Quantifying the recollection of discomfort and emotional suffering during a stay in intensive care: development and validation of the EXPRIM questionnaire

Abstract Background Discomfort perceived by patients during an intensive care unit (ICU) stay may limit their function, well-being, and quality of life after their stay. This study creates a comprehensive questionnaire (EXPRIM) able to distinguish and quantify the recollection of discomfort and emotional suffering experienced during a stay in an ICU stay, and to assess its performance. Method The measurement properties of the questionnaire were tested in a first sample of 50 patients recruited between February and July 2024 in a tertiary ICU, using internal consistency, test-retest reliability, standard error of measurement (SEM), and construct validity. Content validity was also tested, in a second sample of 20 patients and 10 ICU healthcare providers recruited between April and June 2024 in a regional ICU, using face-to-face qualitative interviews based on a semi-structured interview guide assessing comprehensibility, relevance and comprehensiveness of the instruction and items. Results EXPRIM is a 30-item questionnaire developed in French and translated in English. Its total score ranges from 0 to 10, reflecting the weighting of discomfort versus suffering. The internal consistency was very good (Cronbach’s alpha coefficient 0.81). The intra- and inter-examinator reliabilities were excellent (Intraclass Coefficient Correlation = 0.875 and 0.858, respectively). SEM ranged from −0.071 to 0.035. Good correlations were found between EXPRIM and other questionnaires measuring similar concepts. There was good evidence of content validity to explore recollection of the ICU stay. Conclusions The EXPRIM questionnaire is a new tool with excellent psychometric properties to quantitatively assess the ICU experiences survivors recall after discharge. It is a promising tool to explore the extent of discomfort and emotional suffering during an ICU stay and to compare experiences between patients or populations.