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.
