustment to the wording of statements. A criterion for this was also defined a priori, requiring at least two similar suggestions for the adjustment or adding of items into a subsequent round.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eExpert Panel\u003c/h2\u003e \u003cp\u003eExperts (\u003cem\u003eN\u003c/em\u003e\u0026thinsp;=\u0026thinsp;10) were defined as eligible if they met either of the following criteria:\u003c/p\u003e \u003cp\u003e\u003col\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eProfessionals who practice in the UK and have been working clinically (with dedicated/protected clinical time allotted to work involving TS/TD populations) for more than five years.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003cspan\u003e\u003cli\u003e\u003cp\u003eProfessionals who have been listed as an author in at least 5 peer-reviewed publications in the field of TS or TD.\u003c/p\u003e\u003c/li\u003e\u003c/span\u003e\u003c/ol\u003e\u003c/p\u003e \u003cp\u003e Experts were recruited through the following sources: Tourettes Action (leading UK charity), TS clinical guidelines, service and policy steering groups organised by the Centre for ADHD and Neurodevelopmental Disorders at University of Nottingham, an advert posted to and shared on Twitter and LinkedIn, as well as snowball sampling (experts identified by other participants). Once potential participants emailed the researcher, they would be provided with a participant information sheet and informed consent document; which they signed and returned electronically. The 10 experts recruited in the present study were primarily clinical; with 9 meeting inclusion criteria in group a, and one meeting the criteria in group b. Everyone who was identified as meeting the eligibility criteria accepted the invitation to participate.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData Collection\u003c/h2\u003e \u003cp\u003eData was collected from three Delphi survey rounds over a nine-week period between February 2023 and April 2023. The duration for each round was three weeks in total, with the first two weeks allocated to participants and the final week to researchers for analysis and aggregation of responses used in the development of surveys for subsequent round. Surveys were developed and tested by researchers prior to administration, as well as disseminated and completed by participants online using JISC Online Surveys platform (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e\u003ca href=\"http://www.Jisc.ac.uk\" target=\"_blank\"\u003ewww.Jisc.ac.uk\u003c/a\u003e\u003c/span\u003e\u003cspan address=\"http://www.Jisc.ac.uk\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e). Anonymity of participants and their responses were protected through allocating participant numbers, and custom links for each survey round were emailed to each expert through Jisc. To minimise attrition, the landing page for each round displayed the closing date (i.e. deadline) in large, bold, red font. Personalised reminders for completion were also sent through JISC at two time-points (seven and three days from closing date).\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eRound 1 Survey\u003c/h2\u003e \u003cp\u003eThe first survey opened with a participation information page outlining in detail what each Delphi round would entail, as well as the content from the participant information sheet. Delphi methodology used in healthcare research varies, some researchers endorse conducting literature reviews and constructing surveys for the first round accordingly (\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e). However, others suggest that using open-ended questions in first round Delphi surveys allow participants to express their own views on an issue, facilitating information gathering which extends beyond what is available in the literature (\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e). Additionally, this approach simultaneously prevents bias from being introduced to the study by researchers imposing their own views on participants (\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e). Whilst both are widely recognised as acceptable approaches, the present study\u0026rsquo;s first round survey was comprised of seven open-ended, free-text response questions (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). The rationale for utilising open-ended questions in the first round is consistent with the present study\u0026rsquo;s background and aims; as well as being influenced in part by the paucity of existing empirical evidence, which would be needed for data in order to reliably develop a structured questionnaire. Using experts' practical experience to design subsequent surveys through open-ended responses enriched the current study's findings; in that they reflect the current state of affairs (i.e. NHS constraints, policies, etc.) and relevant clinical implications.\u003c/p\u003e \u003cp\u003eThe Round 1 survey questions (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e) were informed by the principles developed by the National Institute for Health Research (NIHR); which is widely used in the process of designing, implementing and evaluating new NHS models of care (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e). Participants were instructed to answer each question as fully as possible with explanatory detail; whilst also clarifying that they were not expected to \u0026ldquo;write an exhaustive report.\u0026rdquo;\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eOpen-ended Questions Presented in Round 1 Delphi Survey\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1. What kind of service structure (e.g., stand-alone, specialised care-pathway) would you recommend as being best-practice for this population? What would be the main arguments to support this recommendation?\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e2. What are the potential constraints/obstacles for implementing this service structure?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e3. What should be the age constraints for this service?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e4. What occupations/Roles should be involved in delivering services?