Evidence suggests that ADHD is underdiagnosed in many countries worldwide, and that under-treatment of ADHD in both childhood and adulthood may lead to cognitive and behavioural impairments, higher rates of criminal and addictive behaviours, and issues at school or work, potentially posing a significant societal and economic burden. In most cases, General Practitioners (GPs) act as the ‘gatekeepers’ for referral of individuals with ADHD to specialist secondary care (Child and Adolescent or Adult Mental Health Services [CAMHS and AMHS, respectively]) for diagnosis, treatment and management of ADHD. However, many GPs have reported low levels of confidence in their ability to recognise and adequately manage ADHD in their patients, with a lack of education and training around ADHD, a lack of time and financial resources, and misconceptions about ADHD all identified as barriers to GPs’ ability to identify and refer patients for ADHD treatment (French et al, 2019). This study sought to expand knowledge of barriers to referral to secondary care by gaining an insight into the perceptions and experiences of the ADHD care pathway of multiple stakeholders.
The investigators conducted semi-structured interviews with 19 participants (representing the views of 20 individuals – one participant responded from her perspectives as both an adult with ADHD and as a parent of a child with ADHD) from across the UK over a 3-month period in late 2018. The participants, who were carefully selected from four key stakeholder groups to provide a representative sample of stakeholders directly involved in the ADHD care pathway, comprised the following:
- Five GPs recruited from the local Clinical Research Network via direct contact to practices.
- Five adults with ADHD recruited from ADHD adult support groups.
- Five parents of children with ADHD recruited from parenting support groups.
- Five secondary care specialists; of these, two worked in AMHS, two worked in CAMHS and one worked in a community paediatric team.
Three interview schedules were developed based on a review of recent literature (one for GPs, one for patients and one for secondary care professionals), which included specific topics as well as more open-ended questions, asked from different standpoints according to stakeholder group.* Interviews were recorded and transcribed anonymously, verbatim. The transcripts were analysed using the principles of grounded theory, with themes and subthemes identified using an adapted approach of Braun and Clarke’s six-stage process. The lead investigator assigned preliminary codes, identified in a coding manual, to each emerging theme in the transcripts, which were then classified into broader themes using comparative analysis within and between transcripts. The broader themes were reviewed and refined to generate a final list of themes and subthemes identified from the interviews. A second investigator verified the coding manual and reviewed the theme extraction against the transcripts, and any discrepancies were discussed and resolved.
The codes identified from the interview transcripts highlighted five main themes in participants’ perceptions and experiences of the ADHD care pathway. Each theme was identifiable in all interviews and was reflected across all stakeholder groups. The themes were as follows:
1. Lack of identification of ADHD in primary care
- All interviewees indicated that GPs were not commonly the first stakeholder to identify ADHD in patients; participants all expressed the same perception that it was patients themselves who initially raised the suggestion of ADHD as the cause of their symptoms. Only one GP described identifying ADHD in his patients, but only ~10% of the time; all other GPs reported never having identified ADHD in a patient.
- Patients reported that since the referral process is not commonly led by GPs, they had to proactively ask for a referral, and subsequently had to push to receive a diagnosis. Patients cited personal strength of character and stubbornness as key factors in progressing through the referral process, and reflected that without constant effort on their part, they would not have received a diagnosis. Some patients reported seeking a private diagnosis in order to bypass the barrier of the lack of ADHD recognition from their GP.
2. Lack of clear diagnosis pathways and services
- All interviewees expressed the view that their experiences of referral, diagnosis and management of ADHD depended on the services provided in their local area, and the diagnosis pathways in place. In most cases, these were reported to be very unclear.
- The complexity of available services was discussed from several perspectives; stakeholders commented on the lack of service availability, GPs’ lack of knowledge about what secondary care services were available or even whether they existed locally, and the fact that service availability varied widely depending on geographical area.
- The lack of services and clear pathways had implications on waiting lists for referrals. Both patients and healthcare professionals reported feeling frustrated about the long delays that patients may experience in getting a first appointment after referral or receiving a diagnosis, due to limited resources. Some healthcare professionals reported that the introduction of triaging systems, intended to manage waiting lists, may in fact risk losing patients through adding another obstacle into the referral process.
