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Health services research
Protocol
Mapping the landscape and evidence of cross-sectoral collaboration models targeting individuals referred for assessment of attention-deficit hyperactivity disorder or autism spectrum disorder: protocol for a scoping review
  1. Rikke Kirstine Kristensen1,2,
  2. Pernille Tanggaard Andersen3,
  3. Niels Bilenberg2,4,
  4. Emilie Dalsgaard Milling4,
  5. Julie Dalgaard Guldager5,6
  1. 1 Research unit of Child and Adolescent Psychiatry, Department of Clinical Research, University of Southern Denmark, SDU, Odense, Denmark
  2. 2 Research unit of Child and Adolescent Psychiatry, Mental Health Services in the Region of Southern Denmark, Odense, Denmark
  3. 3 Department of Health Promotion Research, University of Southern Denmark Institute for Public Health, Esbjerg, Denmark
  4. 4 Research unit of Child and Adolescent Psychiatry, Department of Clinical Research, University of Southern Denmark, Odense, Denmark
  5. 5 Research Department, University College South Denmark, Esbjerg, Denmark
  6. 6 Department of Public Health, University of Southern Denmark, Esbjerg, Denmark
  1. Correspondence to Rikke Kirstine Kristensen; rikke.kristensen{at}rsyd.dk

Abstract

Introduction Neurodevelopmental disorders, notably attention-deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD), present substantial challenges in mental health. Individuals referred for assessment in a psychiatric unit experience complex needs. This implies that their needs necessitate coordination across multiple sectors. Cross-sectoral collaboration models have emerged as essential strategies for addressing the complexities of these disorders. However, evidence of their existence, implementation and success remains limited. This protocol aims to outline a scoping review where we will explore existing collaboration models, evaluate their implementation and gain an understanding of how cross-sectoral collaboration models can be developed to ultimately benefit individuals referred for assessment of ADHD or ASD.

Methods and analysis This proposed scoping review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines. A comprehensive search will be conducted across PubMed, CINAHL, Embase, PsycINFO and Google Scholar, as well as grey literature sources, between 1 December 2024 and 1 January 2025. Inclusion criteria will encompass studies focusing on cross-sectoral collaboration for individuals referred for assessment of ADHD or ASD, published in English, Danish, Norwegian or Swedish. The search will use a three-block search string, with iterative refinement guided by familiarity with the evidence base. Data extraction will involve study characteristics and implementation details, using the Consolidated Framework for Implementation Research in combination with Proctor et al’s implementation outcomes framework. Results will be synthesised into descriptive tables, providing a comprehensive mapping of existing models and emphasising implementation feasibility.

Ethics and dissemination Ethical approval is not required for this protocol since it involves the review of existing literature without the involvement of human participants or personal data. Findings will be disseminated at national and international conferences and will be integrated into future efforts to develop cross-sectoral collaboration models in Denmark.

  • Delivery of Health Care, Integrated
  • MENTAL HEALTH
  • Implementation Science
  • PSYCHIATRY
  • Attention Deficit Disorder with Hyperactivity
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https://doi-org.ezproxy.u-pec.fr/10.1136/bmjopen-2024-088850

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    STRENGTHS AND LIMITATIONS OF THIS STUDY

    • A comprehensive and thorough search ensures a broad identification of relevant studies.

    • The use of Covidence in data extraction ensures rigour, and adherence to Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines enhances reproducibility.

    • The combination of Proctor et al and the Consolidated Framework for Implementation Research allows for an in-depth and detailed analysis.

    • Reliance on published literature may skew results towards positive outcomes.

    • Assessing study quality, especially in grey literature, may be challenging.

    Introduction

    Neurodevelopmental disorders (NDDs), constituting over one-third of all mental disorders, are a prominent category within mental health concerns.1 2 Attention-deficit hyperactivity disorder (ADHD) and autism spectrum disorder (ASD), though recognised as childhood-onset disorders, have experienced a general increase in diagnoses, including a rise in delayed diagnoses in adulthood. In addition, there is a growing focus on identifying these disorders in girls who have historically been underdiagnosed.3–5 Within the landscape of NDDs, particularly ADHD and ASD, the exploration of cross-sectoral collaboration models has emerged as a crucial avenue for navigating the challenges experienced by affected individuals.6–8