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e5. What types of interventions should this service offer?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e6. What are your views on the duration this service should provide input for?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e7. Are there other questions/issues/areas that you feel should be addressed which aren\u0026rsquo;t covered in the items above?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eRound 2 Survey\u003c/h2\u003e \u003cp\u003eThe Round 2 survey contained a total of 28 statements generated following qualitative processing (see Data Analysis for further detail) of the collective responses from experts in Round 1. Themes that arose for these statements were in line with the principles found in the NIHR (2019) framework, such as: Service Configuration, Constraints and Obstacles to Service Development and Delivery, and Operational Structure of Service Model. For items 1\u0026ndash;18, participants were asked to rate their level of agreement with a statement using a 5-point Likert scale (1\u0026thinsp;=\u0026thinsp;Strongly Disagree, 2\u0026thinsp;=\u0026thinsp;Disagree, 3\u0026thinsp;=\u0026thinsp;Neither Agree nor Disagree, 4\u0026thinsp;=\u0026thinsp;Agree, 5\u0026thinsp;=\u0026thinsp;Strongly Agree). Participants were also provided with an \u0026ldquo;Other\u0026rdquo; option, enabling them to respond with a free-text answer if they felt a statement needed adjustment or further clarification. Allowing the option for free-text response has been shown to significantly enhance the quality and relevance of survey content in Delphi studies (\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e). For items 19\u0026ndash;28, participants were presented with a list of professional roles identified in Round 1 responses and asked to rate their essentialness to delivering the respective service using a 3-point Likert scale (1\u0026thinsp;=\u0026thinsp;Not Required, 2\u0026thinsp;=\u0026thinsp;Desirable, 3\u0026thinsp;=\u0026thinsp;Essential).\u003c/p\u003e \u003c/div\u003e\n\u003ch3\u003eRound 3 Survey\u003c/h3\u003e\n\u003cp\u003eThe Round 3 survey was comprised of 12 items which did not gain consensus in the previous Round. Based on expert feedback from the previous round, the first statement regarding service configuration was adjusted, and experts were asked to choose the structure they would recommend. Round 3 surveys were individually personalised for each participant in order to facilitate controlled feedback, which is considered an essential component in Delphi research methodology (\u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e). For each statement, participants were presented with an image displaying their previous response (e.g. in Round 2), alongside the average percentage of responses from the group shown in parentheses. This provided experts with the opportunity to compare, consider, and adjust their response if desired; often bolstering the consensus finding process through the convergence of opinions (\u003cspan citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e).\u003c/p\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eData Analysis\u003c/h2\u003e \u003cdiv id=\"Sec11\" class=\"Section3\"\u003e \u003ch2\u003eQualitative\u003c/h2\u003e \u003cp\u003eContent from the free-text responses in the Round 1 survey were independently read and analysed by the first and second authors separately. For each question, researchers read through each participant\u0026rsquo;s response, highlighted the frequency, order or intensity of occurrence of words, phrases or sentences, and assigned them to emerging categories. Categories which were similar in meaning were combined into a single statement. Categories and subsequent statements were validated through the following process: both researchers discussed their findings i.e., the characteristics and overall meaning of each category, establishing agreement that categories accurately reflected participants\u0026rsquo; responses and that each statement accurately reflected the categories they subsumed. All statements generated from this process and included in the Round 2 survey required full agreement between researchers.\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eQuantitative\u003c/h2\u003e \u003cp\u003ePercentage of agreement on Likert-scale rated items in Round 2 and Round 3 was calculated through Jisc Survey Software. The 5-point Likert scale data was trichotomised into 3-points; with disagree representing \u0026ldquo;1\u0026ndash;2,\u0026rdquo; neither agree nor disagree remaining, and agree representing \u0026ldquo;4\u0026ndash;5.\u0026rdquo; Numerical values were given to responses (1\u0026thinsp;=\u0026thinsp;Not important, 2\u0026thinsp;=\u0026thinsp;Desirable, 3\u0026thinsp;=\u0026thinsp;Essential) and summed in order to create a ranking hierarchy identifying prioritised professional roles for newly commissioned services.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eA flowchart (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e) was created to illustrate each stage and their respective outcomes of the present study\u0026rsquo;s Delphi process. Delphi statements and their consensus outcomes were organised based on their respective themes and reported in the results (see Tables\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e\u0026ndash;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e) In Round one, ten participants were invited with 100% completing the survey comprised of 7 open-ended questions. In Round 2, ten participants were invited and 100% completed the survey comprised of 28 statements generated from Round 1 free-text responses. In Round 2, consensus was gained on 15 out of the 28 statements (53.57%) while 13 items failed to gain consensus (10 of which related to essentialness of professional roles). One statement concerning duration of service input which failed to reach consensus was not included in the subsequent survey since consensus was reached on its alternative. In Round 3, ten participants were invited with 100% completion. The final survey which was comprised of 12 items which did not gain consensus in the previous Delphi round. In Round 3, eight items gained consensus while four (which pertained to professional roles) did not reach consensus.