The Lombardy Region's ADHD Registry: a tool for improving pathways of care

Key words: Attention deficit disorder, Prevalence, Disease registry, Treatment planning, Epidemiology

Background - Despite a pooled, worldwide ADHD prevalence of 5.29% in children and adolescents, the rates vary widely between and within countries. Such variability in prevalence rates often corresponds to heterogeneous methodologies used for diagnostic evaluation in the studies. The aim was to estimate the prevalence of ADHD and define the socio-demographic, clinical, and prescription profiles of the subjects enrolled in Italy’s Lombardy Region’s ADHD Register.
Method - Data on patients evaluated by the 18 regional ADHD reference centres in the 2012-2013 period were analysed.
Results - 753 of 1.150 (65%) suspected patients received a diagnosis of ADHD (M:F=6:1; range:5-17 yrs). In 24% of cases there was a family history of ADHD. 483 (64%) patients had at least one psychopathological disorder, the more common of which were learning disorders (35%), sleep disturbances (14%), and oppositional defiant disorder (13%), while 68 (9%) patients had other chronic medical conditions. 84% of patients received a prescription for psychoeducational interventions (most commonly parent training, n=428, 82%, child training, n=308, 59%, and teacher training, n=173, 33%), 2% received only pharmacological treatment, and 14% a combination of both. Of the 115 patients receiving drug therapy, 95 (83%) were treated with methylphenidate, 7% (n=8) with atomoxetine, and 10% (n=12) with another drug, especially risperidone. Compared to subjects treated with a psychoeducational intervention alone, patients with drug prescriptions more commonly presented values of CGI-S of 5 or higher (p< .0001), lower cognitive levels (p= .0019), and associated disorders, such as oppositional defiant disorder (p< .0001) and sleep disturbances (p=.0007).
Conclusions - The registry has revealed to be an essential tool for a continuous, systematic monitoring of patterns of care, and allows resources to be invested appropriately, based on documented needs, thus promoting progressive, significant improvements in clinical practice and ensuring an efficient and homogeneous quality of care.