    Cross-sectoral collaboration models, defined as collaborations that facilitate diverse stakeholders from different sectors working together to achieve a common goal, have become increasingly important due to the intricate nature of these disorders.7 9 NDDs present unique hurdles impacting individuals’ trajectories and imposing significant costs on both the individual, their families and society at large.10–13 Studies rarely examine the practical feasibility of implementing these models, overlooking critical challenges like resource allocation and stakeholder engagement that can significantly influence success.14 15 This underscores the need for more robust research informing the future development of effective, context-sensitive cross-sectoral collaboration models.16 17

    Classification, severity spectrum and clinical overlap between ADHD and ASD

    The evolving understanding of ADHD and ASD emphasises a spectrum, wherein individuals can range from seamlessly navigating mainstream education and employment to facing severe disabilities requiring continuous support.18 According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) and International Classification of Diseases, 11th Revision (ICD-11), ADHD is classified into three subtypes based on specific symptoms: predominantly inattentive, predominantly hyperactive-impulsive and combined presentation.18 19 Similarly, ASD is now categorised as a single condition ranging in severity from requiring support to requiring very substantial support, reflecting the diverse presentation of social communication difficulties and restrictive, repetitive behaviours.18–20

    Clinically, there is increasing recognition of the overlap between ADHD and ASD in cognitive, emotional and social challenges.21 Numerous studies have shown that a significant number of children diagnosed with ADHD exhibit traits or behaviours consistent with ASD, and vice versa, leading to more dual diagnosis that complicate care and treatment pathways. Nearly 30–50% of individuals with ASD also meet the criteria for ADHD, indicating frequent co-occurrence and overlapping symptomatology.21–24

    Moreover, there is an overlap among professionals involved in the assessment and care of individuals with suspected NDDs, necessitating increased coordination across health, education and social services.25 Internationally, many healthcare systems treat both ADHD and ASD under broader neurodevelopmental service frameworks.26

    Personal consequences of ADHD and ASD on individuals and families

    ADHD and ASD can significantly impact individuals by causing challenges in social interactions, communication and daily functioning, leading to feelings of isolation and frustration.27 Families often experience emotional stress and strained relationships due to increased caregiving responsibilities and the need to adapt to unique needs.28 29 These conditions demand significant time and energy, affecting overall family dynamics.30 Misunderstandings and lack of awareness from others may result in social stigma, impacting both the individual and their loved ones.31 32 These personal consequences highlight the importance of support and understanding to improve the quality of life for individuals and their families.32–34

    Socioeconomic challenges of ADHD and ASD and the importance of early cross-sectoral intervention

    Individuals with ADHD or ASD often face difficulties in maintaining employment, completing education and forming stable relationships.35 36 Many struggle to complete even basic schooling, which limits their opportunities for stable employment and long-term economic independence. This incomplete educational trajectory is particularly problematic in Nordic welfare states, where education is key to labour market participation and long-term societal contribution.37–40

    Families of individuals with ADHD and ASD experience increased stress and the need for ongoing care, exacerbating the economic impact on society.12 41 The economic burden of ADHD and ASD extends beyond healthcare costs, affecting social services, education systems and, more broadly, the national economy.10 40 42

    This long-term financial strain underscores the necessity of early, coordinated interventions to alleviate both individual and societal costs. Research suggests that early and continuous intervention through cross-sectoral collaboration can effectively mitigate these long-term burdens.43 44

    Importantly, cross-sectoral collaboration models should not only focus on individuals with formal diagnoses but also on those with sub-threshold diagnoses. Many children and adolescents who initially present with symptoms that do not fully meet the diagnostic criteria for ADHD or ASD eventually go on to receive a diagnosis later.24 25 Therefore, identifying cross-sectoral collaboration models that also support individuals at the threshold stage is crucial. These models can play a key role in early intervention, which is often vital for improving long-term outcomes.7 45

    Rationale for investigating context-specific cross-sectoral collaboration models

    Despite the imperative to address NDDs, a noticeable evidence gap exists concerning the efficacy and effectiveness of cross-sectoral collaboration models tailored to this target group, including ADHD and ASD.14 15 46–49

    We focus on the implementation of context-specific collaboration models; models designed to meet the unique needs of specific environments, communities or organisational structures. These models take into account factors such as the population served, available services, socio-economic conditions and local policies.8 50 By adapting to these variables, context-specific models ensure that collaboration between sectors, such as health in combination with, eg, education and social services, is not only theoretically sound but also practically relevant and effective.51 52

    By highlighting the critical importance of early intervention,15 our scoping review specifically investigates cross-sectoral collaboration models initiated at the outset of the assessment process for neurodevelopmental disorders. By examining collaboration models from the point of referral, we seek to capture insights into how collaboration functions from the beginning of the assessment process, not just after a confirmed diagnosis.

