Title: Improving knowledge, awareness, and diagnosis of attention deficit hyperactivity disorder (ADHD) in young women
Funder: Health and Care Research Wales (Welsh Government)

Abstract: Attention deficit hyperactivity disorder (ADHD) is a condition that affects about 1 in 20 individuals. It is less commonly diagnosed in girls and women. This may be because the symptoms of ADHD differ in girls/women and boys/men. Also, ADHD is diagnosed at a later age in women. This delay in being identified leads to differences in the healthcare someone receives and means that girls/women miss out on early support with their ADHD. This can lead to mental health problems, being less satisfied with friendships, and difficulties at school and in the workplace. We need research that will help us better understand what ADHD is like for girls/women, including what happens to those who do not get help when they are younger. Also, it is important to learn about why ADHD is sometimes missed and what challenges are more common for girls/women with ADHD. This knowledge is needed to help with recognising ADHD earlier and improving the mental health and wellbeing of girls/women with ADHD. Project aims We aim to better understand ADHD in women and to increase awareness and recognition of ADHD in this group. In particular, we plan: 1. To understand the healthcare experiences of young women who receive an ADHD diagnosis in adolescence, compared to in childhood. This will help to identify early signs of ADHD and to find out what happens when diagnosis is delayed. 2. To understand why young women are experiencing a delay in recognition for their ADHD. This will help to identify factors that might be used to cope with ADHD difficulties. 3. To create a new gender-inclusive tool to assess ADHD behaviours that are more common in girls/young women. This will help to recognise ADHD sooner in young children who would benefit from early support. Project design and plan To achieve these aims, we will use existing healthcare data and work in partnership with young people, parents/carers, and professionals. For the first aim, we will examine routine health records from young people (aged 18-25 years) in Wales. For the second aim, we will use information from a UK-wide study of young people and their parents/carers, who completed questionnaires between ages 5-17 years. We will also draw on data from Sweden, to examine whether our findings are seen in a different nation. We will compare young women who experienced delayed recognition of their ADHD (diagnosis in adolescence) to those who received a childhood diagnosis. We will also compare these groups to young women with no diagnosis and young men with and without a diagnosis. We will examine information about mental health, healthcare service use, school outcomes, social relationships, and genetic factors. For the final aim, we will speak to young adults (aged 18-25 years) with ADHD, to hear about their lived experiences and run focus groups with teachers, doctors, and parents/carers. Working together with these groups, we will identify behaviours linked to ADHD in gender-diverse young people. We will then collect information from parents/carers of primary school children (aged 9-11 years) to assess the usefulness of this new tool. Public involvement and dissemination The project will continue to be informed by a Youth Advisory Group of young people (aged 14-25 years), who have lived experience of ADHD and mental health conditions, and children with ADHD (aged 9-11 years). We will work in partnership with the UK charity ADHD Foundation, to identify young people, parents/carers, and professionals to work with and to promote the study outcomes. We will create free online training for teachers and doctors and raise awareness of ADHD and the study results through public lectures and social media.

Lay abstract: Attention deficit hyperactivity disorder (ADHD) is a condition that affects about 1 in 20 individuals. It is less commonly diagnosed in girls and women. This may be because the symptoms of ADHD differ in girls/women and boys/men. Also, ADHD is diagnosed at a later age in women. This delay in being identified leads to differences in the healthcare someone receives and means that girls/women miss out on early support with their ADHD. This can lead to mental health problems, being less satisfied with friendships, and difficulties at school and in the workplace. We need research that will help us better understand what ADHD is like for girls/women, including what happens to those who do not get help when they are younger. Also, it is important to learn about why ADHD is sometimes missed and what challenges are more common for girls/women with ADHD. This knowledge is needed to help with recognising ADHD earlier and improving the mental health and wellbeing of girls/women with ADHD. Project aims We aim to better understand ADHD in women and to increase awareness and recognition of ADHD in this group. In particular, we plan: 1. To understand the healthcare experiences of young women who receive an ADHD diagnosis in adolescence, compared to in childhood. This will help to identify early signs of ADHD and to find out what happens when diagnosis is delayed. 2. To understand why young women are experiencing a delay in recognition for their ADHD. This will help to identify factors that might be used to cope with ADHD difficulties. 3. To create a new gender-inclusive tool to assess ADHD behaviours that are more common in girls/young women. This will help to recognise ADHD sooner in young children who would benefit from early support. Project design and plan To achieve these aims, we will use existing healthcare data and work in partnership with young people, parents/carers, and professionals. For the first aim, we will examine routine health records from young people (aged 18-25 years) in Wales. For the second aim, we will use information from a UK-wide study of young people and their parents/carers, who completed questionnaires between ages 5-17 years. We will also draw on data from Sweden, to examine whether our findings are seen in a different nation. We will compare young women who experienced delayed recognition of their ADHD (diagnosis in adolescence) to those who received a childhood diagnosis. We will also compare these groups to young women with no diagnosis and young men with and without a diagnosis. We will examine information about mental health, healthcare service use, school outcomes, social relationships, and genetic factors. For the final aim, we will speak to young adults (aged 18-25 years) with ADHD, to hear about their lived experiences and run focus groups with teachers, doctors, and parents/carers. Working together with these groups, we will identify behaviours linked to ADHD in gender-diverse young people. We will then collect information from parents/carers of primary school children (aged 9-11 years) to assess the usefulness of this new tool. Public involvement and dissemination The project will continue to be informed by a Youth Advisory Group of young people (aged 14-25 years), who have lived experience of ADHD and mental health conditions, and children with ADHD (aged 9-11 years). We will work in partnership with the UK charity ADHD Foundation, to identify young people, parents/carers, and professionals to work with and to promote the study outcomes. We will create free online training for teachers and doctors and raise awareness of ADHD and the study results through public lectures and social media.

Research activity codes: 2.4 SURVEILLANCE AND DISTRIBUTION;4.2 EVALUATION OF MARKERS AND TECHNOLOGIES
Health categories: MENTAL HEALTH