Delphi consensus on the transition from pediatric to adult care in Italian ADHD youth

Delphi consensus on the transition from pediatric to adult care in Italian ADHD youth | 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 Delphi consensus on the transition from pediatric to adult care in Italian ADHD youth Elisa Roberti, Antonio Clavenna, Eleonora Basso, Francesca Scarpellini, and 4 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-5677237/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 23 Jul, 2025 Read the published version in European Child & Adolescent Psychiatry → Version 1 posted 10 You are reading this latest preprint version Abstract This study aimed to develop consensus-based recommendations for improving the transition of care for young adults with Attention-deficit/hyperactivity disorder (ADHD) from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) in Italy. A modified Delphi consensus method was employed, involving 27 stakeholders, including child psychiatrists, psychiatrists, psychologists, primary care physicians, young adults with ADHD, and parents. Recommendations were drafted by combining data from prior phases of the Transition in Diabetes, Epilepsy, and ADHD patients (TransiDEA) project and international guidelines (e.g., NICE, Ready Steady Go). Stakeholders evaluated 33 proposed recommendations across two rounds, rating their relevance and feasibility. Consensus was defined as ≥ 75% agreement per item. Consensus was achieved on 22 recommendations organized into four categories: planning (14 items), passage (4 items), monitoring (1 item), and services (3 items). Key recommendations included starting transition planning at age 16, involving families and interdepartmental teams, implementing practical tools for information exchange, and monitoring patient outcomes post-transition. Training for clinicians and service self-assessment were emphasized to address systemic barriers. The final shared recommendations integrate multiple perspectives and international best practices and provide a structured, adaptable framework for improving ADHD care transitions in Italy. Future efforts should evaluate their implementation and expand the methodology to other neurodevelopmental conditions. Transition care ADHD Delphi consensus Shared recommendations Introduction Attention-deficit/hyperactivity disorder (ADHD) is marked by persistent symptoms of inattention and/or hyperactivity and impulsivity, diagnosed mainly at the entrance of primary school [ 1 , 2 ]. In childhood, ADHD affects school performance and interactions with peers; moreover, the frequent comorbidity with other mental disorders, such as conduct and depressive disorders, can greatly affect every day functioning. This is why many forms of treatment are focused either on a behavioral (e.g., behavioral management techniques, parent/teacher training, psychotherapy), pharmacological (e.g., methylphenidate, atomoxetine), or integrated perspective. With time, individuals can acquire good control of their symptoms, and, already during adolescence, ADHD follows a more predictable pattern [ 3 ]. For this reason, the common misconception is that symptoms decrease and disappear during adulthood. Yet, many characteristics of the disorder are still present [ 4 ]. Frequently, antisocial behavior and even criminal activities can be found in those who had externalizing symptoms and aggressive behavior in childhood, while anxiety, depressive disorders, and substance/alcohol abuse are more common complications [ 5 ]. A recent study by the Italian Transition in Diabetes, Epilepsy, and ADHD patients (TransiDEA) study group described the characteristics of young adults in the three years after turning 18. A Survey conducted in 2022 (phase 1) and interviews and questionnaires collected in 2023 (phase 2) described the transition pathways in terms of continuity of care, well-being indicators, and perceived experiences from the perspective of both young adults with ADHD and their clinicians. The main findings and open questions are reported in Box 1 . It was observed that non-referred patients presented several sentinel events, such as access to emergency rooms following car accidents, drunk driving episodes or fights, relational and attentional difficulties, impulsivity, anxiety, and unemployment [ 6 ]. These issues could potentially affect 50% of young adults with ADHD turning 18 each year since almost half of them are lost by the healthcare system [ 6 , 7 ]. Yet, the survey conducted within the same study [ 8 ] revealed that while 74% of the Child and Adolescent Mental Health Services (CAMHS) followed transitioning patients in the previous year, only 43% of the Adult Mental Health Services (AMHS) received patients. Only a minority of the services (32%) had a transition protocol to structure the path, and even less planned a monitoring phase (12%). This means that many patients still get lost in the process. These results are in accordance with what is also reported in other nations [ 9 – 11 ]. While intervening in some economic and administrative issues, such as the lack of resources, is less viable, work can be done on the organizational side. Providing clear and implementable guidelines with few resources can facilitate smooth transition processes. Some guidelines exist at an international level (e.g., the National Institute for Clinical Health and Excellence - NICE - Transition Guidelines and the Ready Steady Go program in the U.K., The Six Core Elements in the U.S.A.) [ 12 – 14 ]; however, their application in practice is complex [ 15 ], and, even after adjustment, they have still not been adopted in many countries. The definition of shared recommendations is a particular priority in Italy, where the estimated ADHD prevalence in youth ranges from 1.1 to 3.1% [ 16 ]. The need for shared recommendations, guided as much as possible by scientific evidence and the needs arising from clinical practice and patients' experience, however, is still unmet. The present study (phase 3 of the TransiDEA project) aimed to define a consensus document to be adopted in Italian services. In particular, the goal was to provide a tool tailored to the practical needs and resources of the Italian services through an adaptation of the main international guidelines based on the results obtained during phase 1 and 2 of the TransiDEA project. Several studies attempted a similar approach for youth with several healthcare needs. The core elements included early planning, individualized paths (e.g., flexible age cut-offs based on the patients' and families' needs), training in transitional care issues for clinicians, and ensuring follow-up and support after transition [ 17 , 18 ]. What was often neglected was the point of view of the people directly involved in the process (i.e., patients, families, clinicians). In this study, we asked the stakeholders of the ADHD transition process to give feedback on possible or existing transition guidelines. Methods A modified Delphi consensus study was designed and conducted between February and May 2024. This method formalizes the involvement of experts from a multidisciplinary background by asking them to express an informed opinion on a specific topic to reach a consensus on the core aspects. This approach is often used to form standards and guidelines (e.g., [ 19 – 22 ]). In the case of ADHD, very few studies employed this method, and did so mainly to detect outcomes of treatment and possible clinical guidelines for screening, diagnosis, and treatment [ 23 , 24 ], to design adequate neuropsychological assessment tools [ 25 ], and to investigate the psychoeducational needs of adults with ADHD [ 26 ]. The goal of this consensus conference was to identify the main elements that, according to all those involved in the transition process, should be included in truly implementable shared recommendations. Leveraging direct experiences should lead to better management of the transition, and thus to the greater well-being of young adults and families, as well as to a decrease in loss of ADHD patients by the public health system. Twenty-seven figures divided into 5 groups (4 child psychiatrists, 6 psychiatrists, 5 psychologists, 7 members of scientific societies and associations or primary care physicians, 2 patients, and 3 parents) were identified and invited. The first version of the document containing possible recommendations was drafted by analyzing the following main international guidelines: NICE "Transition from children's to adults' services" Quality Standard Recommendations ( https://www.nice.org.uk/guidance/QS140 ) [ 27 ]. Ready, Steady, Go ( https://www.readysteadygo.net/rsg.html ) [ 23 ]. THE SIX CORE ELEMENTS OF HEALTH CARE TRANSITION (Got Transition®) [ 