RecruitingOBSERVATIONAL

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

This study is developing a new, easier way to understand the daily lives and well-being of adults living with short bowel syndrome. People with this condition often need special feeding support, which can affect their quality of life. While there are existing questionnaires to measure this, they can sometimes be long and complicated for everyday use in clinics. Researchers want to create a new tool that is quicker and simpler, but still effective, to help doctors regularly check how their patients are doing. This will help healthcare teams provide better, more tailored support, ensuring that patients' voices are heard and their experiences are understood more easily.

At a glance

Status

Recruiting

Sponsor

Hospices Civils de Lyon

Enrolment target

100

Start

15 Jan 2025

Estimated completion

01 Jan 2027

Short Bowel Syndrome

What is this study about?

Imagine you have a condition called short bowel syndrome, which means your body has trouble absorbing nutrients, and you might need special feeding, sometimes through a drip. This can really change your daily life and how you feel. Doctors and nurses want to make sure they understand how this condition affects your well-being, but the current ways of asking about it, like long questionnaires, can be a bit tricky and time-consuming to fill out regularly.

This study, called SBS DISK, is all about making that process better. Researchers want to create a brand new, easier-to-use tool to quickly check how short bowel syndrome impacts your quality of life. They believe that if they have a simpler way to ask these important questions, healthcare teams will be able to get a clearer picture of how you're feeling and how the condition affects your daily activities, more often.

The main idea is to create a new questionnaire that is just as good as the existing ones but is much quicker and user-friendly. By doing this, doctors can more easily keep track of how you're doing over time and make sure you're getting the best possible care and support for your specific needs. It's about making sure your voice is heard and your experiences are understood in a straightforward way.

Key takeaways

Aims to create a simpler questionnaire for Short Bowel Syndrome patients.
Will help doctors understand patient well-being more easily.
Compares a new tool with an existing, more complex one.
Only for adults over 18 who speak French.
Focuses on improving quality of life assessment.

Who may be eligible?

This study is looking for adults who are at least 18 years old and are living with short bowel syndrome. It's important that you can understand and speak French, as the questionnaires and information will be in French.

However, if you have any known problems with your memory, thinking, or understanding (what doctors call cognitive disorders), then unfortunately this study isn't suitable for you. This is because the study relies on you being able to clearly understand and answer questions about your experiences.

Both men and women are welcome to take part, as long as they meet the age and language requirements and do not have conditions that affect their ability to understand and participate.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Are you 18 years old or older?
Do you have Short Bowel Syndrome?
Can you read and speak French fluently?
Do you have any known memory or thinking problems (cognitive disorders)?

Answer every question to see your result.

What does participation involve?

The description provided does not give specific details about what taking part in this study would involve regarding visits, assessments, medication, follow-up, or total duration. However, based on the aim to create and compare a new quality of life tool, it is likely that participants would be asked to complete one or more questionnaires. This would probably involve filling out the existing, longer 'Short Bowel Syndrome Quality of Life (SBS QoL)' questionnaire, and then the new, shorter questionnaire that the researchers are developing. There might be some questions about your general health and how short bowel syndrome affects you. It's possible you would complete these questionnaires at a clinic visit or perhaps even from home. The duration of your involvement would depend on how many times they need you to complete the questionnaires, but it's generally expected to be a short-term commitment centered around filling out forms.

Potential risks and benefits

Taking part in this study is generally considered low-risk, as it primarily involves filling out questionnaires about your experiences. There might be a small amount of time and effort required to complete the forms, and you might find some questions about your quality of life to be personal. However, you are always free to skip any questions you don't wish to answer, and you can withdraw from the study at any time without giving a reason and without affecting your medical care. The potential benefit is that your input will directly help create a better, simpler tool for future patients with short bowel syndrome, making it easier for healthcare professionals to understand their needs and provide better care.

Locations (1)

Hôpital Lyon Sud - CHLS
Verified postcode
Pierre-Bénite, France· Recruiting

Common questions

What is 'Short Bowel Syndrome'?

It's a condition where your body can't absorb enough nutrients because part of your small or large intestine is missing or doesn't work properly.

What is 'quality of life'?

It's about how well you feel and function in your daily life, considering your physical health, mental well-being, and social activities.

Why is a new tool needed?

The current tools are often long and complex, making them hard to use regularly. This study aims to create a simpler, quicker tool for doctors.

Will I have to take new medicines?

No, this study is about questionnaires, not about testing new medications or treatments.

What does 'parenteral nutritional support' mean?

It refers to receiving essential nutrients directly into your bloodstream, often through a drip, instead of eating food.

How to find out more

Charlotte BERGOIN, Doctor

charlotte.bergoin@chu-lyon.fr +33 04.78.86.38.69 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.