Background:

Attention deficit hyperactivity disorder (ADHD) is the most common childhood neurodevelopmental disorder. It affects around 5% of children and adolescents, and up to 40% continue to experience symptoms into adulthood. Primary care practitioners (e.g., general practitioners (GPs), nurses, link workers, clinical pharmacists) play an important role in the healthcare of young people (YP) with ADHD, particularly due to long waiting times in adult mental health services, and patchy provision of specialist services. However, many practitioners feel unsure about how to support YP at this vulnerable stage in their lives. Practitioners report concerns about prescribing ADHD medication and a desire for more guidance. Currently, little is known about how YP with ADHD are supported in primary care, the strengths and weakness of existing care pathways, and how care can be improved.

Aims:

To provide an evidence-base by mapping current services, and co-produce guidance to improve and better co-ordinate primary care for YP aged 16-25 with ADHD.

Methods:

Three interlinked studies. A mapping study including a national survey of stakeholders to map patient pathways, prescribing practice, shared-care arrangements, and practitioner roles. A qualitative study including semi-structured interviews with YP and practitioners, to gain insight into experiences of 'what works' and 'what is needed'. Workshops to co-develop a map of patient pathways, key messages, and clinical guidance.

Patient Involvement:

This research has been developed in response to identified gaps in services, and requests from people with ADHD. The team includes young people with ADHD whose input will help ensure the research is sensitive and relevant, and an academic GP to ensure identified solutions are deliverable within primary care settings.

Impact:

The expected impact of this research is improvement of the quality and experience of care for YP with ADHD. Also, to improve experiences of primary care providers facing difficulties managing ADHD.

This research aims to map current services and co-create evidence-based guidance to improve and better co-ordinate primary care for young people aged 16-25 years with ADHD.

OBJECTIVES

The objectives of this research are to:

1. Develop a national map and overview of current primary care pathways and prescribing practice in the management of young people with ADHD

2. Explore:

   1. Primary care providers and related organisations' needs for information resources and prescribing support in their roles managing care for young people with ADHD
   2. The expectations and needs of young people aged 16-25 regarding primary care ADHD support, information, and management

3. Co-produce evidence informed guidance to better co-ordinate primary care for young people with ADHD, based on discussions around findings from objectives 1, 2a and 2b

OUTCOMES

The outcomes of this research will be shaped by close work with professionals and members of the community, via the practice and policy research advisory group (P-RAG) and young person and parent/carer research advisory group (Y-RAG) groups, to ensure their relevance and utility. Anticipated outcomes include:

1. National overview of primary care provision for young people with ADHD across England, including:

   1. Geographic map, showing variation in provision by NHS region or appropriate organisational boundaries
   2. Summary of existing care pathways for the management of young people with ADHD in primary care, including exemplars of best practice

2. Qualitative summary of the perspectives of people involved in delivering and in need of care, on the management of ADHD in primary care including:

   1. Health professionals' needs for information resources and prescribing support
   2. Young people with ADHD and their parent/carers' needs for information resources, healthcare, and support with self-management

3. Co-produced guidance on how to better co-ordinate and design primary care for young people aged 16-25 with ADHD.

STUDY DESIGN and METHODS Overview: This mixed methods study consists of three work packages. Each WP involves data collection/creation working with the following stakeholder groups.

• Patients, with a focus on young people (aged 16-25) with ADHD, and their parent/carers
• Health professionals, with a focus on those in primary care (including general practitioners (GPs), specialist nurses, mental health practitioners, and clinical pharmacists)
• Commissioners/providers of NHS healthcare for people with ADHD

Participants will include people aged 16 or over with lived experience of ADHD (and their parent/carers), health professionals with a focus on primary care (such as GPs, nurses, mental health practitioners, and clinical pharmacists), and primary care commissioners/providers. Sampling, recruitment strategies, and eligibility criteria, vary slightly between work packages, as outlined below.

WP1 SURVEY

Inclusion Criteria:

Self-identifies as

• Being at least one of the following:

  • A person aged 16 or over with lived experience of ADHD, or parent/carer of a person with ADHD
  • Health professional (person working in any role that provides healthcare services, include NHS, voluntary and private services, clinical, managerial, leadership and administrative roles)
  • Commissioner/provider of National Health Service (NHS) healthcare services (e.g., member of clinical commissioning group, primary care network (PCN), integrated care system (ICS), or another NHS organisation)

• Currently resident, working, or studying in England

Exclusion Criteria:

• Does not identify as a person aged 16 or over with lived experience of ADHD, a health professional, or a commissioner/provider of NHS health services
• Not currently resident, working, or studying in England

WP2 QUALITATIVE STUDY

Inclusion Criteria:

• One of the following:

  • Young person aged 16-25 with lived experience of ADHD, or a parent/carer of a young person with ADHD
  • Health professional (person that provides healthcare services with a focus on primary care, including clinical, managerial, leadership and administrative roles)
  • Commissioner/provider of healthcare services (e.g., member of clinical commissioning group, PCN, ICS, NHS, or another organisation)

• Currently resident or working in England

• Currently resident or working close to one of the qualitative study sites identified following WP1, where 'close to' means located within the same geographic locality (to be decided based on findings from WP1)

Exclusion Criteria:

• Not a young person aged 16-25 with lived experience of ADHD (or a parent/carer), a health professional, or commissioner/provider of health services
• Not currently resident or working in England
• Not currently resident, working, or studying close to one of the qualitative study sites identified following WP1, where 'close to' means located within the same geographic locality (to be decided based on findings from WP1)

WP3 Co-PRODUCTION

Inclusion Criteria:

• One of the following:

  • Young person aged 16-25 with lived experience of ADHD, or a parent/carer of a young person with ADHD
  • Health professional (person that provides healthcare services, including clinical, managerial, leadership and administrative roles)
  • Commissioner/provider of NHS healthcare services (e.g., member of clinical commissioning group, PCN, ICS, local authority, or another NHS organisation)
  • A member of the MAP study research team

• Currently resident, working, or studying in England

• Willing and able to work collaboratively and engage in consultations to co-produce evidence-based guidance for improving the co-ordination of primary care for young people with ADHD

Exclusion Criteria:

• Not a young person aged 16-25 with lived experience of ADHD (or a parent/carer), a health professional, commissioner/provider of NHS health services, or a member of the MAP study research team
• Not currently resident, working, or studying in England
• Not willing and able to work collaboratively and engage in consultations to co-produce evidence-based guidance for improving the co-ordination of primary care for young people with ADHD

WP1 SURVEY The sampling frame for WP1 includes all stakeholders aged 16 or over with an interest in providing or receiving health care for young people with ADHD, as well as those involved in providing/commissioning local primary care provision.

WP2 QUALITATIVE STUDY The sampling frame for WP2 consists of a purposive selection of stakeholders.

WP3 CO-PRODUCTION The sampling frame for WP3 consists of a purposive selection of key stakeholders. In addition to the key stakeholder groups outlined above, co-production activities will also involve MAP study researchers.

Arrangements for access to the final study dataset are outlined in the MAP study data management plan. In summary:

• Only members of the study research team will have access to the full dataset.
• It is possible that anonymised data from this dataset may be used for secondary analysis. This possibility is detailed in the study Participant Information Sheet (PIS) and Consent forms and would therefore only take place with the consent of the participants. All patient documentation reflects the possible future use an anonymised subset of these data in research.