28 ]. The items to be included in the consensus were then further integrated with information gathered during the first two phases of the TransiDEA project [ 6 , 29 , 30 ]. The first draft comprised 26 statements that encompassed the following aspects: timeline of meetings and passage; space to inform youth and their families and answer their questions; inter-service communication; practical tools to facilitate information exchange during the transition; monitoring young adults' care paths after transition; methods of self-assessment of services to improve future transition pathways. Each panel member was asked to respond to an online questionnaire containing 33 items (some of the 26 statements included multiple items) that were potentially part of transition recommendations. They were then asked to indicate how much each agreed (on a scale of 1 = not at all agree to 5 = very much agree) about the usefulness of each item in daily service practice. Spaces were also provided for writing notes and comments, indicating that any observations would be valuable in the discussion phase. The full text of the first draft is available as Appendix A . Once each round of compilations was completed, agreement was measured as the percentage of respondents who gave each item a score of 1 or 2 (disagree) or 4 or 5 (agree). A 75% agreement/disagreement limit was chosen a priori to represent positive or negative agreement, respectively [ 22 ]. Items that did not reach a significant agreement were modified according to the panelists' comments. Notes and comments could also be used to edit items in case of high agreement if they were helpful for better wording. Results Two rounds were carried out before reaching a sufficient agreement. After the first round , the overall agreement reported was greater than 75% for 25 items and less than 75% for 8 items (see Appendix B , Table 1). The agreement was also analyzed by comparing two groups: groups 1–3, including the clinical stakeholders (child psychiatrists, psychiatrists, and psychologists), and groups 4–5, including the other actors involved in the process (associations, scientific societies, children, and parents). For 17 items, agreement was high for both groups; for 13 items, agreement was high only for groups 4–5; for 1 item, agreement was high only for groups 1–3. For only 2 items (9 and 26b), the agreement was less than 75% for both groups. Only one statement was not changed. The other statements were: improved based on useful comments provided (N = 12); modified based on low ratings and comments (N = 10); deleted and merged with others (N = 3). The first round's results were then presented to the panel, accompanied by suggested rephrasing for those 23 statements for which the consensus reached was low or valuable suggestions for implementation were given in the comments. Since the initial items referred to practical tools, a copy of those tools was also provided. Each panel member was then asked to view the changes and indicate agreement or change suggestions. Twenty-six responses were collected (it was not possible to obtain a response from only one of the patients). After the second round , a high agreement (> 80%) was observed for all groups for all items (see Appendix B , Table 2). 8 items were not further modified in the second round. Additional small changes made to the remaining items were: improved based on useful comments (N = 14); deleted and merged with the previous one (N = 1). Final document The final document contains 22 statements, divided into four sections: planning (14 items); passage (4 items); monitoring (1 item); services (3 items). The final document is available in Box 2 below. Moreover, the original Shared Final Recommendations and all the tools designed are available in Italian on the website https://transitioncare.marionegri.it/pubblicazioni/ . Discussion and Conclusions The final document resulted from the three phases of the TransiDEA project. The first phase provided important information on organizational and inter-service communication issues. The final document itself (with most of the recommendations referring to the preparation phase) emphasizes the fundamental importance of effective planning for successful transition processes. The panel's first point discussed was the age at which to begin transition preparation. The starting point of 16 years was chosen since the pathways analyzed during phase 2 showed that transition preparation rarely starts before age 17, yet patients themselves stated that they would need more time (at least 6 months more). From round 1, there was 89% agreement, indicating that earlier transition planning would be desirable for everyone. Personalized transition planning was also deemed essential, with more discussion about which elements to use in personalizing the transition. The need, foreseen by the Italian law, for each service to keep in mind the patient's change in legal status upon reaching the age of 18 in the certifications and documentation it collects was also mentioned. The most debated point was how to distribute the transition meetings over time and who to include in each one of those. Regarding the initial proposal to hold meetings every 6 months (about four meetings from age 16 onwards), some commented that it would be too many. In contrast, others suggested keeping it as a minimum number but, where possible, organizing even more meetings. The compromise on which an agreement was reached was that it would be optimal to schedule at least three meetings before the actual transition. It also emerged as crucial that all those involved in the transition process should be involved in these meetings, including families (although not everyone necessarily needs to be simultaneously present at all meetings). At least two meetings should be held only by the two services, the CAMHS and the identified AMHS. Another item for which there was a low agreement was the one that defined the need to complete the transition by the time the child reaches the age of 18, while allowing for cases in which it is deemed necessary to postpone the transfer. Opinions were mixed on this part, with some advocating the need not to delay the transfer and some suggesting that the transition should also be planned to consider specific needs related to the stage of life, such as attendance and completion of school. Despite this, regulatory constraints do not allow for too much flexibility in this regard, so the final recommendations specified: "Upon reaching the age of 18, the transition should not be delayed except in exceptional cases and for a short period based on the assessment of the clinical picture, life stage needs (e.g., school completion), and the level of readiness for transition by both the young person and the services." The observations of the group of experts involved in this study once again confirmed what emerged from the entire TransiDEA project: organizational and resource problems currently hinder the transition process. For example, the figure of the "named worker" (as defined in the NICE Recommendations), i.e., the worker in charge of coordinating assistance during the transition in all its phases, was immediately recognized as crucial. In the comments, however, this figure was referred to as an "ideal situation" that is "not very feasible." Similarly, the use of tools (inter-service care agreement, transition readiness questionnaires, registry made available to service providers to monitor patient pathways) is described as "desirable", but accompanied by the observation that no such tools appear to be available to date and that possible organizational shortcomings (related to time, staffing, etc.) could hinder their use. Nonetheless, the final recommendations include such tools, with the intent for them to be available should they be needed. In addition, an attempt was made to limit them to quick questionnaires that can be filled out, used as an outline guide during the meetings, or provided to the young adults as prompts for reflection. The hope is that these tools will contribute to the perception of a more structured and guided path. Next, regarding monitoring and follow-up meetings, the panel members' comments led to the definition that the AMHS should notify the CAMHS of any unsuccessful referral. This should be done for two reasons: first, to provide a way for CAMHS to improve their transition processes, and second, to provide the young person with an alternative care pathway where there is a need. Similarly, holding a monitoring meeting 6 months after the transition would be desirable, gathering feedback from youth and clinicians. Each service is also encouraged to periodically evaluate the outcome of individual transitions and the