RecruitingNAINTERVENTIONAL

Adapting the FACETS Program to Sickle Cell Disease

This research is looking at a new version of a program called FACETS, specifically for adults living with sickle cell disease. FACETS is designed to help people manage their fatigue, which is a common and often challenging symptom of many conditions. The program brings together two main approaches: cognitive behavioural therapy, which helps people understand and change their thinking patterns, and energy conservation strategies, which teach practical ways to save energy throughout the day. The goal of this study is to adapt these helpful techniques to meet the specific needs of individuals with sickle cell disease, creating a tailored program called Drépa-FACETS. It aims to see if this adapted program can effectively help people with sickle cell disease feel less tired and improve their overall quality of life.

At a glance

Status

Recruiting

Phase

Sponsor

Versailles Hospital

Enrolment target

Start

10 Jan 2025

Estimated completion

02 May 2026

Fatigue Symptom Sickle Cell Disease

What is this study about?

Sickle cell disease can cause many symptoms, and one of the most common and difficult to live with is extreme tiredness, also known as fatigue. This fatigue isn't just regular tiredness; it can be very severe and make everyday tasks challenging, impacting someone's quality of life significantly.

This study is about adapting a special kind of program called FACETS, which has already been shown to help people manage fatigue from other long-term conditions. The FACETS program uses two main ideas: talking therapies (like cognitive behavioural therapy) to help you understand and change how you think about your fatigue, and practical tips on how to save your energy throughout the day. The researchers are creating a new version, called Drépa-FACETS, specifically for adults with sickle cell disease.

The main aim is to see if this specially designed Drépa-FACETS program can help people with sickle cell disease feel less tired and improve their daily lives. By adapting an existing successful program, the hope is to find a good way to support people dealing with fatigue caused by sickle cell disease.

Key takeaways

This study is for adults with sickle cell disease who experience fatigue.
It tests an adapted program (Drépa-FACETS) to help manage tiredness.
The program uses talking therapies and energy-saving techniques.
Understanding and speaking French is a must to participate.
It aims to improve daily life for those with sickle cell-related fatigue.

Who may be eligible?

To join this study, you must be an adult aged 18 or older. You also need to have sickle cell disease, no matter which specific type you have (like SS, SC, or Sbeta). It's important that you can understand and speak French well enough to take part in discussions, fill out questionnaires, and do any activities at home.

There are certain reasons why you might not be able to join. For example, if you have a severe mental health condition that could affect how you take part in the study, or if you have another ongoing health problem that is the main cause of your tiredness. You also can't take part if you are currently having a sickle cell crisis or are in hospital. Finally, you can't be under legal protection (like guardianship) or deprived of your liberty.

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 sickle cell disease (any type)?
Can you understand and speak French well?
Do you *not* currently have another major health condition causing your fatigue?
Are you *not* currently in a sickle cell crisis or in hospital?
Are you *not* under legal protection or deprived of liberty?

Answer every question to see your result.

What does participation involve?

The detailed involvement for this study isn't fully explained here, but generally, if you participate in a program like Drépa-FACETS, it would involve attending several sessions. These sessions typically include group discussions or individual meetings where you learn strategies for managing fatigue, such as techniques from cognitive behavioural therapy and energy-saving tips. You would likely be asked to complete questionnaires at the beginning, during, and at the end of the program to measure your fatigue levels and well-being. There would also be 'home exercises' or tasks to practice the learned strategies in your daily life. The total duration of your participation would depend on the length of the Drépa-FACETS program, but usually, similar programs run for several weeks.

Potential risks and benefits

Potential benefits of taking part include learning new strategies and tools to better manage your fatigue, which could improve your daily energy levels and overall quality of life. There are generally low risks associated with talking therapies and energy management programs, but it's possible some people might find discussing their fatigue challenging or that the program might not be effective for everyone. You have the right to withdraw from the study at any time without giving a reason, and this decision will not affect your usual medical care.

Locations (2)

CHU Grenoble Alpes
Verified postcode
Grenoble, France· Recruiting
Hospital Versailles
Verified postcode
Le Chesnay, France· Completed

Common questions

What is 'fatigue' in this study?

Fatigue here means ongoing, extreme tiredness that doesn't get better with rest and significantly impacts daily life due to your sickle cell disease.

What is the FACETS program?

FACETS is a program that teaches you how to manage fatigue using talking therapies (like CBT) and practical ways to save your energy.

Why is it called 'Drépa-FACETS'?

It's called Drépa-FACETS because it's a version of the FACETS program specifically adapted for people with sickle cell disease ('Drépa' is often used in French to refer to sickle cell disease).

Do I need to speak French to join?

Yes, you need to be able to understand and speak French well enough to participate in all parts of the study, including discussions and questionnaires.

What if I'm already seeing a therapist?

You might still be eligible, but if you have a severe mental health condition that could affect the study, you would not be able to participate. It's best to discuss this with the study team.

How to find out more

Michalina DANNOUNE

mdannoune@ght78sud.fr 0139638856 Official trial record

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