Managing young people with ADHD in primary care (MAP) study
Research type
Research Study
Full title
Managing young people with attention deficit hyperactivity disorder in primary care (MAP) study: mapping current practice and co-producing guidance on pathways to improve healthcare in an underserved population
IRAS ID
313424
Contact name
Anna Price
Contact email
Sponsor organisation
The University of Exeter
Duration of Study in the UK
1 years, 9 months, 2 days
Research summary
Research Summary:
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. They 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.Summary of Results:
Objective 1: Develop a national overview and map of current primary care pathways and shared care protocols, information resources, and prescribing practice in the management of YP with ADHD.
• Methods: A mapping study including a national survey of stakeholders to map patient pathways, prescribing practice, shared-care arrangements and practitioner roles.
• Results: Data from 782 responders (42 commissioners, 331 HCPs, 409 LEs) revealed differences in reported provision by stakeholder group, including for prescribing (95% of HCPs versus 64% of LEs). In all, >40% of responders reported extended AMHS wait times of ≥2 years. There was some variability by NHS region – for example, London had the lowest reported extended wait time (25%), while East of England had the highest (55%).
• Conclusions: Elements supporting appropriate shared-care prescribing of ADHD medication via primary care are not universally available in England. Coordinated approaches are needed to address these gaps.Objectives 2: Explore primary care providers and related organisations’ needs for information resources and prescribing support in their roles managing care for YP with ADHD and 3: Explore the expectations and needs of YP aged 16-25 regarding primary care ADHD support, information and management.
• Methods: A qualitative study including semi-structured interviews with YP and HCPs, to gain insight into experiences of ‘what works’ and ‘what is needed’.
• Results: 20 interviews were completed with 11 HCPs and nine people with lived experience. Three themes were generated: a system under stress, incompatibility between ADHD and the healthcare system, and strategies for change in ADHD primary care provision.
• Conclusions: Standardisation of ADHD management in primary care, providing better information and support for HCPs, and advising on reasonable adjustments for people with lived experience could help improve access to effective treatments for young people living with ADHD.
Objective 4: Co-produce evidence informed guidance, based on discussions around findings from 1-3.
• Methods: Co-production workshops involving HCPs, LEs, and researchers, created evidence-informed resources which collated experiences of multiple stakeholders.
• Results: LE advisors (7), HCPs (5), and researchers (3) co-produced a downloadable resource for young people and their supporters. The resource identified key stages on ADHD healthcare pathways, common barriers, and top tips recommended by people with lived experience, and verified by healthcare professionals. Key messages for primary care professionals were co-produced.
• Conclusions: Co-produced resources can help address barriers to accessing ADHD treatment and support via stretched NHS services. Collaborative working also highlighted the need for national policy change to alleviate pressures faced by healthcare professionals and patients.REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
22/YH/0132
Date of REC Opinion
28 Jun 2022
REC opinion
Favourable Opinion