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cdiv id=\"Sec14\" class=\"Section2\"\u003e \u003ch2\u003eService Configuration\u003c/h2\u003e \u003cp\u003eConsensus on the service configuration statement (Table\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e) was achieved in Round 3. The Delphi experts were in 100% agreement that an integrated care pathway should be the recommended service model, compared to the alternative option of \u0026ldquo;a stand-alone\u0026rdquo; service configuration.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003e Service Configuration: Question, Statement and Consensus Outcome\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cem\u003eWhen considering the current need in the UK and the development and commissioning of new services, which of the following service models would you recommend?\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDelphi Statement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003ePercentage of Agreement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eAn integrated specialist care pathway held jointly by community services for Neurodevelopmental and Mental Health conditions (e.g., Paediatrics and CAMHS).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e100%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec15\" class=\"Section2\"\u003e \u003ch2\u003eConstraints and Obstacles to Service Development and Delivery\u003c/h2\u003e \u003cp\u003eExperts identified and rated the importance of a series of potential constraints and obstacles to developing and implementing this service model. All items (Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e) in this theme reached consensus in Round 2.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eConstraints and Obstacles to Service Development and Delivery\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cem\u003eHow important are these factors when considering the potential constraints and/or obstacles to developing and delivering this service?\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDelphi Statement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003ePercentage of Agreement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eLocal clinicians (e.g., GPs, Paediatricians, CAMHS practitioners) should have sufficient training using psychometrics to properly assess and diagnose TS \u0026amp; TDs in C\u0026amp;YP.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e80%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003ePaediatrics and Mental Health Service Commissioning teams and funding budgets should be integrated.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e80%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eProfessional accrediting organisations (e.g., RcPsych, BPS, HCPC) should include training on assessment and diagnosis of TS and TD in their mandated topics.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e100%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eClinicians at this service should be provided opportunities to engage in clinical research.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e80%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eNational Clinical Guidelines should be developed and implemented.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e100%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec16\" class=\"Section2\"\u003e \u003ch2\u003eOperational Structure of Proposed Service Model\u003c/h2\u003e \u003cp\u003eExperts identified and rated their agreement on the importance of various elements concerning the operation of the proposed service model.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec17\" class=\"Section2\"\u003e \u003ch2\u003eAge Range\u003c/h2\u003e \u003cp\u003eConsensus on the age range (Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e) for the proposed service model was achieved in Round 2. This finding was supported by the consensus disagreement on the alternative to the age range experts agreed most with.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eOperational Structure of Proposed Service Model: Age Range\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cem\u003eHow important are these factors when considering the operational elements of this service?\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDelphi Statement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003ePercentage of Agreement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should have an age limit of 18 years old with structured support for transition into adult services.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e80%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should have an age limit of 16 years old with structured support for transition into adult services.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e70%\u003c/b\u003e\u003c/p\u003e \u003cp\u003e(\u003cem\u003eConsensus Disagreement)\u003c/em\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec18\" class=\"Section2\"\u003e \u003ch2\u003eDuration of Service Input\u003c/h2\u003e \u003cp\u003eConsensus on the duration of input (Table\u0026nbsp;\u003cspan refid=\"Tab5\" class=\"InternalRef\"\u003e5\u003c/span\u003e) from the proposed service model was achieved in Round 2.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab5\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 5\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eOperational Structure of Proposed Service Model: Duration of Input\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cem\u003eHow important are these factors when considering the operational elements of this service?\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDelphi Statement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003ePercentage of Agreement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eWithin CAMHS age range, this service should have no time limit; service input and discharges should be based on clinical need, with provision to re-engage via GP referral.