Sebastian Blecha

Determinants of quality of life and return to work following acute respiratory distress syndrome — a systematic review

BACKGROUND Acute respiratory distress syndrome (ARDS) in adults is a consequence of lung damage caused by either pulmonary or extrapulmonary disease. Survivors often suffer from an impaired health-related quality of life (HRQoL), mental and physical impairments, and persistent inability to work. METHODS In this systematic review of the literature, we consider the determinants of HRQoL and return to work (RtW). 24 observational studies showing a statistical association between one or more determinants and HRQoL or RtW were included. Because of the heterogeneity of these studies, no statistical aggregation of the individual effect estimates was carried out; instead, the results are summarized descriptively. RESULTS Psychopathological manifestations, in particular, are associated with impaired quality of life. In contrast, many care- and disease-related determinants had only small, non-significant effects on HRQoL and RtW. The onesecond capacity was found in all studies to be positively associated with the HRQoL. ARDS induced by sepsis seems to be a risk factor for a lower HRQoL in comparison to ARDS of other causes. A synthesis of the evidence is impeded both by the high level of heterogeneity of studies and by the high risk of selection bias in all studies. CONCLUSION The identification of determinants of impaired quality of life after ARDS is essential for the assessment of clinically relevant interventions. In multiple studies, major significant effects were only observed when determinants the content of which was closely related to the scales of the HRQoL instruments were measured at the same time as the HRQoL.

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

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.

Acceptability of a German multicentre healthcare research study: a survey of research personnels’ attitudes, experiences and work load

Objectives The DACAPO study as a multicentre nationwide observational healthcare research study investigates the influence of quality of care on the quality of life in patients with acute respiratory distress syndrome. The aim of this study was to investigate the acceptability to the participating research personnels by assessing attitudes, experiences and workload associated with the conduct of the DACAPO study. Design, setting and participants A prospective anonymous online survey was sent via email account to 169 participants in 65 study centres. The questionnaire included six different domains: (1) training for performing the study; (2) obtaining informed consent; (3) data collection; (4) data entry using the online documentation system; (5) opinion towards the study and (6) personal data. Descriptive data analysis was carried out. Results A total of 78 participants took part (46%) in the survey, 75 questionnaires (44%) could be evaluated. 51% were senior medical specialists. 95% considered the time frame of the training as appropriate and the presentation was rated by 93% as good or very good. Time effort for obtaining consent, data collection and entry was considered by 41% as a burden. Support from the coordinating study centre was rated as good or very good by more than 90% of respondents. While the DACAPO study was seen as scientifically relevant by 81%, only 45% considered the study results valuable for improving patient care significantly. Conclusion Collecting feedback on the acceptability of a large multicentre healthcare research study provided important insights. Recruitment and data acquisition was mainly performed by physicians and often regarded as additional time burden in clinical practice. Reducing the amount of data collection and simplifying data entry could facilitate the conduct of healthcare research studies and could improve motivation of researchers in intensive care medicine. Trial registration number NCT02637011; Pre-results.