NEUROPSYK - Quality Registry for Neurodevelopmental Disorders
Swedish healthcare Quality Registries are tools for the evaluation and improvement of health care as well as population-based research. There are several national quality registries in Sweden focusing on psychiatric disorders, but still few patients with autism spectrum disorder and most other DSM-5 defined neurodevelopmental disorders (NDD) are included across lifetime and service provider. Furthermore, health care professionals have called for more user-friendly, time-saving, and clinically informative registers.
In order to fill this gap, the NEUROPSYK Quality Register was established in 2014 by the Center of Neurodevelopmental Disorders at Karolinska Institutet (KIND), formally a clinical register managed by the Stockholm Health Care Services in Stockholm County Council.
As of March 2018, NEUROPSYK included over 4 000 patients with NDD and 13 000 health care visits. The registry fully accounts for all current legal requirements concerning quality registries in Sweden, e.g. regulations in the Swedish Patient Data Act.
The main objective of NEUROPSYK is to improve clinical services for individuals with autism and other NDD through adequate health care follow-up. For example, the implementation of existing regional and upcoming national guidelines for assessment and treatment of NDDs in public and private care, implementation and outcomes of evidence based methods and the coordination of care through real time information on actual pathways for these patients.
NEUROPSYK includes patients of all ages receiving a diagnosis within the NDD umbrella of in DSM-5. This includes autism spectrum disorder (ASD), intellectual disabilities, communication disorders, specific learning disorders, attention-deficit hyperactivity disorder, and motor disorders. Medication and behavioural interventions are recorded and patient outcomes over time are measured with Clinical Global Impression (CGI), Global Assessment of Functioning (GAF/C-GAS), and patient reported health related quality of life (Disabkids). NEUROPSYK collaborates with all four of the largest patient organizations for NDDs.
Examples of variables included in NEUROPSYK
- Demographic information
- County, care unit and health care professionals involved
- Type of treatment/measure
- Pharmacological treatment
- GAF (Global Assessment of Functioning)
- CGAS (Children's Global Assessment Scale)
- DD-CGAS (CGAS for Developmental Disabilities)
- CGI-S (Clinical Global Impression-Severity)
NEUROPSYK minimizes administrative work for health care professionals through integration with digital structured patient records, increasing the likelihood for high coverage and data quality. NEUROPSYK can be used by health care staff and managers to optimize health care planning, allowing more effective allocation of resources to the health care of individuals with neurodevelopmental disorders.
In conclusion, NEUROPSYK combines several strengths making it an example for a new generation of quality and research registers in NDDs and beyond in health care.
Assistant registry manager
- Poster for the International Forum on Quality and Safety in Healthcare 2016: "Towards a new generation of quality registries in autism and other neurodevelopmental disorders; The example of NEUROPSYK"
- Toward a new generation of quality registries for neurodevelopmental disorders: the example of NEUROPSYK. Löfgren Wilteus, A., Bartonek, F., Borg, J. & Bölte, S. (2016) Scandinavian Journal of Child and Adolescent Psychiatry and Psychology, 4(3), 141-146.