Influence of quality of care and individual patient characteristics on quality of life and return to work in survivors of the acute respiratory distress syndrome: protocol for a prospective, observational, multi-centre patient cohort study (DACAPO)

Abstract

BackgroundHealth-related quality of life (HRQoL) and return to work are important outcomes in critical care medicine, reaching beyond mortality. Little is known on factors predictive of HRQoL and return to work in critical illness, including the acute respiratory distress syndrome (ARDS), and no evidence exists on the role of quality of care (QoC) for outcomes in survivors of ARDS. It is the aim of the DACAPO study (“Surviving ARDS: the influence of QoC and individual patient characteristics on quality of life”) to investigate the role of QoC and individual patient characteristics on quality of life and return to work.Methods/DesignA prospective, observational, multi-centre patient cohort study will be performed in Germany, using hospitals from the “ARDS Network Germany” as the main recruiting centres. It is envisaged to recruit 2400 patients into the DACAPO study and to analyse a study population of 1500 survivors. They will be followed up until 12 months after discharge from hospital. QoC will be assessed as process quality, structural quality and volume at the institutional level. The main outcomes (HRQoL and return to work) will be assessed by self-report questionnaires. Further data collection includes general medical and ARDS-related characteristics of patients as well as sociodemographic and psycho-social parameters. Multilevel hierarchical modelling will be performed to analyse the effects of QoC and individual patient characteristics on outcomes, taking the cluster structure of the data into account.DiscussionBy obtaining comprehensive data at patient and hospital level using a prospective multi-centre design, the DACAPO-study is the first study investigating the influence of QoC on individual outcomes of ARDS survivors.

Ambulatory and stationary healthcare use in survivors of ARDS during the first year after discharge from ICU: findings from the DACAPO cohort

“…Overall, the median number of outpatient visits during the first year after discharge from ICU was 15, with a high variability between participants (IQR [8][9][10][11][12][13][14][15][16][17][18][19][20][21][22][23][24][25]. The median number of outpatient visits to a general practitioner was 7 (IQR 4-12), and the median number for visits to physicians from any other specialty was 8 (IQR [4][5][6][7][8][9][10][11][12][13][14].…”

“…This study analyzes data on healthcare utilization among patients after ARDS from the DACAPO study ("Surviving ARDS: the influence of quality of care and individual patient characteristics on health-related quality of life"), a multicenter patient cohort study whose primary aim was to investigate the influence of quality of care on healthrelated quality of life and return-to-work in survivors of ARDS. The study procedures, baseline characteristics and profile of the cohort are described in more detail elsewhere [13][14][15]. Briefly, patients with ARDS were included in the study during their stay in the ICU of a participating clinic in Germany.…”

Quality of inter-hospital transportation in 431 transport survivor patients suffering from acute respiratory distress syndrome referred to specialist centers

“…We observed the quality of IHT in patients with an ARDS in the context of a large Germany-wide prospective cohort study (DACOPO study [11], ClinicalTrials.gov Identifier: NCT02637011). Briefly, the DACAPO study investigates the influence of quality of care and individual patient characteristics on HRQoL and return to work in survivors of ARDS.…”

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

“… 1 2 For the assessment of long-term outcomes in patients surviving critical illness, prospective multicentre observational study designs are required. One example is the DACAPO study 3 which investigated the influence of quality of care and individual patient characteristics on HRQoL and return to work in survivors of the acute respiratory distress syndrome (ARDS). The conduct of multicentre observational studies is associated with a high workload of the researchers regarding recruitment, obtaining informed consent and capturing baseline and long-term follow-up data.…”