    The objective of this scoping review protocol is to present a study that systematically maps existing cross-sectoral collaboration models initiated at the outset of assessment for ADHD and ASD, with the aim of evaluating their implementation and identifying contextual factors that ultimately affect implementation success.

    Protocol design

    The framework for this review protocol is inspired by the Joanna Briggs Institute Manual for Evidence Synthesis, 2024 edition,53 which builds on scoping review frameworks developed by Levac et al 54 and Arksey and O’Malley.55

    Inclusion and exclusion criteria

    To accomplish the objectives of this study, we will include all studies focusing on the development, implementation, evaluation and/or testing of cross-sectoral models of collaboration designed for individuals referred for assessment of a neurodevelopmental disorder, specifically ASD and/or ADHD.

    Participants

    Participants in the primary studies include children, adolescents and adults who have been referred to psychiatric services for assessment of attention-deficit hyperactivity disorder and/or autism spectrum disorder. Inclusion is not contingent on a formal diagnosis; participants may be at any stage of the assessment process for ADHD or ASD. We will not exclude participants in primary studies based on the presence of comorbid conditions; participants with additional diagnoses are eligible for inclusion. However, it is essential that ADHD and/or ASD are the primary focus of the study, serving as the main observed conditions under investigation. Studies where ADHD and/or ASD are not the primary conditions of interest will be excluded. This approach ensures a concentrated examination of collaboration models pertinent to the target population at the point of entry into psychiatric assessment for ADHD and/or ASD.

    Concept and context

    Study objectives

    While many studies discuss collaboration in broad or theoretical terms, few provide clear, systematic reporting on the actual implementation and structure of cross-sectoral collaboration models.56 This gap leaves us with a limited understanding of how collaboration functions in practice, especially across different healthcare systems and organisational structures internationally.57 Recognising this, our study seeks to explore and map the existing landscape of cross-sectoral collaboration models tailored for individuals undergoing assessment for ADHD and/or ASD.

    The primary objectives of our scoping review are to:

    1. Systematically identify and map all found cross-sectoral collaboration interventions targeting individuals referred for assessment for ADHD and/or ASD in mental health services.

    2. Provide a detailed overview of the identified studies, focusing on implementation factors and levels, including a frequency count of Proctor et al’s implementation outcomes such as feasibility, dose delivered and other relevant metrics.46

    3. Conduct an in-depth descriptive analysis of the findings using the Consolidated Framework for Implementation Research (CFIR), encompassing relevant domains and constructs to understand the factors influencing implementation success.58

    In this study, we define ‘cross-sectoral’ as involving collaboration between at least two sectors, including the secondary sector, healthcare (psychiatry), and the primary sector, which can include schools, municipalities, general practitioners or municipal psychiatric services.

    To comprehensively understand the implementation and effectiveness of cross-sectoral collaboration models, it is essential to consider both the contextual factors that shape their execution and the specific phenomena of interest, such as the role of psychiatry referrals in initiating collaboration, ensuring a nuanced analysis of how these models function in diverse settings and stages of care.

    Implementation factors and levels

    We are interested in how these collaboration models are implemented in practice, focusing on factors such as feasibility, fidelity, adoption and sustainability.46 This involves examining the structures, processes, and resources required to execute these models effectively.

    Contextual factors influencing implementation

    The review will consider how different contexts, such as healthcare system structures, cultural settings, policy environments and resource availability, affect the implementation and effectiveness of cross-sectoral collaboration models. Understanding these factors will help identify adaptable strategies applicable across diverse settings.58

    Phenomena of interest

    Specifically, we will explore collaboration models that involve a referral to child and adolescent psychiatry due to suspected ADHD or ASD. This focus captures how collaboration functions from the very beginning of the assessment process, not just after a confirmed diagnosis. Therefore, models that focus solely on collaboration within the primary sector, such as between schools and municipalities, are not within the scope of this review. There must be a referral to psychiatry, regardless of whether a diagnosis has been made.

    Outcomes

    While our primary focus is on mapping and understanding the implementation of these collaboration models, we acknowledge that various outcomes may be reported in the studies we review. We are open to identifying and describing any such outcomes; whether related to the effectiveness of the models, service delivery improvements, or other relevant impacts, we will specify these outcomes after analysing the empirical data collected during the review.