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e90%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec19\" class=\"Section2\"\u003e \u003ch2\u003eInterventions\u003c/h2\u003e \u003cp\u003eIn regard to statements pertaining to interventions for the proposed service to offer (Table\u0026nbsp;\u003cspan refid=\"Tab6\" class=\"InternalRef\"\u003e6\u003c/span\u003e), all but one statement achieved consensus in Round 2; with the statement relating to TMS reaching consensus in Round 3.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab6\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 6\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eOperational Structure of Proposed Service Model: Interventions\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colspan=\"2\" nameend=\"c2\" namest=\"c1\"\u003e \u003cp\u003e\u003cem\u003eHow important are these factors when considering the operational elements of this service?\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eDelphi Statement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003ePercentage of Agreement\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should offer Comprehensive Assessment and diagnosis of all presenting neurodevelopmental conditions.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e70%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should offer Psychoeducation for C\u0026amp;YP, families and schools\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e90%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should offer Behavioural Therapies such as Comprehensive Behavioural Intervention for Tics (CBIT), Exposure and Response Prevention (ERP) Habit Reversal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e90%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should offer Psychological Therapies such as Cognitive Behavioural Therapy and third wave interventions.\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e80%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should offer Pharmacotherapy\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e80%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should offer Specialist training and consultation clinics for community clinicians and schools (e.g., staff and teachers)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e90%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eThis service should offer Non-invasive interventions such as Transcranial Magnetic Stimulation (TMS).\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003e70%\u003c/b\u003e\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec20\" class=\"Section2\"\u003e \u003ch2\u003eProfessional Staffing\u003c/h2\u003e \u003cp\u003eA ranking hierarchy (see Fig.\u0026nbsp;\u003cspan refid=\"Fig2\" class=\"InternalRef\"\u003e2\u003c/span\u003e) was created to determine which professional roles experts considered most essential to implementing the proposed model of care.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec21\" class=\"Section2\"\u003e \u003ch2\u003eSummary of Service Model: An Integrated Specialist Care Pathway for CYP with TD\u003c/h2\u003e \u003cp\u003eA visual illustration (Fig.\u0026nbsp;\u003cspan refid=\"Fig3\" class=\"InternalRef\"\u003e3\u003c/span\u003e) was as created to summarise the key elements comprising the proposed service model. All elements included in the visual summary achieved consensus among healthcare experts\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study utilised a classic e-Delphi design aimed at building consensus among healthcare experts to; define and characterise a realistic NHS service model of care with a remit of assessing, diagnosing, and treating TD in CYP, and identify potential barriers and facilitators to establishing and implementing said service model. To our knowledge, this is the first Delphi study to utilise expert consensus with this intention, and it was successful in identifying and gaining expert consensus on elements which are fundamental to the design and implementation of healthcare models (\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e). The findings from the present study offers guidance to existing services and clinical pathways, future NHS commissioning teams, policymakers, researchers, and clinicians working with CYP with TD.\u003c/p\u003e \u003cp\u003eThis study\u0026rsquo;s findings are in line with existing evidence highlighting the importance of MDTs (evidenced in ranking hierarchy), and the potential benefits of integrated healthcare delivery such as: increased collaboration, pooled expertise which improves managing TD and common comorbidities, shorter wait times, and more efficient referral processes (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e). Furthermore, findings from the present study are consistent with published NHS Long-term plans across England, Wales, and Scotland (\u003cspan additionalcitationids=\"CR13\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) emphasising the importance of integration in service development and delivery. Importantly, experts stressed the need for national guidelines (e.g. NICE guidance). The results from this study represents an intentional step towards addressing the absence of NICE guidance for TD. This study\u0026rsquo;s findings are informed by experts who not only understand how our healthcare systems operate nationally, but also reflect their in-depth experience and knowledge of working within the current organisational constraints. This is particularly demonstrated by the experts\u0026rsquo; consensus on various potential obstacles and relative practical solutions.