- Age-specific issues were also identified as barriers to successful referral and diagnosis of ADHD. The main issue identified was the lack of available services for adults with ADHD, which also had implications for adolescents transitioning from child to adult services. GPs reported worrying that having no local adult services available implied that they themselves would need to continue managing these patients, without adequate training or competence.
3. GPs’ knowledge of ADHD and misconceptions
- A limited knowledge of ADHD among GPs was a common theme throughout the interviews. GPs, secondary care professionals and patients alike all expressed the opinion that GPs lacked sufficient knowledge to identify or manage ADHD, and in particular, lacked knowledge about the process after referral. This was reported to have implications both for patients, in terms of a lack of guidance about next steps, and for secondary services, in terms of not receiving sufficient information from GPs about each referral, potentially resulting in delays.
- GPs’ misconceptions about ADHD were also frequently discussed. In particular, respondents (including GPs) reported that GPs often cited the concepts of social economic status (SES) and parenting as causative factors in ADHD. GPs reported feeling that SES was a strong risk factor for ADHD, and that they would expect patients from lower SES to be more likely to seek ADHD diagnoses than patients from higher SES. Additionally, parents of children with ADHD reported feeling that their parenting ability was being questioned as part of the diagnostic process, while GPs reported that their decision to refer a patient for ADHD diagnosis may sometimes be influenced by the patient’s behaviour during the consultation.
4. Impact of diagnosis and the risks linked to no diagnosis
- The theme of a positive impact of receiving an ADHD diagnosis, in terms of gaining access to specialist care and treatment, was discussed by patients and secondary care workers.
- However, adult patients reported mixed emotions upon receiving an ADHD diagnosis, with some expressing frustration that their ADHD had previously gone undiagnosed and treatment opportunities missed, potentially having negative implications for their mental health.
- GPs expressed negative bias toward ADHD diagnoses, and reported being reluctant to diagnose due to the potential stigma attached to ADHD. In particular, GPs expressed the view that they did not see the benefit of seeking an ADHD diagnosis in adulthood, given that the adult had been able to manage their symptoms thus far.
5. Difficult communication between multiple stakeholders
- A lack of clarity in communications between primary and secondary care services, and between services and patients, was identified as a common theme leading to delays and increased complexity of the referral and diagnosis pathway.
- GPs reported not knowing which services to refer to, or what information to provide, in order to successfully refer a patient. Specialist services reported a lack of accurate information about specific referrals from GPs, meaning that they were unsure how to proceed with diagnosis.
- Patients reported receiving insufficient information from both their GP and secondary services about the diagnostic and management processes. Patients reported feeling ‘passed around’ between primary and secondary care services, with neither appearing willing to take responsibility for leading the referral and diagnosis process. There was a feeling of frustration amongst patients at the apparent reluctance of GPs and secondary services to provide information on the process.
This study had some limitations, including that the views reported were based on personal experiences across a small number of individuals and practices, and may not be widely generalisable to other stakeholders. Additionally, the majority of GPs who took part in the study were newly qualified (within 5 years) and may therefore have had limited experience of referring patients. Furthermore, the stakeholder group comprising parents of children with ADHD comprised only mothers; the lack of paternal views may therefore limit the applicability of the results.
The authors concluded that the themes identified in this study indicate that GPs are generally ill-equipped to identify and adequately manage ADHD, due to a lack of knowledge and resources, barriers in access to secondary care, and a lack of clear pathways and services. The authors suggested that increased ADHD-awareness training among GPs and greater integration between services may help to address this issue, and that clearer pathways and a greater number of services need to be made available in order to support individuals referred for a diagnosis of ADHD, with a particular focus on adult services and transitioning patients.
*The interview schedule for GPs included a greater number of specific questions than the other schedules, as this group was the main focus of the study. Interview schedules were applied flexibly and regularly reviewed, following a grounded theory approach, with questions added, changed or omitted as themes emerged and depending on the participant’s experience
French B, Sayal K, Daley D. Barriers and facilitators to understanding of ADHD in primary care: a mixed-method systematic review. Eur Child Adolesc Psychiatry 2019; 28: 1037-1064.
French B, Perez Vallejos E, Sayal K, et al. Awareness of ADHD in primary care: stakeholder perspectives. BMC Fam Pract 2020; 21: 45.