Today, patients express a very strong need to take into account the consequences of their disease and its treatments in their therapeutic follow-up. It is therefore essential to better understand the needs, expectations and values of patients with SBS in order to better understand the impact of the disease on their lives, and thus improve the conditions for medical, social, psychological and technical care. The clinical expertise of health professionals and meetings with patient associations demonstrate the major gap between the parameters taken into account by physician to evaluate the evolution of the SBS and the day-to-day experience of the disease perceived by the patient. The objective of the ARTEMIS-GC study is to develop and validate an instrument to measure the impact of SBS and its treatments on daily life from the perspective of patients.
Study Type
OBSERVATIONAL
Enrollment
250
Exploratory interviews to generate an interview guide
Semi-directive interviews to collect qualitative data that will be used for questionnaire item generation
Cotation of newly developed items pertinence on a 4 points likert scale.
Debriefing session for the newly developed items: final possibility to adjust the tool before validating the psychometric proprieties of the questionnaire.
Psychometric properties study
Beaujon Hospital
Paris, France
Scale calibration of the new developped questionnaire
Calibration measure
Time frame: about 30 minutes
Structure of the new developped questionnaire
Structure identification
Time frame: about 30 minutes
Convergence proprieties of the new developped questionnaire
Convergence evaluation
Time frame: about 30 minutes
Reproducibility of the new developped questionnaire
Test of reproducibility
Time frame: Up to 8 days
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