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 presently 11 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 February 2016, NEUROPSYK included over 700 patients with NDD.
The main objective of NEUROPSYK is to improve clinical services for individuals with autism and other NDD through adequate follow-up of (1) the implementation of existing regional and upcoming national guidelines for assessment and treatment of NDDs in public and private care, (2) implementation and outcomes of evidence based methods and (3) the coordination of care through real time information on actual pathways for these patients. The registry fully accounts for all current legal requirements concerning quality registries in Sweden, e.g. regulations in the Swedish Patient Data Act.
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 behavioral 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 (EQ-5D/Disabkids). NEUROPSYK collaborates with all four of the largest patient organizations for NDDs and is involved in a project for implementation of patient reported measures for patients with Asperger’s syndrome.
NEUROPSYK minimizes administrative work for health care professionals through integration with digital structured patient records, increasing the likelihood for high coverage and data quality. 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.
Examples of variables included in NEUROPSYK are:
- Demographic information about patient
- County, care unit, 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 can be used by health care staff, managers, authorities and politicians to optimixe health care planning, allowing more effective allocation of resources of resources to the health care of indivituals with neurodevelopmental disorders.
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"