German-wide prospective DACAPO cohort of survivors of the acute respiratory distress syndrome (ARDS): a cohort profile

Abstract

Purpose: While most research focuses on the association between medical characteristics and residual morbidity of survivors of the acute respiratory distress syndrome (ARDS), little is known about the relation between potentially modifiable intensive care unit (ICU) features and the course of health-related quality of life (HRQoL). Accordingly, the DACAPO study was set up to elucidate the influence of quality of intensive care on HRQoL and return to work (RtW) in survivors of ARDS. The continued follow-up of these former ICU patients leads to the establishment of the DACAPO (survivor) cohort.

Participants: Sixty-one ICUs all over Germany recruited patients with ARDS between September 2014 and April 2016. Inclusion criteria were: (1) age older than 18 years and (2) ARDS diagnosis according to the 'Berlin definition'. No further inclusion or exclusion criteria were applied. 1225 patients with ARDS could be included in the DACAPO ICU sample. Subsequently, the 876 survivors at ICU discharge form the actual DACAPO cohort.

Findings to date: The recruitment of the participants of the DACAPO cohort and the baseline data collection has been completed. The care-related data of the DACAPO cohort reveal a high proportion of adverse events (in particular, hypoglycaemia and reintubation). However, evidence-based supportive measures were applied frequently.

Future plans: Three months, 6 months and 1 year after ICU admission a follow-up assessment is conducted. The instruments of the follow-up questionnaires comprise the domains: (A) HRQoL, (B) RtW, (C) general disability, (D) psychiatric symptoms and (E) social support. Additionally, an annual follow-up of the DACAPO cohort focusing on HRQoL, psychiatric symptoms and healthcare utilisation will be conducted. Furthermore, several add-on projects affecting medical issues are envisaged.

Trial registration number: NCT02637011.

Keywords: acute respiratory distress syndrome (ards); epidemiology; health-related quality of life; icu; return to work.

Figure 1

Patient flow of the DACAPO cohort. ICU, intensive care unit.

Figure 2

Main objectives and add-on projects using data of the DACAPO ICU sample/DACAPO cohort. (I) Main objective of the DACAPO study; (II) main objective of the DACAPO cohort; (III) genetic add-on project; and (IV) add-on projects with clinical background. ^aAn additional DNA analysis for the participants of the DACAPO cohort is intended. ^bFor some of the research questions, a retrospective collection of medical data is required. ^cAn additional follow-up with specific measurement instruments is intended for some research questions. ARDS, acute respiratory distress syndrome; HRQoL, health-related quality of life; HCU, healthcare utilisation; ICU, intensive care unit; PTSD, post-traumatic stress disorder; QoC, quality of care; RtW, return to work.