overall service to improve their transition processes. This suggestion involves taking into consideration both the youths’ views on the matter and service-related data (e.g., the number of youth who continue to be in the care of AMHS 1 year after transfer vs. the number of expected patients; the number of youth who do not attend the first meeting vs. the number of expected patients). Finally, especially from phase 1 of the project, a need for more training on the transition topic emerged for CAMHS and AMHS clinicians. Therefore, a recommendation was included in the final document that each service should train its practitioners on the appropriate management of the ADHD patient, centering on all essential aspects: therapy, clinical, epidemiology, treatments, interactions with other services, and management of family members. The present study can potentially encourage the territorial realities of different nations to do the same. Moreover, a single tool was made available to all Italian services for the first time, trying to overcome the current heterogeneous and poorly regulated management of transition processes. The strength of the recommendations is that the indications expressed will be applied in practice. A specific survey aimed to check their outcome in the future will be planned. The study was conducted under the aegis of the Italian Ministry of Health; it will therefore also be an institutional responsibility that the recommendations are known and that adequate resources are provided for them to be applied throughout the national territory. In the future, a similar methodology may also be extended to the transition from pediatric to adult care in the case of other neurodevelopmental disorders or medical conditions. In conclusion, by putting together the multiple perspectives brought by the multidisciplinary panel (young adults with ADHD, clinicians, family members, and association members) and the observations gathered through research methods (surveys, interviews, questionnaires), a document that offers a chance to organize future transition pathways in a thoughtful and participatory manner was defined. The practical tools provided offer a possibility for information sharing in the hope of empowering young adults to have all their questions answered and clinicians to monitor pathways and overcome organizational burdens. Declarations Acknowledgments: We would like to thank the TransiDEA Group members: Transidea ADHD Panel Group : Matteo A. Chiappedi (U.O.S. Neuropsichiatria Infantile di Vigevano, ASST Pavia); Maddalena Duca (UOC Neuropsichiatria Infantile Ospedale di Macerata); Simone Pisano (Dipartimento di Scienze Mediche Traslazionali Università Federico II di Napoli); Valeria Tessarollo (Neurospichiatria Infantile, ASST Santi Paolo e Carlo, Milano); Corrado Barbui (Dipartimento di Neuroscienze, Biomedicina e Movimento, Università di Verona); Angelo Bertani (Servizio Diagnosi e Cura, Reparto Psichiatria, ASST Santi Paolo e Carlo, Milano); Felice Iasevoli (Azienda Ospedaliera Universitaria Federico II, Napoli); Chiara Resentera (Centro Psicodiagnostico Italiano, Milano); Michele Servasi (Ospedali Riuniti delle Marche – Ancona); Ilaria Costantino (Neuropsichiatria Infantile, ASST Santi Paolo e Carlo, Milano); Claudia Giordani (UOC Neuropsichiatria Infantile Ospedale di Macerata); Simona Travellini (Università degli Studi di Urbino "Carlo Bo"); Olimpia Riccioni (Università degli Studi di Napoli Federico II); Silvia Romeo (Centro Psicodiagnostico Italiano, Milano); Marina Bianchi (ATS Città Metropolitana, Milano); Elisa Colombi (Società Italiana di Neuropsichiatria dell'Infanzia e dell'Adolescenza – SINPIA, Azienda Sanitaria Locale CN2 Alba – Bra, Cuneo); Andreas Conca (Azienda Sanitaria dell'Alto Adige, Bolzano; Società Italiana di Psichiatria - SIP); Marco Cecchi (Associazione Nazionale Infermieri Neuroscienze - ANIN); Carmen Gigliotti (Abilitiamo Autismo Onlus, Cantù); Astrid Gollner (Associazione Italiana Famiglie ADHD - AIFA APS); Cristina Lemme (ADHD Italia); Federica Zanetto (ATS Brianza ; Associazione Culturale Pediatri - ACP); Chiara Gori; Elena Rota; M. D. R.; S.G.; M. M. Coordinating and Managing Group : Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Milan, Italy: Maurizio Bonati, Antonio Clavenna, Francesca Scarpellini, Elisa Roberti, Rita Campi, Massimo Cartabia, Michele Giardino, Michele Zanetti, Maria Grazia Calati; Diabetes (D): AUSL della Romagna, Ravenna, Italy: Vanna Graziani, Federico Marchetti, Tosca Suprani; Santa Maria delle Croci Hospital, Ravenna, Italy: Paolo Di Bartolo; Epilepsy (E): ASST Santi Paolo e Carlo – Ospedale San Paolo, Milano: Maria Paola Canevini, Ilaria Viganò; ADHD (A): ASST Santi Paolo e Carlo – Ospedale San Paolo, Milano: Ilaria Costantino, Valeria Tessarollo; University of Milan, Milan, Italy: Eleonora Basso. The authors would also like to acknowledge Chiara Pandolfini for language editing, and Maria Grazia Calati for the secretarial management. Author contributions: Maurizio Bonati conceptualized the study with the help of the TransiDEA Group; Maurizio Bonati, Antonio Clavenna, Elisa Roberti and Francesca Scarpellini curated methodology; Rita Campi, Michele Giardino, and Michele Zanetti curated resources; Elisa Roberti and Eleonora Basso contributed to the collection of information through drafting the items and coordinating the Delphi panel; Elisa Roberti and Antonio Clavenna carried out data analysis; Elisa Roberti wrote the original manuscript draft; Maurizio Bonati, Francesca Scarpellini and Antonio Clavenna reviewed and edited the manuscript. Maurizio Bonati supervised the project. All authors have read and agreed to publish the current version of the manuscript. Statements and Declarations Competing Interests: The authors have no relevant financial or non-financial interests to disclose. Funding: This research is part of the project "Transition care between adolescent and adult services for young people with chronic health needs in Italy", funded by the Italian Ministry of Health (RF-2019-12371228). Ethics approval : The study is part of a wider project (" Transition care between adolescent and adult services for young people with chronic health needs in Italy", RF-2019-12371228 ) that was approved by the IRCCS "Carlo Besta" Ethics Committee (ethics committee of reference for the Mario Negri IRCCS Institute) (8 September 2021, protocol n. 87). Data availability statement: The data presented in this study are available on the Zenodo platform (https://doi.org/10.5281/zenodo.11545847). The materials produced (Shared recommendations and appendices) are available online (in Italian) on the following website: https://transitioncare.marionegri.it/pubblicazioni/. References Cormier E (2008) Attention Deficit/Hyperactivity Disorder: A Review and Update. 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J Pediatr Nurs 30:700–713 Roberti E, Scarpellini F, Campi R, Giardino M, Clavenna A, Bonati M Transitioning to Adult Mental Health Services for young people with ADHD: an Italian-based Survey on practices for Pediatric and Adult Services [Internet]. In Review; 2023 Jan. Available from: https://www.researchsquare.com/article/rs-2470407/v1 Roberti E, Scarpellini F, Campi R, Giardino M, Clavenna A, Bonati M (2023) Apr Protocols for transitioning to adult mental health services for adolescents with ADHD [Internet]. Public Health and Healthcare; Available from: https://www.preprints.org/manuscript/202304.0055/v1 Box Box 1 and 2 are available in the Supplementary Files section. Additional Declarations No competing interests reported. Supplementary Files APPENDIXABTransiDEA3ECAP.docx Box12.docx Cite Share Download PDF Status: Published Journal Publication published 23 Jul, 2025 Read the published version in European Child & Adolescent Psychiatry → Version 1 posted Editorial decision: Revision requested 21 Apr, 2025 Reviews received at journal 29 Mar, 2025 Reviews received at journal 01 Mar, 2025 Reviewers agreed at journal 27 Feb, 2025 Reviewers agreed at journal 20 Feb, 2025 Reviewers agreed at journal 20 Feb, 2025 Reviewers invited by journal 20 Feb, 2025 Editor assigned by journal 20 Dec, 2024 Submission checks completed at journal 20 Dec, 2024 First submitted to journal 19 Dec, 2024 You are reading this latest preprint version 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. 