\u003c/p\u003e \u003cdiv id=\"Sec23\" class=\"Section2\"\u003e \u003ch2\u003eStrengths and Limitations\u003c/h2\u003e \u003cp\u003eOne particular methodological strength to the present study is demonstrated by the 100% completion of each Delphi Round. Additionally, the sample of experts were representative of the core body of UK specialists within the field (\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e), made more robust by the stringent eligibility criteria set by this study. Moreover, by the completion of the third round, expert consensus was reached on all statements pertaining to service configuration, constraints and obstacles to service development and delivery, and the operational structure of the proposed service model (not including professional roles). A potential limitation in this study was its small sample size (\u003cem\u003eN\u003c/em\u003e\u0026thinsp;=\u0026thinsp;10). There is no consensus in respect to the optimal size for a Delphi expert panel, although 10\u0026ndash;15 has been suggested as sufficient if the background of experts in a Delphi panel are homogenous as was the case in the present study(\u003cspan citationid=\"CR32\" class=\"CitationRef\"\u003e32\u003c/span\u003e). However, it is likely that the completion rates would drop with a larger sample. Additionally, having a smaller and more homogenous pool of experts may have potentially influenced the representativeness of group judgements. When considering the variation in percentage of agreement on items across Delphi rounds, however, this influence does not seem likely.\u003c/p\u003e \u003cp\u003eAlthough there are limitations to the sample size, there are particular strengths in regard to the sampling approach employed in the present study. First, the robust eligibility criteria the authors set to define healthcare experts provided an added layer of reliability to this study\u0026rsquo;s findings. Second, the present study only recruited experts within the UK, which fitted the purpose of the present study. Recruiting experts within the UK meant that these professionals have an intimate understanding and working knowledge of the current constraints, operations, legislature/policies, and culture associated with the NHS. Therefore, the content developed across the Delphi rounds that comprise the proposed model of care inherently reflected this; and the substantial eligibility criteria these experts met provides additional reliability to the findings.\u003c/p\u003e \u003cp\u003eThe present study had a strong rationale for employing open-ended questions in the first round, and it is worth noting that the qualitative process involved in analysing and generating statements was valuable if labour intensive. Considering this, we acknowledge the utility of other approaches used in Delphi studies such as employing focus groups or similar formats in creating statements for the initial Delphi survey (\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e). Another potential limitation in the present study related to the ranking of professional roles, despite not all of them achieving consensus. Expert responses to these items may have been affected by the separate Likert-scale used for professional roles. However, the ranking hierarchy was effectively equivalent in practice. Finally, although the present study was successful in building expert consensus to define and characterise the proposed model of care, the potential size of the service was not addressed and further details regarding staffing is needed. For example, although professional roles were identified and ranked, information on determining the required number and banding of each professional role based on population need would have been useful guidance to include.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec24\" class=\"Section2\"\u003e \u003ch2\u003eClinical Implications and Further Research\u003c/h2\u003e \u003cp\u003eThis study\u0026rsquo;s findings highlight the importance and effectiveness of working in well-designed integrated healthcare systems. Additionally, the results have implications for accrediting organisations responsible for overseeing the curriculum that is used in various professional training programmes (e.g., BPS, HCPC, RcPsych); suggesting training on the assessment, diagnosis and management of TD be included in their mandatory topics. Further research is needed to evaluate the process of implementing the proposed model of care. Some potential outcomes to consider include: staffing/banding based on population need; patient experience; throughflow; level of MDT-working; and effectiveness of protocols and/or treatment approaches.\u003c/p\u003e \u003cp\u003eAlthough the authors consider the employed sampling approach to be a strength and best fit for the purpose of the present study, it is important to acknowledge the utility of alternative sampling approaches. For example, future research would benefit from the inclusion of international experts. Although there are no existing UK clinical guidelines for TD, there are useful and in-depth clinical guidelines developed internationally (\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e). The present study aimed to define and characterise the content and structure of the proposed model of care. Consensus was gained on what the service should assess, and which interventions should be offered, but does not account for the clinical procedures and protocols involved in such processes. Thus, including international experts in future research would be beneficial for the alignment of the proposed service model with the current evidence-base.\u003c/p\u003e \u003c/div\u003e"},{"header":"Conclusion","content":"\u003cp\u003eThe present study successfully built consensus among healthcare experts to; define and characterise a specialised integrated NHS service model with a remit of assessing, diagnosing, and treating TD in CYP, and identify potential obstacles and facilitators to establishing and implementing the service model. Importantly, all components related to the proposed service model\u0026rsquo;s configuration, barriers and facilitators to implementation, and operation (i.e., age range, duration of input and interventions offered) achieved expert consensus. The findings from the present study provide an important first step toward addressing the absence of NICE guidelines and the significantly limited access to specialised services for CYP presenting with TD in the UK. Furthermore, the service model characterised in the present study highlights the importance of integrated working, which aligns with NHS Long-term Plans across the UK. Future research should consider evaluating the implementation process of the proposed model of care.