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| Name | Class |
|---|---|
| Beaujon Hospital | OTHER |
| Société Francophone Nutrition Clinique et Métabolisme | OTHER |
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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.
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| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Exploratory interviews | Other | Exploratory interviews to generate an interview guide | ||
| Semi-directive interviews | Other | Semi-directive interviews to collect qualitative data that will be used for questionnaire item generation | ||
| Delphi Process | Other | Cotation of newly developed items pertinence on a 4 points likert scale. | ||
| Think aloud interviews | Other | Debriefing session for the newly developed items: final possibility to adjust the tool before validating the psychometric proprieties of the questionnaire. | ||
| Psychometric validation | Other | Psychometric properties study |
| Measure | Description | Time Frame |
|---|---|---|
| Scale calibration of the new developped questionnaire | Calibration measure | about 30 minutes |
| Structure of the new developped questionnaire | Structure identification | about 30 minutes |
| Convergence proprieties of the new developped questionnaire | Convergence evaluation | about 30 minutes |
| Reproducibility of the new developped questionnaire | Test of reproducibility | Up to 8 days |
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Inclusion Criteria:
Exclusion Criteria:
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Patients over 18 years with SBS for more than 6 months and returned home for at least 3 months.
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Laetitia Ricci, PhD | Contact | 0033383852092 | l.ricci@chru-nancy.fr | |
| Francisca Joly, MD, PhD | Contact | francisca.joly@gmail.com |
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Beaujon Hospital | Paris | France |
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| ID | Term |
|---|---|
| D012778 | Short Bowel Syndrome |
| ID | Term |
|---|---|
| D008286 | Malabsorption Syndromes |
| D007410 | Intestinal Diseases |
| D005767 | Gastrointestinal Diseases |
| D004066 | Digestive System Diseases |
| D011183 | Postoperative Complications |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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