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Roberti","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABE0lEQVRIiWNgGAWjYDACdsYGMG0AIhIqgAQzRIIHxsAAzAgtjA0JZ1C04NADEwZrYWzDKocK+JmZmz/8YLgnZ87e+/zBw3nb5M3bmY89+PDrngwDO/8BbFokmxnbJHsYio0te44bNiRuu2045zBbuuHMvmKcDjM4DHQMD0NC4oYbaYwgLYwzmHnMpHl7EnBqsT/M2PzxD0jL/WdALXNu24O1/MWjxQAYYtIQW9iAWhpuJ4K1MPzArUUC6DBpGYMEoF/SGGckHLudPIOZLU2ytyGBh42Z2QBriLW3P/74piIBGGLHGD7+qLltO4P/8DGJH38S7Pn5Dz7Aag3EeegCoAhiw60eK/hDovpRMApGwSgYzgAAkLZWWzc8D+EAAAAASUVORK5CYII=","orcid":"","institution":"Istituto di Ricerche Farmacologiche Mario Negri IRCCS","correspondingAuthor":true,"prefix":"","firstName":"Elisa","middleName":"","lastName":"Roberti","suffix":""},{"id":445927212,"identity":"8dc8ae9b-bcf3-4f0f-b7e3-eec9782bc68d","order_by":1,"name":"Antonio Clavenna","email":"","orcid":"","institution":"Istituto di Ricerche Farmacologiche Mario Negri IRCCS","correspondingAuthor":false,"prefix":"","firstName":"Antonio","middleName":"","lastName":"Clavenna","suffix":""},{"id":445927215,"identity":"d353aaa2-484d-485f-90f6-c8168bea1d54","order_by":2,"name":"Eleonora Basso","email":"","orcid":"","institution":"ASST Santi Paolo e Carlo, Università degli Studi di Milano","correspondingAuthor":false,"prefix":"","firstName":"Eleonora","middleName":"","lastName":"Basso","suffix":""},{"id":445927218,"identity":"16f0e901-9434-43a7-b755-f38fe4d01882","order_by":3,"name":"Francesca Scarpellini","email":"","orcid":"","institution":"Centro Psicodiagnostico Italiano","correspondingAuthor":false,"prefix":"","firstName":"Francesca","middleName":"","lastName":"Scarpellini","suffix":""},{"id":445927220,"identity":"780c87b8-a25b-443e-b53b-52b82f112b2e","order_by":4,"name":"Rita Campi","email":"","orcid":"","institution":"Istituto di Ricerche Farmacologiche Mario Negri IRCCS","correspondingAuthor":false,"prefix":"","firstName":"Rita","middleName":"","lastName":"Campi","suffix":""},{"id":445927225,"identity":"0ac4a8ac-04e6-4cda-b690-02715a615291","order_by":5,"name":"Michele Giardino","email":"","orcid":"","institution":"Istituto di Ricerche Farmacologiche Mario Negri IRCCS","correspondingAuthor":false,"prefix":"","firstName":"Michele","middleName":"","lastName":"Giardino","suffix":""},{"id":445927227,"identity":"b96a30bb-b359-4e9f-9393-254f045e63e7","order_by":6,"name":"Michele Zanetti","email":"","orcid":"","institution":"Istituto di Ricerche Farmacologiche Mario Negri IRCCS","correspondingAuthor":false,"prefix":"","firstName":"Michele","middleName":"","lastName":"Zanetti","suffix":""},{"id":445927229,"identity":"9c3e01aa-1977-45f6-9375-ee66f79c65f2","order_by":7,"name":"Maurizio Bonati","email":"","orcid":"","institution":"Istituto di Ricerche Farmacologiche Mario Negri IRCCS","correspondingAuthor":false,"prefix":"","firstName":"Maurizio","middleName":"","lastName":"Bonati","suffix":""}],"badges":[],"createdAt":"2024-12-19 13:38:27","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-5677237/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-5677237/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s00787-025-02810-w","type":"published","date":"2025-07-23T15:57:26+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":87756836,"identity":"ba35e0d8-bfe1-4e61-a056-97c3e754cee3","added_by":"auto","created_at":"2025-07-28 16:09:31","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":484986,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-5677237/v1/6240e9f7-c44e-4efb-9be5-09ba30ebb512.pdf"},{"id":81655302,"identity":"89126db9-3523-4c89-aca8-765ab6ad0016","added_by":"auto","created_at":"2025-04-29 18:01:25","extension":"docx","order_by":0,"title":"","display":"","copyAsset":false,"role":"supplement","size":59371,"visible":true,"origin":"","legend":"","description":"","filename":"APPENDIXABTransiDEA3ECAP.docx","url":"https://assets-eu.researchsquare.com/files/rs-5677237/v1/ca01035f9bf28701ed5451b8.docx"},{"id":81655301,"identity":"f95e1ceb-536b-47f9-b758-3e11c9a5d7a4","added_by":"auto","created_at":"2025-04-29 18:01:25","extension":"docx","order_by":2,"title":"","display":"","copyAsset":false,"role":"supplement","size":24898,"visible":true,"origin":"","legend":"","description":"","filename":"Box12.docx","url":"https://assets-eu.researchsquare.com/files/rs-5677237/v1/2e56550015fa1b8bed17a3d7.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Delphi consensus on the transition from pediatric to adult care in Italian ADHD youth","fulltext":[{"header":"Introduction","content":"\u003cp\u003eAttention-deficit/hyperactivity disorder (ADHD) is marked by persistent symptoms of inattention and/or hyperactivity and impulsivity, diagnosed mainly at the entrance of primary school [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. In childhood, ADHD affects school performance and interactions with peers; moreover, the frequent comorbidity with other mental disorders, such as conduct and depressive disorders, can greatly affect every day functioning. This is why many forms of treatment are focused either on a behavioral (e.g., behavioral management techniques, parent/teacher training, psychotherapy), pharmacological (e.g., methylphenidate, atomoxetine), or integrated perspective.\u003c/p\u003e \u003cp\u003eWith time, individuals can acquire good control of their symptoms, and, already during adolescence, ADHD follows a more predictable pattern [\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e]. For this reason, the common misconception is that symptoms decrease and disappear during adulthood. Yet, many characteristics of the disorder are still present [\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e]. Frequently, antisocial behavior and even criminal activities can be found in those who had externalizing symptoms and aggressive behavior in childhood, while anxiety, depressive disorders, and substance/alcohol abuse are more common complications [\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eA recent study by the Italian Transition in Diabetes, Epilepsy, and ADHD patients (TransiDEA) study group described the characteristics of young adults in the three years after turning 18. A Survey conducted in 2022 (phase 1) and interviews and questionnaires collected in 2023 (phase 2) described the transition pathways in terms of continuity of care, well-being indicators, and perceived experiences from the perspective of both young adults with ADHD and their clinicians. The main findings and open questions are reported in \u003cb\u003eBox 1\u003c/b\u003e. It was observed that non-referred patients presented several sentinel events, such as access to emergency rooms following car accidents, drunk driving episodes or fights, relational and attentional difficulties, impulsivity, anxiety, and unemployment [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e]. These issues could potentially affect 50% of young adults with ADHD turning 18 each year since almost half of them are lost by the healthcare system [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]. Yet, the survey conducted within the same study [\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e] revealed that while 74% of the Child and Adolescent Mental Health Services (CAMHS) followed transitioning patients in the previous year, only 43% of the Adult Mental Health Services (AMHS) received patients. Only a minority of the services (32%) had a transition protocol to structure the path, and even less planned a monitoring phase (12%). This means that many patients still get lost in the process. These results are in accordance with what is also reported in other nations [\u003cspan additionalcitationids=\"CR10\" citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eWhile intervening in some economic and administrative issues, such as the lack of resources, is less viable, work can be done on the organizational side. Providing clear and implementable guidelines with few resources can facilitate smooth transition processes. Some guidelines exist at an international level (e.g., the National Institute for Clinical Health and Excellence - NICE - Transition Guidelines and the Ready Steady Go program in the U.K., The Six Core Elements in the U.S.A.) [\u003cspan additionalcitationids=\"CR13\" citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e]; however, their application in practice is complex [\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e], and, even after adjustment, they have still not been adopted in many countries. The definition of shared recommendations is a particular priority in Italy, where the estimated ADHD prevalence in youth ranges from 1.1 to 3.1% [\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e]. The need for shared recommendations, guided as much as possible by scientific evidence and the needs arising from clinical practice and patients' experience, however, is still unmet.\u003c/p\u003e \u003cp\u003eThe present study (phase 3 of the TransiDEA project) aimed to define a consensus document to be adopted in Italian services. In particular, the goal was to provide a tool tailored to the practical needs and resources of the Italian services through an adaptation of the main international guidelines based on the results obtained during phase 1 and 2 of the TransiDEA project.