SBS DISK- Creation of a Quality of Life Tool for Short Bowel Patients Compared With a Validated Quality of Life Questionnaire (SBS QoL) (SBS DISK)

Patients with short bowel syndrome have an impact on their quality of life because they need temporary or permanent parenteral nutritional support. The quality of life of these patients has been the subject of several studies and assessment tools exist, such as the Short Bowel Syndrome Quality of Life (SBS QoL). This tool may seem complex and tedious to use in everyday practice. However, it is important to regularly assess the quality of life of these patients. This is why the investigators are proposing to create a new tool for more rapid assessment of the quality of life of patients with short bowel syndrome.

Study Overview

• Status: Recruiting
• Conditions: Short Bowel Syndrome

• Study Type: Observational
• Enrollment (Estimated): 100

Contacts and Locations

• Study Contact: Name: Charlotte BERGOIN, Doctor; Phone Number: +33 04.78.86.38.69; Email: charlotte.bergoin@chu-lyon.fr
• Study Contact Backup: Name: Stéphanie PECORA, Dietician; Phone Number: +33 04.78.86.8.69; Email: stephanie.pecora@chu-lyon.fr

Study Locations

• France
  • Pierre-Bénite, France, 69495
    • Recruiting
    • Hôpital Lyon Sud - CHLS
    • Contact: Charlotte BERGOIN, Doctor; Phone Number: +33 04.78.86.38.69; Email: charlotte.bergoin@chu-lyon.fr
    • Contact: Stéphanie PECORA, Dietitian; Phone Number: +33 04.78.86.38.69; Email: stephanie.pecora@chu-lyon.fr
    • Principal Investigator: Charlotte BERGOIN, Doctor

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Non-Probability Sample

Study Population

The study will focus on adult patients with short bowel syndrome followed up in the GHS Intensive Clinical Nutrition Department, during a consultation, a day hospital or a conventional hospital stay.

Description

Inclusion Criteria:

• Age 18 or over
• Patient able to read and speak French
• Patient suffering from short bowel syndrome

Exclusion Criteria:

• Known cognitive disorders

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort
Questionnaire completion; The partient completes the two quality of life assessment questionnaires (Short Bowel Syndrome Quality of Life (SBS QoL) and SBS disk assessment tool), in paper format.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Validation of a new quality of life tool, the SBS disk, in comparison with a quality of life assessment tool, the SBS QoL.	Self-questionnaire in the form of a disk which covers 10 themes: Energy, stress level, anxiety, diet, abdominal pain, transit, appliances, social life, social and professional activity, sleep, as well as self-image and intimate life, according to the recommendations of the WHO quality of life assessment. These themes are the same as those generally covered by the SBS QoL reference questionnaire, with the exception of self-image and intimacy. The themes are evaluated according to the patient's feelings during the past week on a scale from 0 to 10.	Day 1

Collaborators and Investigators

• Sponsor: Hospices Civils de Lyon
• Investigators: Principal Investigator: Charlotte BERGOIN, Doctor, Service d'hépato-gastro-entérologie et Assistance nutritionnelle - Hôpital Lyon Sud - CHLS

Study record dates

Study Major Dates

• Study Start (Actual): January 15, 2025
• Primary Completion (Estimated): January 1, 2027
• Study Completion (Estimated): January 1, 2027

Study Registration Dates

• First Submitted: January 7, 2025
• First Submitted That Met QC Criteria: January 7, 2025
• First Posted (Actual): January 13, 2025

Study Record Updates

• Last Update Posted (Actual): February 12, 2026
• Last Update Submitted That Met QC Criteria: February 11, 2026
• Last Verified: February 1, 2026

More Information

Terms related to this study

• Keywords: Quality of life; Short Bowel syndrome
• Additional Relevant MeSH Terms: Postoperative Complications; Pathologic Processes; Intestinal Diseases; Digestive System Diseases; Gastrointestinal Diseases; Malabsorption Syndromes; Pathological Conditions, Signs and Symptoms; Short Bowel Syndrome
• Other Study ID Numbers: 69HCL24_0889; 2024-A02032-45 (Other Identifier: ID-RCB)

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No
• product manufactured in and exported from the U.S.: No