Implementation of a Patient Registry for Quality Monitoring at the Neurosurgery Department

Objective: Patient registries are observational studies that focus on understanding how routine clinical practice affects patient outcome. As opposed to clinical studies, which test a specific treatment, registries pragmatically describe the outcome of a given patient population. The quality of indication and outcome can be defined by the following questions: (1) Indication-Are treatment decisions correct? (2) Process-Are treatments administered correctly? (3) Short-term outcome-What are the results? (4) Long-term outcome-Is the outcome stable, deteriorating, or improving over time? On the basis of the large datasets available, trends can be detected early and can be distinguished from outliers and rare events. Furthermore, average results can be defined as “benchmarks.” Benchmarking allows internal or external comparison of health care providers. The comparison of products, treatments, indications can be adjusted with respect to well-defined patient populations.

Methods: All patients operated on by members of our department are entered into the registry. Patients are characterized by diagnosis codes (ICD-10), treatment codes (CHOP), ASA risk level, and general questions. The outcome is defined through scales validated for the respective indication together with a list of frequent complications. Data are collected at time of admission, at discharge, and at outpatient follow-up after 3 and 12 months. Implementation of the database in SecuTrial® assures data safety.

Results: Data acquisition compatible with the clinic workflow permits to include all eligible patients into the registry. We spent about 5 minutes to enter one surgical procedure into the database and another 10 minutes to register patient admission and discharge. The clinical outcome is entered into the registry if deemed relevant by the treating physician.

Conclusions: Apart from internal quality monitoring, the transparent communication of clinical outcome is obligatory for health care providers, in particular after the introduction of SwissDRG, which aims at cost transparency. Outcome transparency demands high-quality data that can be provided by a patient registry. To maintain a registry, sufficient manpower has to be provided.