\u003c/p\u003e \u003cp\u003eSeveral studies attempted a similar approach for youth with several healthcare needs. The core elements included early planning, individualized paths (e.g., flexible age cut-offs based on the patients' and families' needs), training in transitional care issues for clinicians, and ensuring follow-up and support after transition [\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e, \u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e]. What was often neglected was the point of view of the people directly involved in the process (i.e., patients, families, clinicians). In this study, we asked the stakeholders of the ADHD transition process to give feedback on possible or existing transition guidelines.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eA modified Delphi consensus study was designed and conducted between February and May 2024. This method formalizes the involvement of experts from a multidisciplinary background by asking them to express an informed opinion on a specific topic to reach a consensus on the core aspects. This approach is often used to form standards and guidelines (e.g., [\u003cspan additionalcitationids=\"CR20 CR21\" citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]). In the case of ADHD, very few studies employed this method, and did so mainly to detect outcomes of treatment and possible clinical guidelines for screening, diagnosis, and treatment [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e, \u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e], to design adequate neuropsychological assessment tools [\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e], and to investigate the psychoeducational needs of adults with ADHD [\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe goal of this consensus conference was to identify the main elements that, according to all those involved in the transition process, should be included in truly implementable shared recommendations. Leveraging direct experiences should lead to better management of the transition, and thus to the greater well-being of young adults and families, as well as to a decrease in loss of ADHD patients by the public health system. Twenty-seven figures divided into 5 groups (4 child psychiatrists, 6 psychiatrists, 5 psychologists, 7 members of scientific societies and associations or primary care physicians, 2 patients, and 3 parents) were identified and invited.\u003c/p\u003e \u003cp\u003e The first version of the document containing possible recommendations was drafted by analyzing the following main international guidelines:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eNICE \"Transition from children's to adults' services\" Quality Standard Recommendations (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.nice.org.uk/guidance/QS140\u003c/span\u003e\u003cspan address=\"https://www.nice.org.uk/guidance/QS140\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e) [\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e].\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eReady, Steady, Go (\u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.readysteadygo.net/rsg.html\u003c/span\u003e\u003cspan address=\"https://www.readysteadygo.net/rsg.html\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e) [\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e].\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eTHE SIX CORE ELEMENTS OF HEALTH CARE TRANSITION (Got Transition\u0026reg;) [\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e].\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eThe items to be included in the consensus were then further integrated with information gathered during the first two phases of the TransiDEA project [\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e, \u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e].\u003c/p\u003e \u003cp\u003eThe first draft comprised 26 statements that encompassed the following aspects: timeline of meetings and passage; space to inform youth and their families and answer their questions; inter-service communication; practical tools to facilitate information exchange during the transition; monitoring young adults' care paths after transition; methods of self-assessment of services to improve future transition pathways.\u003c/p\u003e \u003cp\u003eEach panel member was asked to respond to an online questionnaire containing \u003cem\u003e33 items\u003c/em\u003e (some of the \u003cem\u003e26 statements\u003c/em\u003e included multiple items) that were potentially part of transition recommendations. They were then asked to indicate how much each agreed (on a scale of 1\u0026thinsp;=\u0026thinsp;not at all agree to 5\u0026thinsp;=\u0026thinsp;very much agree) about the usefulness of each item in daily service practice.\u003c/p\u003e \u003cp\u003eSpaces were also provided for writing notes and comments, indicating that any observations would be valuable in the discussion phase. The full text of the first draft is available as \u003cb\u003eAppendix A\u003c/b\u003e.\u003c/p\u003e \u003cp\u003eOnce each round of compilations was completed, agreement was measured as the percentage of respondents who gave each item a score of 1 or 2 (disagree) or 4 or 5 (agree). A 75% agreement/disagreement limit was chosen a priori to represent positive or negative agreement, respectively [\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e]. Items that did not reach a significant agreement were modified according to the panelists' comments. Notes and comments could also be used to edit items in case of high agreement if they were helpful for better wording.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eTwo rounds were carried out before reaching a sufficient agreement. After the \u003cb\u003efirst round\u003c/b\u003e, the overall agreement reported was greater than 75% for 25 items and less than 75% for 8 items (see \u003cb\u003eAppendix B\u003c/b\u003e, Table\u0026nbsp;1). The agreement was also analyzed by comparing two groups: groups 1\u0026ndash;3, including the clinical stakeholders (child psychiatrists, psychiatrists, and psychologists), and groups 4\u0026ndash;5, including the other actors involved in the process (associations, scientific societies, children, and parents). For 17 items, agreement was high for both groups; for 13 items, agreement was high only for groups 4\u0026ndash;5; for 1 item, agreement was high only for groups 1\u0026ndash;3. For only 2 items (9 and 26b), the agreement was less than 75% for both groups.\u003c/p\u003e \u003cp\u003eOnly one statement was not changed. The other statements were:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eimproved based on useful comments provided (N\u0026thinsp;=\u0026thinsp;12);\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003emodified based on low ratings and comments (N\u0026thinsp;=\u0026thinsp;10);\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003edeleted and merged with others (N\u0026thinsp;=\u0026thinsp;3).\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e \u003cp\u003eThe first round's results were then presented to the panel, accompanied by suggested rephrasing for those 23 statements for which the consensus reached was low or valuable suggestions for implementation were given in the comments. Since the initial items referred to practical tools, a copy of those tools was also provided.\u003c/p\u003e \u003cp\u003eEach panel member was then asked to view the changes and indicate agreement or change suggestions. Twenty-six responses were collected (it was not possible to obtain a response from only one of the patients).\u003c/p\u003e \u003cp\u003eAfter the \u003cb\u003esecond round\u003c/b\u003e, a high agreement (\u0026gt;\u0026thinsp;80%) was observed for all groups for all items (see \u003cb\u003eAppendix B\u003c/b\u003e, Table\u0026nbsp;2). 8 items were not further modified in the second round. Additional small changes made to the remaining items were:\u003c/p\u003e \u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eimproved based on useful comments (N\u0026thinsp;=\u0026thinsp;14);\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003edeleted and merged with the previous one (N\u0026thinsp;=\u0026thinsp;1).\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e\n\u003ch3\u003eFinal document\u003c/h3\u003e\n\u003cp\u003eThe final document contains 22 statements, divided into four sections: planning (14 items); passage (4 items); monitoring (1 item); services (3 items).