Long waiting times for a first appointment with Child and Adolescent Neuropsychiatric Services (CANPS), including specialist ADHD centres, may result in an increased intensity in patients’ symptoms; patient, referrer and parental dissatisfaction and distrust in the service; loss of motivation and premature dropout from the treatment pathway; and poorer outcomes. In Italy, where the prevalence of ADHD among children and adolescents aged 5–17 years is estimated to be ~1.4% (range 1.1–3.1%) (Reale and Bonati 2018), a considerable number of children and adolescents with suspected ADHD access CANPS for diagnosis. This study aimed to examine waiting times for assessment of ADHD symptoms across a network of 18 Regional ADHD reference centres* in the Lombardy Region of Italy.
The authors searched the Regional ADHD Registry database at the end of 2018 and extracted data† on all children and adolescents (aged 5–17 years) who requested a first appointment between 1 January 2013 and 31 December 2017, and completed the diagnostic pathway. Diagnoses of ADHD were made according to the Diagnostic and Statistical Manual of Mental Disorders – 4th Edition (DSM-IV) criteria. Spatial analysis, using geographic information system software, was employed to describe the geographical distribution of patient access to each ADHD centre relative to the patients’ places of residence, with the 5-digit ZIP code for each child or adolescent’s home address used to determine their local health protection agency (ATS‡) and their closest ADHD centre. ADHD centre characteristics§ were summarised using descriptive statistics, while differences in population characteristics were evaluated using the Student’s t test, Wilcoxon test, Kruskal-Wallis test, and analysis of covariance, and trends in waiting times across the study period were analysed using Spearman’s rank correlation test. The authors assessed how the time taken from a patient’s first referral until diagnosis was affected by both ADHD centre characteristics and the clinical characteristics of the sample population. A generalised linear model analysis was conducted to assess how the wait time affected completion of the diagnostic path (“estimated waiting time”). For all statistical analyses, p < 0.05 was considered to indicate statistical significance.
In total, 2464 children and adolescents were referred to one of the ADHD centres for suspected ADHD during the study period. Of these, 2262 (92%) had completed the diagnostic procedure at the time of data extraction and were included in the study (median [range] age at first visit, 9 [5–17] years; 1292 [85%] male; 222 [15%] female). The findings of the study were as follows:
- The rate of referral for diagnosis of ADHD varied between the eight ATS regions, ranging from 0.68 to 3.17 per 1000 residents aged 5–17 years.
- Spatial analyses demonstrated that, among the 2262 children and adolescents, 1979 (88%) attended an ADHD centre within their local ATS, 1726 (76%) attended the ADHD centre closest to their home address (which may or may not have been located in their local ATS) and 1656 (73%) attended the ADHD centre closest to their home address within their local ATS.
- The median (range) number of children/adolescents accessing each of the 18 ADHD centres was 112 (25–396).
- Waiting times varied widely between the ADHD centres, with a median (range) waiting time for the first visit of 82 (14–212) days, and a median (range) time from referral to diagnosis of 177 (66–375) days. A 3-fold difference in the mean waiting time for completion of the diagnostic procedure was observed between centres (F = 55.49; p < 0.0001; minimum wait: 95 days [95% confidence interval 78–111]; maximum wait: 372 days [95% confidence interval 322–421]).
- At data extraction, 1954 (86%) of the sample population had received a diagnosis of a psychiatric disorder, and 1553 (69%) met DSM-IV criteria for ADHD; a further 151 (7%) of the sample population were diagnosed with a chronic medical disease.
- For each ADHD centre, no statistically significant associations were observed between the waiting time from referral to diagnosis, the number of hours worked per year by the centre’s clinical staff, or the number of children/adolescents who accessed the centre per year. However, statistically significant relationships were observed between waiting times and certain population characteristics:
- Shorter waiting times were observed for younger (5–8 years) vs older (9–17 years) individuals (median 163 vs 191 days; p = 0.003).
- Shorter waiting times were more likely for those who had vs those who did not have a support teacher at school (median 152 vs 181 days; p = 0.009), a motor delay (130 vs 180 days; p = 0.0018), a referral from another CANPS (133 vs 213 days; p < 0.0001), or a chronic medical disease (146 vs 180 days; p = 0.0010), and also for those with a Clinical Global Impression of Severity score of ≥5 vs ≤4 (155 vs 181 days; p = 0.0002).
- Longer waiting times from referral to diagnosis were observed for those diagnosed with psychiatric disorders vs those who were not (median 182 vs 159 days; p = 0.0139).
To the authors’ knowledge, this study, as part of a multimodal project, was the first large-scale evaluation of the time taken from referral to diagnosis across multiple ADHD centres, and of the relationship between waiting times and both centre and patient characteristics. However, the authors noted a limitation to their study in that the results refer specifically to patients who actually attended one of the 18 ADHD centres; the centres do not input patient data into the Regional ADHD Registry database unless a patient attends a centre, and therefore first appointment failures and patient dropouts could not be evaluated in this study.
The authors concluded that, despite common workloads shared across the ADHD centres in the Lombardy Region over the study period, waiting times varied widely between centres. They suggested that long waiting times in ADHD centres may negatively impact patient satisfaction and referrers’ opinions of a given ADHD centre. The authors also noted that such large differences in waiting times among children and adolescents with the same needs (i.e. a referral for suspected ADHD) but with different characteristics may indicate inequality. They suggested that interventions at both the individual centre and ATS levels may be required in order to ensure an equal standard of care across ADHD centres and to improve the efficiency and effectiveness of ADHD management in children and adolescents.
*The Regional ADHD reference centres are accredited by regional health authorities as specialised ADHD ‘hubs’ within the CANPS network. Information about all patients who accessed the 18 ADHD centres for diagnosis of suspected ADHD was collected by a Regional ADHD Registry, as part of a wider project aiming to improve ADHD management in children and adolescents once the disorder is suspected and the patient is referred
†Written informed consent was obtained from all patients before data collection, and data were anonymised prior to use in the study
‡The Lombardy Region is divided into eight regional ATS
§ADHD centre characteristics evaluated included: the number of children/adolescents who accessed the centre per year, who accessed the centre for the first time per year, and who were diagnosed with ADHD by the centre per year; the number of clinical staff professions; the total number of hours per year worked; the number of hours worked per year per child/adolescent with ≥1 access; the number of hours worked per year per child/adolescent with ≥1 access per clinical staff professionals; the waiting time for the first visit (days); and the time from the request to the diagnosis (days)
Bonati M, Cartabia M, Zanetti M, et al. Waiting times for diagnosis of attention-deficit hyperactivity disorder in children and adolescents referred to Italian ADHD centers must be reduced. BMC Health Serv Res 2019; 19: 673.
Reale L, Bonati M. ADHD prevalence estimates in Italian children and adolescents: a methodological issue. Ital J Pediatr 2018; 44: 108.