Toward a new generation of quality registries for neurodevelopmental disorders: the example of NEUROPSYK

Abstract

Swedish healthcare quality registries are tools for the evaluation and improvement of clinical services and population-based research. There are presently 11 national quality registries that focus on psychiatric disorders; but none cover all neurodevelopmental disorders (NDDs) as defined by the International Statistical Classification of Diseases and Related Health Problems, To fill this gap, the NEUROPSYK Quality Register was established in 2014 by the Center of Neurodevelopmental Disorders at Karolinska Institutet. Initially, this was a clinical register of child and adolescent psychiatry for the Stockholm County Council.The main objectives of NEUROPSYK are to improve the assessment of and interventions used for individuals with NDDs by doing the following: 1) supporting adequate follow-up related to the implementation of existing regional and national guidelines for assessment and treatment; 2) providing clinical decision-making aids; and 3) conducting large-scale clinical epidemiological research. The registry incorporates all legal requirements for quality registries in Sweden.NEUROPSYK includes patients of all ages diagnosed with NDDs per the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. These diagnoses include autism spectrum disorder, attention-deficit/hyperactivity disorder, intellectual disabilities, communication disorders, specific learning disorders, and motor disorders. Medication and behavioral interventions are recorded and patient outcomes over time are measured with the economical and user-friendly Clinical Global Impression tool, the Global Assessment of Functioning instrument, and patient-reported health-related quality of life.NEUROPSYK minimizes administrative work for health care professionals because it is integrated with structured digital patient records, thereby increasing the likelihood of high coverage and data quality. NEUROPSYK combines several strengths to exemplify a new generation of quality research registers for use in psychiatry and other areas of health care.