Short summary

The purpose of this study is to investigate the impact of PRO-based follow-up for epilepsy patients in the neurological outpatient clinics in the Region of Southern Denmark. The study aims at comparing PRO-based follow-up with prior clinical practice through a comparison of selected outcome measures before and after PRO was implemented, for both PRO- and non-PRO patients. 

Rationale

Patient-Reported Outcomes (PRO) have been defined by the U.S. Department of Health and Human Services Food and Drug Administration as "(...) any report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else". PRO is receiving increasing attention in clinical settings, as it enables measurements of important aspects of health like symptoms, quality of life and satisfaction with medical treatment. 
The first national PRO project in Denmark, the so-called RSI project, was initiated in 2016 by the Danish Parliament, Local Government Denmark and the Danish Regions. The RSI project is about using PRO to prioritize ambulant consultations for epilepsy and prostate cancer patients and to support the chemotherapy treatment for breast cancer patients. Moreover, the project aims at strengthening the dialogue between healthcare professionals and patients and get the patients more involved in their treatment. 
Qualitative studies have provided insight in the last two aims. However, PRO-based follow-up as a way to prioritize ambulant consultations have not yet been studied. 
The purpose of this study is to investigate the impacts of PRO-based follow-up for epilepsy patients in the neurological outpatient clinics in the Region of Southern Denmark. The study aims at comparing PRO-based follow-up with prior clinical practice through a comparison of selected outcome measures before and after PRO was implemented, for both PRO- and non-PRO patients.
 Studying the impacts of PRO-based follow-up is necessary for quality assuring the treatment of epilepsy patients in Denmark, strengthening the decision-making processes about resource allocation in the health care sector and increasing the transparency of publicly funded organizations. 

Description of the cohort

Data will be collected for patients with an epilepsy diagnosis (ICD-10: DG40*), who have been followed in one of the neurological outpatient clinics in Esbjerg, Kolding, Odense and Sønderborg at some point in the period 01.01.15-31.08.19.

Data and biological material

Data on patient characteristics, inpatient and outpatient treatments and PRO questionnaires are collected. Moreover, data on DRG and DAGS charges for all inpatient and outpatient treatments are collected.

Publications associated with the project

Syddansk Universitet

• Stud.cand.scient.san.publ. Camilla Tykgaard Clausen

Kvalitets- og Forbedringsafdelingen, Sydvestjysk Sygehus

• Kvalitetskonsulent Line Hvidberg, PhD 

Kvalitets- og Forbedringsafdelingen, Sydvestjysk Sygehus 

• Kvalitets- og Forbedringschef Linda Schumann Scheel, PhD, MBA 

DaCHE Dansk center for sundhedsøkonomisk forskning, Syddansk Universitet

• Lektor Trine Kjær, PhD