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eCBIT\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eComprehensive Behavioural Intervention for Tics\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eCBT\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eCognitive Behavioural Therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eCYP\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eChildren and Young People\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eERP\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eExposure and Response Prevention\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eMDT\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eMulti-Disciplinary Team\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eNHS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eNational Health Service\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eNICE\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eNational Institute of Clinical Excellence\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eNIHR\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eNational Institute for Health Research\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eQOL\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eQuality of Life\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eTD\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eTic Disorders\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eTMS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eTranscranial Magnetic Stimulation\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eTS\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eTourette Syndrome\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"28.17258883248731%\" valign=\"top\"\u003e\n \u003cp\u003eUK\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"71.8274111675127%\" valign=\"top\"\u003e\n \u003cp\u003eUnited Kingdom\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u0026bull;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cstrong\u003eEthics approval and consent to participate:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe present study gained ethical approval from the School of Human and Behavioural Sciences Research Ethics Committee at Bangor University in the UK. All participants provided informed consent prior to any data collection.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eResearch Proposal number: 2022-17246\u003c/p\u003e\n\u003cp\u003e\u0026bull;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cstrong\u003eConsent for publication:\u003c/strong\u003e Consent obtained prior to participation\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026bull;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cstrong\u003eAvailability of data and materials:\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAll data generated or analysed during this study are included in this published article [and its supplementary information files].\u003c/p\u003e\n\u003cp\u003e\u0026bull;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cstrong\u003eCompeting interests:\u003c/strong\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\u003cp\u003e\u0026bull;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cstrong\u003eFunding:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAll funding was sourced internally through North Wales Clinical Psychology Programme, Bangor University\u003c/p\u003e\n\u003cp\u003e\u0026bull;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cstrong\u003eAuthors\u0026apos; contributions\u003c/strong\u003e (will need your help for this bit):\u003c/p\u003e\n\u003cp\u003eJK was the primary researcher responsible for conception, recruitment, design, analysis, report creation and write up. MJ provided doctoral supervision, aided in research, design and analysis processes. KM was responsible for preparation and draft of manuscript and substantive revision for publishing.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u0026bull;\u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp; \u0026nbsp;\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDr Chris Saville, Dr Maddie Groom and Dr Sophie Hall\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eAmerican Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition: DSM-5. 5th edition. 2013. 991.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEvans J, Seri S, Cavanna AE. The effects of Gilles de la Tourette syndrome and other chronic tic disorders on quality of life across the lifespan: a systematic review. Eur Child Adolesc Psychiatry. 2016;25(9):939\u0026ndash;48.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCavanna AE, Ganos C, Hartmann A, Martino D, Pringsheim T, Seri S. The cognitive neuropsychiatry of Tourette syndrome. Cognit Neuropsychiatry. 2020;25(4):254\u0026ndash;68.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eCox JH, Nahar A, Termine C, Agosti M, Balottin U, Seri S et al. Social stigma and self-perception in adolescents with tourette syndrome. Adolesc Health Med Ther. 2019;75\u0026ndash;82.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMalli MA, Forrester-Jones R. Stigma and Adults with Tourette\u0026rsquo;s Syndrome: Never Laugh at Other People\u0026rsquo;s Disabilities, Unless they have Tourette\u0026rsquo;s\u0026mdash;Because How Can You Not? J Dev Phys Disabil. 2022;34(5):871\u0026ndash;97.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEapen V, Cavanna AE, Robertson MM. Comorbidities, social impact, and quality of life in Tourette syndrome. Front Psychiatry. 2016;7:97.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eYadegar M, Guo S, Ricketts EJ, Zinner SH. Assessment and management of tic disorders in pediatric primary care settings. Curr Dev Disord Rep. 2019;6(3):159\u0026ndash;72.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSmith H, Fox JR, Trayner P. The lived experiences of individuals with Tourette syndrome or tic disorders: A meta-synthesis of qualitative studies. Br J Psychol. 2015;106(4):609\u0026ndash;34.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHollis C, Hall CL, Jones R, Marston L, Le Novere M, Hunter RM et al. Therapist-Supported Online Remote Behavioural Intervention for Tics (ORBIT) in Children and Adolescents: A Single-Blind Randomised Controlled Trial. 2021;8(10):871\u0026ndash;82.