    Types of evidence

    We include a broad range of primary studies to comprehensively capture existing research on cross-sectoral collaboration models initiated at the outset of assessment for ADHD and ASD. We will consider quantitative studies such as randomised controlled trials, quasi-experimental studies, cohort studies, case–control studies, cross-sectional studies and case reports that provide empirical data on the effectiveness and implementation of collaboration models.

    Qualitative studies will also be included, encompassing interviews, focus groups, observational studies and document analyses that explore the experiences, perceptions and contextual factors influencing the implementation of these models. Mixed-methods studies that combine quantitative and qualitative approaches will be in scope to gain a comprehensive understanding of both measurable outcomes and contextual insights.

    We will include implementation studies like process evaluations and feasibility studies that examine how collaboration models are put into practice, identifying facilitators and barriers to successful implementation. Programme evaluations, policy analyses and case studies that provide detailed examinations of specific collaboration models or interventions will also be eligible for inclusion. Details are provided in table 1.

    View this table:
    Table 1

    Inclusion and exclusion criteria

    Methods

    Search strategy

    We have developed our search strategy based on a systematic approach, in consultation with a senior librarian specialist. Our initial database selections will include PubMed, Embase, CINAHL, PsycINFO and Google Scholar. These databases are chosen to ensure comprehensive coverage of the literature to meet our review objectives.

    Our search strategy aims to achieve a high degree of sensitivity and specificity. We have designed a three-block search strategy, built on the concepts of ‘Condition’, ‘Cross-Sectoral Collaboration, Collaboration Models/Health and Social Care’ and ‘Implementation and Evaluation’. This approach aligns with our inclusive and broad search objectives, enabling us to capture a wide spectrum of relevant studies. Specifically, we will combine the following blocks using Boolean operators:

    1. Condition: Autism spectrum disorder (ASD) and attention-deficit/hyperactivity disorder (ADHD), focusing on these specific neurodevelopmental disorders.

    2. Cross-sectoral collaboration, collaboration models/health and social care: Concepts such as ‘cross-sector collaboration’, ‘multi-agency’, ‘integrated care’ and terms related to collaboration models, healthcare delivery and social support structures.

    3. Implementation and evaluation: Aspects of implementation and evaluation, including ‘implementation science’, ‘programme evaluation’ and ‘outcome assessment’.

    We will employ a combination of Medical Subject Headings, Emtree terms, database-specific subject headings and relevant free-text terms across all databases. Appropriate truncations will be applied where suitable to capture all relevant variants of search terms. Searches will be restricted to the title and abstract fields for free-text terms to improve specificity and reduce irrelevant results.

    The search strategy will be iterative, and we will revise it as necessary based on our familiarity with the evidence base and any new keywords or concepts that emerge during the search process.

    We will examine the reference lists of included papers to identify additional potential sources and studies relevant to our inclusion criteria, performing a snowball search on studies eligible for full-text screening. Recognising the importance of grey literature, we will search for protocols, manuals or recommendations from health and social services in other countries. Our grey literature search will focus on evidence from Denmark, Sweden, Norway, England and Australia, given their comparable healthcare systems and emphasis on cross-sector collaborations.

    Only studies published in English, Danish, Norwegian and Swedish will be included, reflecting the linguistic capabilities of the review team and ensuring accurate interpretation and assessment of materials without language barriers.

    A full, detailed search strategy for each database, including the terms and limits used, is attached as supplementary material for transparency and reproducibility. The search strategies are provided in online supplemental appendix 1.

    Supplemental material

    Source of evidence selection

    This review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) guidelines,59 ensuring transparency and completeness in reporting.

    The first author (RKK) will conduct the searches in close collaboration with the research team and will consult a librarian specialist to guide and validate each step of the search process. The searches will be carried out between 1 December 2024 and 1 January 2025. This approach will enable us to rerun the search if necessary due to any time constraints or unforeseen obstacles.

    All results will be saved to EndNote, where duplicates will be removed initially. The remaining results will be imported into Covidence, where a second duplicate check will be performed. Authors RKK and JGD will be responsible for abstract screening; any conflicts will be discussed and resolved with authors PTA and NB. The same procedure will apply to full-text screening. RKK and EDM will perform the grey literature search. The relevance of identified materials will be discussed and agreed upon by the full research team.

    Initially, RKK and JGD will read the charted studies at an abstract level, followed by a full-text review if the abstracts meet the inclusion criteria. The process and choices will be documented in the PRISMA-ScR flowchart for transparency.