\u003c/p\u003e \u003cp\u003eThe final document is available in \u003cb\u003eBox 2\u003c/b\u003e below. Moreover, the original Shared Final Recommendations and all the tools designed are available in Italian on the website \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://transitioncare.marionegri.it/pubblicazioni/\u003c/span\u003e\u003cspan address=\"https://transitioncare.marionegri.it/pubblicazioni/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e.\u003c/p\u003e"},{"header":"Discussion and Conclusions","content":"\u003cp\u003eThe final document resulted from the three phases of the TransiDEA project. The first phase provided important information on organizational and inter-service communication issues. The final document itself (with most of the recommendations referring to the preparation phase) emphasizes the fundamental importance of effective planning for successful transition processes.\u003c/p\u003e \u003cp\u003eThe panel's first point discussed was the age at which to begin transition preparation. The starting point of 16 years was chosen since the pathways analyzed during phase 2 showed that transition preparation rarely starts before age 17, yet patients themselves stated that they would need more time (at least 6 months more). From round 1, there was 89% agreement, indicating that earlier transition planning would be desirable for everyone.\u003c/p\u003e \u003cp\u003ePersonalized transition planning was also deemed essential, with more discussion about which elements to use in personalizing the transition. The need, foreseen by the Italian law, for each service to keep in mind the patient's change in legal status upon reaching the age of 18 in the certifications and documentation it collects was also mentioned.\u003c/p\u003e \u003cp\u003eThe most debated point was how to distribute the transition meetings over time and who to include in each one of those. Regarding the initial proposal to hold meetings every 6 months (about four meetings from age 16 onwards), some commented that it would be too many. In contrast, others suggested keeping it as a minimum number but, where possible, organizing even more meetings. The compromise on which an agreement was reached was that it would be optimal to schedule at least three meetings before the actual transition. It also emerged as crucial that all those involved in the transition process should be involved in these meetings, including families (although not everyone necessarily needs to be simultaneously present at all meetings). At least two meetings should be held only by the two services, the CAMHS and the identified AMHS.\u003c/p\u003e \u003cp\u003e Another item for which there was a low agreement was the one that defined the need to complete the transition by the time the child reaches the age of 18, while allowing for cases in which it is deemed necessary to postpone the transfer. Opinions were mixed on this part, with some advocating the need not to delay the transfer and some suggesting that the transition should also be planned to consider specific needs related to the stage of life, such as attendance and completion of school. Despite this, regulatory constraints do not allow for too much flexibility in this regard, so the final recommendations specified: \"Upon reaching the age of 18, the transition should not be delayed except in exceptional cases and for a short period based on the assessment of the clinical picture, life stage needs (e.g., school completion), and the level of readiness for transition by both the young person and the services.\"\u003c/p\u003e \u003cp\u003eThe observations of the group of experts involved in this study once again confirmed what emerged from the entire TransiDEA project: organizational and resource problems currently hinder the transition process. For example, the figure of the \"named worker\" (as defined in the NICE Recommendations), i.e., the worker in charge of coordinating assistance during the transition in all its phases, was immediately recognized as crucial. In the comments, however, this figure was referred to as an \"ideal situation\" that is \"not very feasible.\"\u003c/p\u003e \u003cp\u003eSimilarly, the use of tools (inter-service care agreement, transition readiness questionnaires, registry made available to service providers to monitor patient pathways) is described as \"desirable\", but accompanied by the observation that no such tools appear to be available to date and that possible organizational shortcomings (related to time, staffing, etc.) could hinder their use.\u003c/p\u003e \u003cp\u003eNonetheless, the final recommendations include such tools, with the intent for them to be available should they be needed. In addition, an attempt was made to limit them to quick questionnaires that can be filled out, used as an outline guide during the meetings, or provided to the young adults as prompts for reflection. The hope is that these tools will contribute to the perception of a more structured and guided path.\u003c/p\u003e \u003cp\u003eNext, regarding monitoring and follow-up meetings, the panel members' comments led to the definition that the AMHS should notify the CAMHS of any unsuccessful referral. This should be done for two reasons: first, to provide a way for CAMHS to improve their transition processes, and second, to provide the young person with an alternative care pathway where there is a need. Similarly, holding a monitoring meeting 6 months after the transition would be desirable, gathering feedback from youth and clinicians. Each service is also encouraged to periodically evaluate the outcome of individual transitions and the overall service to improve their transition processes. This suggestion involves taking into consideration both the youths\u0026rsquo; views on the matter and service-related data (e.g., the number of youth who continue to be in the care of AMHS 1 year after transfer vs. the number of expected patients; the number of youth who do not attend the first meeting vs. the number of expected patients).\u003c/p\u003e \u003cp\u003eFinally, especially from phase 1 of the project, a need for more training on the transition topic emerged for CAMHS and AMHS clinicians. Therefore, a recommendation was included in the final document that each service should train its practitioners on the appropriate management of the ADHD patient, centering on all essential aspects: therapy, clinical, epidemiology, treatments, interactions with other services, and management of family members.\u003c/p\u003e \u003cp\u003eThe present study can potentially encourage the territorial realities of different nations to do the same. Moreover, a single tool was made available to all Italian services for the first time, trying to overcome the current heterogeneous and poorly regulated management of transition processes. The strength of the recommendations is that the indications expressed will be applied in practice. A specific survey aimed to check their outcome in the future will be planned. The study was conducted under the aegis of the Italian Ministry of Health; it will therefore also be an institutional responsibility that the recommendations are known and that adequate resources are provided for them to be applied throughout the national territory.\u003c/p\u003e \u003cp\u003eIn the future, a similar methodology may also be extended to the transition from pediatric to adult care in the case of other neurodevelopmental disorders or medical conditions.\u003c/p\u003e \u003cp\u003eIn conclusion, by putting together the multiple perspectives brought by the multidisciplinary panel (young adults with ADHD, clinicians, family members, and association members) and the observations gathered through research methods (surveys, interviews, questionnaires), a document that offers a chance to organize future transition pathways in a thoughtful and participatory manner was defined. The practical tools provided offer a possibility for information sharing in the hope of empowering young adults to have all their questions answered and clinicians to monitor pathways and overcome organizational burdens.