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBhikram T, Elmaghraby R, Abi-Jaoude E, Sandor P. An International Survey of Health Care Services Available to Patients With Tourette Syndrome. Front Psychiatry. 2021;12:621874.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWelsh Government. Written Statement: Improvements in Neurodevelopmental Conditions Services. GOV.WALES. 2022: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://gov.wales/written-statement-improvements-neurodevelopmental-conditions-services\u003c/span\u003e\u003cspan address=\"https://gov.wales/written-statement-improvements-neurodevelopmental-conditions-services\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. Accessed 19 Aug 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNHS. NHS Long Term Plan: Priorities and Operational Planning Guidance 2023/24. 2023. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.england.nhs.uk/wp-content/uploads/2022/12/PRN00021-23-24-priorities-and-operational-planning-guidance-v1.1.pdf\u003c/span\u003e\u003cspan address=\"https://www.england.nhs.uk/wp-content/uploads/2022/12/PRN00021-23-24-priorities-and-operational-planning-guidance-v1.1.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. Accessed 19 Aug 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eScottish Gov, Recovery Plan NHS. 2021\u0026ndash;2026. 2021. NHS Recovery Plan 2021\u0026ndash;2026 The Scottish Government. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.gov.scot/binaries/content/documents/govscot/publications/strategy-plan/2021/08/nhs-recovery-plan/documents/nhs-recovery-plan-2021-2026/nhs-recovery-plan-2021-2026/govscot%3Adocument/nhs-recovery-plan-2021-2026.pdf\u003c/span\u003e\u003cspan address=\"https://www.gov.scot/binaries/content/documents/govscot/publications/strategy-plan/2021/08/nhs-recovery-plan/documents/nhs-recovery-plan-2021-2026/nhs-recovery-plan-2021-2026/govscot%3Adocument/nhs-recovery-plan-2021-2026.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. Accessed 19 Aug 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWelsh Gov. NHS Wales Planning Framework 2022\u0026ndash;2025. 2022. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.gov.wales/sites/default/files/publications/2021-11/nhs-wales-planning-framework-2022-2025_0.pdf\u003c/span\u003e\u003cspan address=\"https://www.gov.wales/sites/default/files/publications/2021-11/nhs-wales-planning-framework-2022-2025_0.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e. Accessed 20 Aug 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eKeeney S. The Delphi Technique in Nursing and Health Research. Wiley-Blackwell; 2011.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDalkey N, Helmer O. An Experimental Application of the DELPHI Method to the Use of Experts. Manag Sci. 1963;9(3):458\u0026ndash;67.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSpranger J, Homberg A, Sonnberger M, Niederberger M. Reporting guidelines for Delphi techniques in health sciences: A methodological review. Z F\u0026uuml;r Evidenz Fortbild Qual Im Gesundheitswesen. 2022. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.zefq.2022.04.025\u003c/span\u003e\u003cspan address=\"10.1016/j.zefq.2022.04.025\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNiederberger M, Spranger J. Delphi technique in health sciences: a map. Front Public Health. 2020;8:457.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHowarth E, Vainre M, Humphrey A, Lombardo C, Hanafiah AN, Anderson JK, et al. Delphi study to identify key features of community-based child and adolescent mental health services in the East of England. BMJ Open. 2019;9(6):e022936.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSezgin D, O\u0026rsquo;Caoimh R, O\u0026rsquo;Donovan MR, Salem MA, Kennelly S, Samaniego LL, et al. Defining the characteristics of intermediate care models including transitional care: an international Delphi study. Aging Clin Exp Res. 2020;32(11):2399\u0026ndash;410.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eHenderson EJ, Rubin GP. Development of a community-based model for respiratory care services. BMC Health Serv Res. 2012;12(1):1\u0026ndash;10.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eJ\u0026uuml;nger S, Payne SA, Brine J, Radbruch L, Brearley SG. Guidance on Conducting and REporting DElphi Studies (CREDES) in palliative care: Recommendations based on a methodological systematic review. Palliat Med. 2017;31(8):684\u0026ndash;706.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRand SL. A common procedure for using the Kinetic Family Drawing (KFD) in educational psychology practice: an exploratory study using the Delphi method]. University of Essex \u0026amp; Tavistock and Portman NHS Foundation Trust; 2020. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://repository.essex.ac.uk/28531/1/Sarah%20Rand%20-%20Thesis%20V1%20July%202020.pdf\u003c/span\u003e\u003cspan address=\"https://repository.essex.ac.uk/28531/1/Sarah%20Rand%20-%20Thesis%20V1%20July%202020.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e Accessed 25 Aug 2022.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFink-Hafner D, Dagen T, Doušak M, Novak M, Hafner-Fink M. Delphi method: strengths and weaknesses. Adv Methodol Stat. 2019;16(2):1\u0026ndash;19.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSinha IP, Smyth RL, Williamson PR. Using the Delphi technique to determine which outcomes to measure in clinical trials: recommendations for the future based on a systematic review of existing studies. PLoS Med. 2011;8(1):e1000393.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTaylor E. We agree, don\u0026rsquo;t we? The Delphi method for health environments research. HERD Health Environ Res Des J. 2020;13(1):11\u0026ndash;23.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNIHR. New Models of Care - What\u0026rsquo;s the Evidence? [Internet]. 2019. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.strategyunitwm.nhs.uk/sites/default/files/2019-03/New%20Models%20of%20Care%20-%20What%27s%20the%20evidence%20FINAL.pdf\u003c/span\u003e\u003cspan address=\"https://www.strategyunitwm.nhs.uk/sites/default/files/2019-03/New%20Models%20of%20Care%20-%20What%27s%20the%20evidence%20FINAL.pdf\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDavis SF, Hinde S, Ariss S. Complex programme evaluation of a \u0026lsquo;new care model\u0026rsquo;vanguard: a shared commitment to quality improvement in an integrated health and care context. BMJ Open. 2020;10(3):e029174.