    Data extraction

    Data extraction will be conducted using Covidence software, where a standardised template will be developed to ensure transparent and consistent data collection across all included studies. This template will capture basic study information such as author(s), publication year, country, study design, population characteristics and key findings. See table 2 for an overview of items of Study characteristics.

    View this table:
    Table 2

    Study characteristics

    Additionally, the template will include specific fields to extract data that inform our study objectives, particularly focusing on the implementation factors, contextual influences and characteristics of the cross-sectoral collaboration models initiated at the outset of assessment for ADHD and ASD. We will assess the implementation level of implemented cross-sectoral models of collaboration reported in the included studies by using the five questions informed by the 5-item rubric of Kemp et al 46 combined with the framework CFIR.58 The items are represented in table 3.

    View this table:
    Table 3

    Template for systematic data extraction

    Initially, we will deductively extract data according to the predefined categories aligned with our research questions and theoretical frameworks. Concurrently, we will inductively identify and extract unanticipated themes or concepts that arise from the data, ensuring a comprehensive understanding of the evidence. This combined approach allows us to systematically collect relevant information while remaining adaptable to new findings that contribute to our understanding of cross-sectoral collaboration models for ADHD and ASD assessments.

    Analysis of the evidence and presentation of results

    According to the data-extracting plan, we will present the specific study characteristics in a descriptive table, making an overview of found studies. This overview will serve as a mapping of found studies. Further, we will use the Consolidated Framework for Implementation Research (CFIR) and Proctor et al’s Implementation Outcomes Framework to systematically assess and interpret the implementation of cross-sectoral collaboration models. CFIR is a comprehensive framework that provides a structured approach to identify factors influencing implementation success or failure across different contexts. It encompasses five major domains: intervention characteristics, outer setting, inner setting, characteristics of individuals involved and the implementation process itself.58

    Proctor et al’s Implementation Outcomes Framework outlines key outcomes to evaluate the effectiveness of implementation efforts, including acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost, penetration and sustainability.46 Using this framework allows us to systematically assess the implementation outcomes reported in the studies, providing measurable metrics to evaluate and compare different collaboration models.

    We will combine a frequency count with a descriptive presentation in our analysis. The frequency count will quantify how often specific implementation factors and outcomes, as defined by Proctor et al, are reported across the included studies. This quantitative approach will highlight common trends, gaps and areas requiring further research. Alongside this, we will provide detailed descriptive accounts of the implementation processes, contextual factors and experiences reported in the studies. By using CFIR as a guiding framework, we will capture the complexity and richness of the implementation contexts, offering insights into how and why certain factors influence outcomes.

    This combined approach ensures a comprehensive and transparent analysis, allowing us to not only map the prevalence of implementation factors but also to understand the underlying contexts and mechanisms. It enhances the depth of our findings, providing valuable information for stakeholders seeking to develop or refine cross-sectoral collaboration models for ADHD and ASD assessments.

    Consultation

    In developing this scoping review protocol, two of the authors bring extensive experience with scoping reviews. Additionally, we have consulted, and will continue to consult, a senior librarian from the University of Southern Denmark to ensure the quality and rigour of the process. A follow-up consultation, combining the findings of this study with additional interviews involving key stakeholders such as healthcare professionals, social workers, teachers, parents and children, would be a potential next step. Although this is beyond the current scope, such an approach could provide valuable validation of the study’s findings, enhancing their relevance and applicability.

    Appraisal of study quality

    If deemed feasible and on finding specific studies with a presented study design, we will assess the study quality based on the study’s design and appropriate quality assessment checklists.

    Ethical considerations and dissemination

    No ethical approval has been obtained for this review protocol, as this study is based on existing published literature. This study will follow the Danish Code of Conduct for Research Integrity.54 We will disseminate findings from this review at national and international conferences, as well as imbed results in the future development of cross-sectoral collaboration models targeted at individuals referred for assessment of neurodevelopmental disorders.

    Ethics statements

    Patient consent for publication

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    Footnotes

    • Contributors RKK is the guarantor and the primary author. NB, JDG and PTA provide supervision and revision in collaboration with RKK. EDM participates in the grey literature search process. AI was used to perform grammar checks and provide guidance in better grammar.

    • Funding This scoping review protocol is part of a Danish study funded by the Psychiatric Research Foundation in the Region of Southern Denmark.

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were not involved in the design, conduct, reporting or dissemination plans of this research.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.