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eAcknowledgments:\u003c/strong\u003e We would like to thank the TransiDEA Group members: \u003cstrong\u003e\u003cem\u003eTransidea ADHD\u003c/em\u003e\u003c/strong\u003e \u003cstrong\u003e\u003cem\u003ePanel Group\u003c/em\u003e\u003c/strong\u003e: Matteo A. Chiappedi (U.O.S. Neuropsichiatria Infantile di Vigevano, ASST Pavia); Maddalena Duca (UOC Neuropsichiatria Infantile Ospedale di Macerata); Simone Pisano (Dipartimento di Scienze Mediche Traslazionali Universit\u0026agrave; Federico II di Napoli); Valeria Tessarollo (Neurospichiatria Infantile, ASST Santi Paolo e Carlo, Milano); Corrado Barbui (Dipartimento di Neuroscienze, Biomedicina e Movimento, Universit\u0026agrave; di Verona); Angelo Bertani (Servizio Diagnosi e Cura, Reparto Psichiatria, ASST Santi Paolo e Carlo, Milano); Felice Iasevoli (Azienda Ospedaliera Universitaria Federico II, Napoli); Chiara Resentera (Centro Psicodiagnostico Italiano, Milano); Michele Servasi (Ospedali Riuniti delle Marche \u0026ndash; Ancona); Ilaria Costantino (Neuropsichiatria Infantile, ASST Santi Paolo e Carlo, Milano); Claudia Giordani (UOC Neuropsichiatria Infantile Ospedale di Macerata); Simona Travellini (Universit\u0026agrave; degli Studi di Urbino \u0026quot;Carlo Bo\u0026quot;); Olimpia Riccioni (Universit\u0026agrave; degli Studi di Napoli Federico II); Silvia Romeo (Centro Psicodiagnostico Italiano, Milano); Marina Bianchi (ATS Citt\u0026agrave; Metropolitana, Milano); Elisa Colombi (Societ\u0026agrave; Italiana di Neuropsichiatria dell\u0026apos;Infanzia e dell\u0026apos;Adolescenza \u0026ndash; SINPIA, \u0026nbsp;Azienda Sanitaria Locale CN2 Alba \u0026ndash; Bra, Cuneo); Andreas Conca (Azienda Sanitaria dell\u0026apos;Alto Adige, Bolzano; Societ\u0026agrave; Italiana di Psichiatria - SIP); Marco Cecchi (Associazione Nazionale Infermieri Neuroscienze - ANIN); Carmen Gigliotti (Abilitiamo Autismo Onlus, Cant\u0026ugrave;); Astrid Gollner (Associazione Italiana Famiglie ADHD - AIFA APS); Cristina Lemme (ADHD Italia); Federica Zanetto (ATS Brianza ; Associazione Culturale Pediatri - ACP); Chiara Gori; Elena Rota; M. D. R.; S.G.; M. M.\u003cstrong\u003e\u003cem\u003e\u0026nbsp;Coordinating and Managing Group\u003c/em\u003e\u003c/strong\u003e\u003cem\u003e:\u003c/em\u003e Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Milan, Italy: Maurizio Bonati, Antonio Clavenna, Francesca Scarpellini, Elisa Roberti, Rita Campi, Massimo Cartabia, Michele Giardino, Michele Zanetti, Maria Grazia Calati; \u003cstrong\u003e\u003cem\u003eDiabetes (D):\u003c/em\u003e\u003c/strong\u003e AUSL della Romagna, Ravenna, Italy: Vanna Graziani, Federico Marchetti, Tosca Suprani; Santa Maria delle Croci Hospital, Ravenna, Italy: Paolo Di Bartolo; \u003cstrong\u003e\u003cem\u003eEpilepsy (E):\u003c/em\u003e\u003c/strong\u003eASST Santi Paolo e Carlo \u0026ndash; Ospedale San Paolo, Milano: Maria Paola Canevini, Ilaria Vigan\u0026ograve;; \u003cstrong\u003e\u003cem\u003eADHD (A):\u003c/em\u003e\u003c/strong\u003e ASST Santi Paolo e Carlo \u0026ndash; Ospedale San Paolo, Milano: Ilaria Costantino, Valeria Tessarollo;\u0026nbsp;University of Milan, Milan, Italy:\u0026nbsp;Eleonora Basso.\u0026nbsp;The authors would also like to acknowledge Chiara Pandolfini for language editing, and Maria Grazia Calati for the secretarial management.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor contributions:\u0026nbsp;\u003c/strong\u003eMaurizio Bonati conceptualized the study with the help of the TransiDEA Group; Maurizio Bonati, Antonio Clavenna, Elisa Roberti and Francesca Scarpellini curated methodology; Rita Campi, Michele Giardino, and Michele Zanetti curated resources; Elisa Roberti and Eleonora Basso contributed to the collection of information through drafting the items and coordinating the Delphi panel; Elisa Roberti and Antonio Clavenna carried out data analysis; Elisa Roberti wrote the original manuscript draft; Maurizio Bonati, Francesca Scarpellini and Antonio Clavenna reviewed and edited the manuscript. Maurizio Bonati supervised the project. All authors have read and agreed to publish the current version of the manuscript.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eStatements and Declarations\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting Interests:\u0026nbsp;\u003c/strong\u003eThe authors have no relevant financial or non-financial interests to disclose.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003eThis research is part of the project \u0026quot;Transition care between adolescent and adult services for young people with chronic health needs in Italy\u0026quot;, funded by the Italian Ministry of Health (RF-2019-12371228).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eEthics approval\u003c/strong\u003e: The study is part of a wider project (\u0026quot;\u003cem\u003eTransition care between adolescent and adult services for young people with chronic health needs in Italy\u0026quot;,\u003c/em\u003e \u003cem\u003eRF-2019-12371228\u003c/em\u003e) that was approved by the IRCCS \u0026quot;Carlo Besta\u0026quot; Ethics Committee (ethics committee of reference for the Mario Negri IRCCS Institute) (8 September 2021, protocol n. 87).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eData availability statement:\u0026nbsp;\u003c/strong\u003eThe data presented in this study are available on the Zenodo platform (https://doi.org/10.5281/zenodo.11545847). The materials produced (Shared recommendations and appendices) are available online (in Italian) on the following website: https://transitioncare.marionegri.it/pubblicazioni/.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eCormier E (2008) Attention Deficit/Hyperactivity Disorder: A Review and Update. J Pediatr Nurs 23:345\u0026ndash;357\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFaraone SV, Banaschewski T, Coghill D, Zheng Y, Biederman J, Bellgrove MA et al (2021) The World Federation of ADHD International Consensus Statement: 208 Evidence-based conclusions about the disorder. Neurosci Biobehavioral Reviews 128:789\u0026ndash;818\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSalari N, Ghasemi H, Abdoli N, Rahmani A, Shiri MH, Hashemian AH et al (2023) The global prevalence of ADHD in children and adolescents: a systematic review and meta-analysis. Ital J Pediatr 49:48\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFogler JM, Burke D, Lynch J, Barbaresi WJ, Chan E (2017) Topical Review: Transitional Services for Teens and Young Adults With Attention-Deficit Hyperactivity Disorder: A Process Map and Proposed Model to Overcoming Barriers to Care. J Pediatr Psychol 42:1108\u0026ndash;1113\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eDi Lorenzo R, Balducci J, Poppi C, Arcolin E, Cutino A, Ferri P et al (2021) Children and adolescents with ADHD followed up to adulthood: a systematic review of long-term outcomes. Acta Neuropsychiatr 33:283\u0026ndash;298\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRoberti E, Clavenna A, Basso E, Bravaccio C, Riccio MP, Pincherle M et al (2024) Challenges in transitioning from adolescent to Adult Mental Health Services for young adults with ADHD in Italy: an observational study. 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Expert Rev Neurother 14:799\u0026ndash;812\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePrice A, Janssens A, Woodley AL, Allwood M, Ford T, Review (2019) Experiences of healthcare transitions for young people with attention deficit hyperactivity disorder: a systematic review of qualitative research. Child Adolesc Ment Health 24:113\u0026ndash;122\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNational Institute for Health \u0026amp; Care Excellence. NICE Clinical Guideline [NG43] Transition from children\u0026rsquo;s to adults\u0026rsquo; services for young people using health or social care services [Internet] (2016) Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e\u003c/span\u003e\u003cspan address=\"http://www.nice.org.uk/guidance/ng43\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWhite PH, Cooley WC, Transitions Clinical Report Authoring Group, American Academy Of Pediatrics, American Academy Of Family Physicians, American College Of Physicians (2018) Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home. Pediatrics 142:e20182587\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMeyers MJ, Irwin CE (2023) Health Care Transitions for Adolescents. Pediatrics 151:e2022057267L\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eEke H, Janssens A, Ford T, Review (2019) Transition from children\u0026rsquo;s to adult services: a review of guidelines and protocols for young people with attention deficit hyperactivity disorder in England. Child Adolesc Ment Health 24:123\u0026ndash;132\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eReale L, Bonati M (2018) ADHD prevalence estimates in Italian children and adolescents: a methodological issue. Ital J Pediatr 44:108\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eQuintero J, Rodr\u0026iacute;guez-Quiroga A, \u0026Aacute;lvarez-Mon M\u0026Aacute;, Mora F, Rostain AL (2022) Addressing the Treatment and Service Needs of Young Adults with Attention Deficit Hyperactivity Disorder. Child Adolesc Psychiatr Clin N Am 31:531\u0026ndash;551\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eToulany A, Willem Gorter J, Harrison M (2022) A call for action: Recommendations to improve transition to adult care for youth with complex health care needs. Paediatr Child Health 