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBelton I, MacDonald A, Wright G, Hamlin I. Improving the practical application of the Delphi method in group-based judgment: A six-step prescription for a well-founded and defensible process. Technol Forecast Soc Change. 2019;147:72\u0026ndash;82.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMeijering JV, Tobi H. The effect of controlled opinion feedback on Delphi features: Mixed messages from a real-world Delphi experiment. Technol Forecast Soc Change. 2016;103:166\u0026ndash;73.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBarrios M, Guilera G, Nu\u0026ntilde;o L, G\u0026oacute;mez-Benito J. Consensus in the delphi method: What makes a decision change? Technol Forecast Soc Change. 2021;163:120484.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTaylor E. We agree, don\u0026rsquo;t we? The Delphi method for health environments research. HERD Health Environ Res Des J. 2020;13(1):11\u0026ndash;23.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePringsheim T, Okun MS, M\u0026uuml;ller-Vahl K, Martino D, Jankovic J, Cavanna AE, et al. Practice guideline recommendations summary: treatment of tics in people with Tourette syndrome and chronic tic disorders. Neurology. 2019;92(19):896\u0026ndash;906.\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMathews CA. Treating Tourette syndrome and other chronic tic disorders: updated guidelines by the European society for the study of Tourette syndrome (ESSTS). Eur Child Adolesc Psychiatry. 2022;1\u0026ndash;2.\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":true,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"Tics, Tic Disorders, Tourette Syndrome, Children, Young People, Delphi Study","lastPublishedDoi":"10.21203/rs.3.rs-4835394/v2","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4835394/v2","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003ch2\u003eBackground\u003c/h2\u003e \u003cp\u003eThe prevalence of Tic Disorders (TD) in Children and Young People (CYP) approaches 3%, indicating TD to be more common than previously believed. However, in the United Kingdom, access to National Healthcare Services (NHS) with a remit for the assessment, diagnosis and management of TD in CYP remains severely limited. The present study aimed to build consensus among healthcare experts to define and characterise a realistic service model of care with a remit of assessing, diagnosing, and treating TD in CYP; and to identify potential obstacles and facilitators to establishing and implementing this service model.\u003c/p\u003e\u003ch2\u003eMethods\u003c/h2\u003e \u003cp\u003eA panel of experts (\u003cem\u003eN\u003c/em\u003e\u0026thinsp;=\u0026thinsp;10) participated in a three-round e-Delphi study. All surveys were completed online. In Round 1, experts provided free-text responses to 7 open-ended questions. Researchers qualitatively processed responses and generated 28 statements which comprised the Round 2 survey. Participants rated statements on relative agreement and/or importance, items that reached consensus were not included in subsequent survey. Controlled feedback of individual and group responses was displayed for participants in Round 3.\u003c/p\u003e\u003ch2\u003eResults\u003c/h2\u003e \u003cp\u003eExpert consensus was gained on statements pertaining to; service configuration, constraints and obstacles to service development and delivery, age-range and duration of service input, and interventions for service to offer. A ranking hierarchy identifying prioritised professional roles for newly commissioned services was created.\u003c/p\u003e\u003ch2\u003eConclusions\u003c/h2\u003e \u003cp\u003eThe present study successfully built consensus among healthcare experts for a specialised NHS service model of care for the treatment of TD in CYP. Findings included identifying potential aids and barriers for implementation and highlight the importance of multi-disciplinary team-working and integrated care. Importantly, the present study further emphasises the need for the systematic development of clinical guidelines for TD by the National Institute of Clinical Excellence (NICE).\u003c/p\u003e","manuscriptTitle":"Defining and Characterising a Model of Care for the Assessment, Diagnosis and Management of Tic Disorders in Children and Young People: A Delphi Study","msid":"","msnumber":"","nonDraftVersions":[{"code":2,"date":"2025-12-18 16:59:25","doi":"10.21203/rs.3.rs-4835394/v2","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}},{"code":1,"date":"2024-08-29 14:52:16","doi":"10.21203/rs.3.rs-4835394/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"7c67982c-5321-4838-addb-6cb70dda2296","owner":[],"postedDate":"December 18th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2025-10-01T07:39:54+00:00","versionOfRecord":[],"versionCreatedAt":"2025-12-18 16:59:25","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v2","identity":"rs-4835394","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4835394","identity":"rs-4835394","version":["v2"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}

Text is read by the "Ask this paper" AI Q&A widget below. Extraction quality varies by source — PMC NXML preserves structure cleanly, OA-HTML may include some navigation residue, and OA-PDF can have broken hyphenation. The publisher copy (via DOI) is the canonical version.

My notes (saved in your browser only)

Ask this paper AI returns verbatim quotes from the full text · source: preprint-html

Answers must be backed by verbatim quotes from this paper's full text. Hallucinated quotes are dropped automatically; if no verbatim passage answers the question, we say so. How this works

Citation neighborhood (no data yet)

We don't have any in-corpus citations linked to this paper yet. This is a recent paper (2025) — citers typically take a year or two to land, and the OpenAlex reference graph may still be filling in.

Source provenance

europepmc
last seen: 2026-05-20T01:45:00.602351+00:00