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Quality of Life Research
Published in: Quality of Life Research 10/2019

Open Access 01-10-2019

Routine incorporation of longer-term patient-reported outcomes into a Dutch trauma registry

Authors: Quirine M. J. van der Vliet, Abhiram R. Bhashyam, Falco Hietbrink, R. Marijn Houwert, F. Cumhur Öner, Luke P. H. Leenen

Published in: Quality of Life Research | Issue 10/2019

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Abstract

Purpose

Routine collection of post-discharge patient-reported outcomes within trauma registries can be used to benchmark quality of trauma care. This process is dependent on geographic and cultural context, but results are lacking regarding the European experience. We aimed to investigate the feasibility of routine inclusion of longer-term patient-reported health-related quality of life (HRQoL) in a Dutch National Trauma Database (DNTD) and to characterize these outcomes in a prospective cohort study.

Methods

All adult patients (≥ 18 years) who presented for traumatic injury in 2015–2016 and met the inclusion criteria of the DNTD were included. Inclusion criteria of the DNTD are presence of traumatic injury, hospital presentation within 48 h from trauma and hospital admission for treatment of traumatic injury or immediate mortality from traumatic injury after presentation. Exclusion criteria were death, mental impairment, insufficient command of Dutch language and residency outside the Netherlands. Primary outcomes were process-related measures of feasibility (response rate, response methods and reasons for non-response). Secondary outcomes were HRQoL measures [EuroQOL 5-Dimensions 3-Level (EQ-5D-3L) with added cognitive dimension and Visual Analogue Scale (EQ-VAS)].

Results

2025 unique patients met the initial inclusion criteria, with 1753 patients eligible for follow-up. Of these, 1315 patients participated (response rate 75%). The majority of questionnaires, 990 (75%), were completed on paper, with an additional 325 (25%) through telephone interviews. Primary reason for non-response was lack of contact information (245/438 non-responders; 56%). Median EQ-5D score was 0.81 (IQR 0.68–1.00) (mean 0.74; SD 0.31) and median EQ-VAS score was 78 (IQR 65–90). Compared to a Dutch reference population (mean EQ-5D = 0.87), EQ-5D scores were significantly lower (p < 0.001).

Conclusions

Routine collection of HRQoL is feasible within European health systems, like in the Netherlands. Further integration of these measures into trauma registries may aid worldwide benchmarking of trauma care quality.
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Metadata
Title
Routine incorporation of longer-term patient-reported outcomes into a Dutch trauma registry
Authors
Quirine M. J. van der Vliet
Abhiram R. Bhashyam
Falco Hietbrink
R. Marijn Houwert
F. Cumhur Öner
Luke P. H. Leenen
Publication date
01-10-2019
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 10/2019
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-019-02211-y

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