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

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.