Access to diagnosis, treatment, and supportive services among pharmacotherapy-treated children/adolescents with ADHD in Europe: data from the Caregiver Perspective on Pediatric ADHD survey

Abstract

BackgroundAttention-deficit/hyperactivity disorder (ADHD) is one of the most common childhood psychiatric disorders and negatively impacts caregivers’ lives. Factors including barriers to accessing care, dissatisfaction with support services, and lack of caregiver resources may contribute to this.ObjectivesTo report caregivers’ experiences of ADHD diagnosis, behavioral therapy (BT), and supportive care for children/adolescents with ADHD.MethodsThe Caregiver Perspective on Pediatric ADHD (CAPPA) survey included caregivers of children/adolescents (6–17 years) from ten European countries who were currently receiving/had received ADHD pharmacotherapy in the previous 6 months. Caregivers reported experiences of obtaining an ADHD diagnosis, access to BT, availability of caregiver resources, and level of health care/school support. Pan-EU and country-specific descriptive statistics are reported; responses were compared across countries.ResultsOf 3,616 caregivers, 66% were female. Mean age of children/adolescents was 11.5 years; 80% were male. Mean time from the first doctor visit to diagnosis was 10.8 (95% confidence interval 10.2, 11.3) months; 31% of caregivers reported the greatest degrees of difficulty in obtaining an ADHD diagnosis; 44% of children/adolescents did not receive BT. Forty-seven percent of caregivers reported that sufficient resources were available, 44% were “very satisfied”/“satisfied” with medical care, and 50% found health care providers “very supportive”/“somewhat supportive”. Mainstream schools were attended by 82% of children/adolescents. Of those, 67% of caregivers thought schools could help more with the child/adolescent’s ADHD and 48% received extra help/special arrangement. Results varied significantly between countries (P<0.001, all parameters).ConclusionAlmost a third of caregivers reported a high degree of difficulty in obtaining an ADHD diagnosis for their child/adolescent, less than half felt that sufficient resources were available, and gaps in support from health care providers/schools were identified. Findings underscore the need to improve access to diagnosis and provision of supportive services to enable better standards of care, and potentially reduce the impact of child/adolescent ADHD on caregivers’ lives.

The impact of a computerised test of attention and activity (QbTest) on diagnostic decision‐making in children and young people with suspected attention deficit hyperactivity disorder: single‐blind randomised controlled trial

“…Our finding in the U.K., that just under one third of participants had not received an ADHD diagnostic determination within 6 months is supported by a recent European CAPPA survey of ADHD diagnostic practice (Fridman et al, 2017). This study found that, among ten EU countries, the UK had the longest mean duration from first doctor visit to a formal diagnosis of 18.3 months, compared to the shortest mean duration of 3.0 months for Italy and 10.8 months for the EU countries overall.…”

“…Hence, we used independent blinded research diagnostic assessments to compare diagnostic accuracy between the two trial arms. We are also reassured from the results of interviewing clinicians in the trial (Hall et al, 2017) that there was no suggestion that lack of blinding had any impact on diagnostic decision-making which we found to be faster than in a European CAPPA study examining diagnostic practice in the UK (Fridman et al, 2017). Another potential limitation with respect to external validity is that participants in the comparison group underwent the QbTest procedure, although the QbTest report was withheld from clinicians.…”

“…This approach is heavily reliant on subjective measures and clinical interpretation, which can lead to a lack of reliability and consistency in the diagnosis of ADHD (Ogundele et al, 2011). Furthermore, the process of ‘gold standard’ clinical interviews and data collection from multiple informants, and their interpretation, is time consuming and often impracticable in ‘real world’ clinical settings with frequent missing data and inconsistencies between observer reports leading to diagnostic uncertainty and delay (Kovshoff et al, 2012; Fridman et al, 2017). Early diagnosis and timely interventions reduce the risk of adverse long-term outcomes that are associated with ADHD such as antisocial behaviour, poor academic performance and social functioning (Shaw et al, 2012).…”

Awareness of ADHD in primary care: stakeholder perspectives

“…While waiting times were discussed in the interviews, all participants were asked about their own experience with delays, both in seeing a secondary care worker and in receiving a diagnosis. A recent study [32] investigated diagnosis times in Europe and found that the UK had the longest waiting time (on average 18.3 months) from first visit to the GP to a formal ADHD diagnosis. They also reported that the UK time from first noticing symptoms to a formal ADHD diagnosis was on average 31.9 months.…”

Clinical versus automated assessments of morphological variants in twins with and without neurodevelopmental disorders

“…Best practice guidelines indicate children undergoing assessment for NDDs like ASD and ADHD should receive physical examinations and for ASD in particular, an examination to identify morphological variants (Johnson et al, ; National Institute for Health and Care Excellence, ; Subcommittee on Attention‐Deficit/Hyperactivity Disorder Steering Committee on Quality Improvement Management et al, ). Despite efforts to identify NDDs earlier with behavioral screening measures, studies continue to demonstrate children often receive delayed diagnoses (Fridman, Banaschewski, Sikirica, Quintero, & Chen, ; Miodovnik, Harstad, Sideridis, & Huntington, ; Zuckerman, Lindly, & Sinche, ). Subsequently, researchers have explored different types and amounts of morphological variants as a tool for possibly detecting NDDs earlier, particularly for ASD and ADHD (e.g., Angkustsiri et al, ; Miles et al, ; Minahim & Rohde, ; Ozgen et al, ; Ozgen et al, ; Ozgen et al, ).…”