27:297\u0026ndash;302\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eBurton BK, Hermida \u0026Aacute;, B\u0026eacute;langer-Quintana A, Bell H, Bjoraker KJ, Christ SE et al (2022) Management of early treated adolescents and young adults with phenylketonuria: Development of international consensus recommendations using a modified Delphi approach. Mol Genet Metab 137:114\u0026ndash;126\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003ePringsheim T, Batla A, Shalash A, Sahu JK, Cosentino C, Ebrahimi-Fakhari D et al (2023) Transitional Care for Young People with Movement Disorders: Consensus‐Based Recommendations from the MDS Task Force on Pediatrics. Mov Disord Clin Pract 10:748\u0026ndash;755\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRobinson J, Thorn P, McKay S, Hemming L, Battersby-Coulter R, Cooper C et al (2023) #chatsafe 2.0. updated guidelines to support young people to communicate safely online about self-harm and suicide: A Delphi expert consensus study. Ciobanu LG, editor. PLoS ONE. ;18:e0289494\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eVita A, Barlati S, Bellomo A, Poli PF, Masi G, Nobili L et al (2022) Patterns of Care for Adolescent With Schizophrenia: A Delphi-Based Consensus Study. Front Psychiatry 13:844098\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eNagra A, McGinnity PM, Davis N, Salmon AP (2015) Implementing transition: Ready Steady Go. Arch Dis Child Educ Pract Ed 100:313\u0026ndash;320\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003e\u0026Ouml;zgen H, Spijkerman R, Noack M, Holtmann M, Schellekens ASA, van de Glind G et al (2020) International Consensus Statement for the Screening, Diagnosis, and Treatment of Adolescents with Concurrent Attention-Deficit/Hyperactivity Disorder and Substance Use Disorder. Eur Addict Res 26:223\u0026ndash;232\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eFuermaier ABM, Fricke JA, de Vries SM, Tucha L, Tucha O (2019) Neuropsychological assessment of adults with ADHD: A Delphi consensus study. Appl Neuropsychology: Adult 26:340\u0026ndash;354\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eSeery C, Wrigley M, O\u0026rsquo;Riordan F, Kilbride K, Bramham J (2022) What adults with ADHD want to know: A Delphi consensus study on the psychoeducational needs of experts by experience. Health Expect 25:2593\u0026ndash;2602\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eWillis ER, McDonagh JE (2018) Transition from children\u0026rsquo;s to adults\u0026rsquo; services for young people using health or social care services (NICE Guideline NG43). Arch Dis Child Educ Pract Ed 103:253\u0026ndash;256\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMcManus M, White P, Pirtle R, Hancock C, Ablan M, Corona-Parra R (2015) Incorporating the Six Core Elements of Health Care Transition Into a Medicaid Managed Care Plan: Lessons Learned From a Pilot Project. J Pediatr Nurs 30:700\u0026ndash;713\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRoberti E, Scarpellini F, Campi R, Giardino M, Clavenna A, Bonati M Transitioning to Adult Mental Health Services for young people with ADHD: an Italian-based Survey on practices for Pediatric and Adult Services [Internet]. In Review; 2023 Jan. Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.researchsquare.com/article/rs-2470407/v1\u003c/span\u003e\u003cspan address=\"https://www.researchsquare.com/article/rs-2470407/v1\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eRoberti E, Scarpellini F, Campi R, Giardino M, Clavenna A, Bonati M (2023) Apr Protocols for transitioning to adult mental health services for adolescents with ADHD [Internet]. Public Health and Healthcare; Available from: \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.preprints.org/manuscript/202304.0055/v1\u003c/span\u003e\u003cspan address=\"https://www.preprints.org/manuscript/202304.0055/v1\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"},{"header":"Box","content":"\u003cp\u003eBox 1 and 2 are available in the Supplementary Files section.\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"european-child-and-adolescent-psychiatry","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ecap","sideBox":"Learn more about [European Child \u0026 Adolescent Psychiatry](http://link.springer.com/journal/787)","snPcode":"787","submissionUrl":"https://submission.nature.com/new-submission/787/3","title":"European Child \u0026 Adolescent Psychiatry","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Transition care, ADHD, Delphi consensus, Shared recommendations","lastPublishedDoi":"10.21203/rs.3.rs-5677237/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-5677237/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eThis study aimed to develop consensus-based recommendations for improving the transition of care for young adults with Attention-deficit/hyperactivity disorder (ADHD) from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) in Italy. A modified Delphi consensus method was employed, involving 27 stakeholders, including child psychiatrists, psychiatrists, psychologists, primary care physicians, young adults with ADHD, and parents. Recommendations were drafted by combining data from prior phases of the Transition in Diabetes, Epilepsy, and ADHD patients (TransiDEA) project and international guidelines (e.g., NICE, Ready Steady Go). Stakeholders evaluated 33 proposed recommendations across two rounds, rating their relevance and feasibility. Consensus was defined as \u0026ge;\u0026thinsp;75% agreement per item. Consensus was achieved on 22 recommendations organized into four categories: planning (14 items), passage (4 items), monitoring (1 item), and services (3 items). Key recommendations included starting transition planning at age 16, involving families and interdepartmental teams, implementing practical tools for information exchange, and monitoring patient outcomes post-transition. Training for clinicians and service self-assessment were emphasized to address systemic barriers. The final shared recommendations integrate multiple perspectives and international best practices and provide a structured, adaptable framework for improving ADHD care transitions in Italy. Future efforts should evaluate their implementation and expand the methodology to other neurodevelopmental conditions.\u003c/p\u003e","manuscriptTitle":"Delphi consensus on the transition from pediatric to adult care in Italian ADHD youth","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-04-29 17:53:20","doi":"10.21203/rs.3.rs-5677237/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-04-21T20:28:08+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-03-29T11:23:29+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-03-01T16:43:41+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"252692865703422947998104986145532513553","date":"2025-02-27T08:55:03+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"318278949302628718679261596182816066308","date":"2025-02-21T00:45:31+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"272451079707698725421178064256506195287","date":"2025-02-20T19:35:01+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-02-20T19:32:38+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-12-20T07:13:43+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-12-20T07:11:06+00:00","index":"","fulltext":""},{"type":"submitted","content":"European Child \u0026 Adolescent Psychiatry","date":"2024-12-19T13:34:18+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"european-child-and-adolescent-psychiatry","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ecap","sideBox":"Learn more about [European Child \u0026 Adolescent Psychiatry](http://link.springer.com/journal/787)","snPcode":"787","submissionUrl":"https://submission.nature.com/new-submission/787/3","title":"European Child \u0026 Adolescent Psychiatry","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"em","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"3995621a-afbc-4d03-b22d-9a77334da98f","owner":[],"postedDate":"April 29th, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-07-28T16:05:29+00:00","versionOfRecord":{"articleIdentity":"rs-5677237","link":"https://doi.org/10.1007/s00787-025-02810-w","journal":{"identity":"european-child-and-adolescent-psychiatry","isVorOnly":false,"title":"European Child \u0026 Adolescent Psychiatry"},"publishedOn":"2025-07-23 15:57:26","publishedOnDateReadable":"July 23rd, 2025"},"versionCreatedAt":"2025-04-29 17:53:20","video":"","vorDoi":"10.1007/s00787-025-02810-w","vorDoiUrl":"https://doi.org/10.1007/s00787-025-02810-w","workflowStages":[]},"version":"v1","identity":"rs-5677237","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-5677237","identity":"rs-5677237","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}