RecruitingNAINTERVENTIONAL

Transforming Care for Individuals With Childhood-onset Systemic Lupus Erythematosus

This study is exploring a new way to help young people, aged 12 to 22, who have a type of lupus that started in childhood. It's called the TEACH program (Treatment and Education Approach for Childhood-onset Lupus). This program aims to teach useful coping skills to manage common challenges like extreme tiredness, pain, and low mood, which can really affect quality of life for those with lupus. Researchers want to see if adding TEACH to regular medical care can make a real difference in how young people with lupus feel and function. The goal is to make these helpful skills available to more people through their usual doctors.

At a glance

Status

Recruiting

Phase

Sponsor

Michigan State University

Enrolment target

175

Start

12 Sep 2024

Estimated completion

30 Sep 2027

Systemic Lupus Erythematosus of Childhood (Disorder)

What is this study about?

This study is about making life better for young people (aged 12 to 22) who have a condition called childhood-onset lupus. Lupus is a long-term illness where the body's immune system mistakenly attacks its own healthy tissues. When it starts in childhood, it can be quite serious and affects many parts of the body. Young people with lupus often struggle with feeling very tired, experiencing pain, and sometimes feeling sad or down. These challenges can make daily life difficult.

Researchers have developed a special program called TEACH – which stands for Treatment and Education Approach for Childhood-onset Lupus. This program teaches practical skills to help young people cope better with these symptoms. It uses methods like cognitive behavioural therapy (CBT), which helps people change how they think and act about their challenges. Previous studies have shown that TEACH is promising in helping young people feel better and improve how they manage their condition. Currently, this program isn't routinely available at doctors' offices, and this study aims to change that.

The main goal of this study is to see how well the TEACH program works when it's offered as part of a young person's regular medical care for lupus. The researchers want to find out if it can really improve their emotional well-being, their overall ability to do daily activities, and even how their lupus affects them. They also want to understand how feelings of sadness might change over time for those who take part. Ultimately, they hope to integrate this helpful program more widely into healthcare for young people with childhood lupus.

Key takeaways

This study aims to help young people with childhood lupus manage their symptoms better.
It tests a program called TEACH, which teaches coping skills for fatigue, pain, and low mood.
The program uses methods similar to cognitive behavioral therapy (CBT).
It hopes to make these helpful skills part of regular lupus care.
Participants can be 12-22 years old and have childhood-onset lupus.
Joining could help you and future young people with lupus.

Who may be eligible?

To join this study, you need to be a young person between 12 and 22 years old and have been diagnosed with childhood-onset lupus by age 18. This study is looking for participants who are experiencing some specific challenges linked to their lupus, such as significant tiredness, feelings of sadness or low mood, or ongoing pain. These are common symptoms that the TEACH program aims to help with. You also need to be able to speak English to take part. If you are under 18 (in the US) or under 16 (in Canada), a parent or guardian will need to give their permission for you to join.

However, there are some reasons why you might not be able to join. For example, if you have other long-term medical conditions like a different type of arthritis. You also wouldn't be able to participate if you have a documented learning difficulty, severe memory problems, or a thought disorder. The study also cannot include individuals with major untreated mental health conditions like severe depression, bipolar disorder, or psychosis, or if you are currently having thoughts of harming yourself.

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 between 12 and 22 years old?
Were you diagnosed with lupus before your 18th birthday?
Do you experience significant tiredness, pain, or feel down often?
Can you speak English fluently?
Do you have a parent/guardian who can give permission if you are under 18 (US) or 16 (Canada)?

Answer every question to see your result.

What does participation involve?

The study involves taking part in the TEACH program, which usually consists of six sessions. These sessions can be done either in person or remotely, meaning you might do them online from your home. The aim is to help you learn new skills to manage your lupus symptoms. Throughout the study, you'll also have assessments to check how you're feeling and how your lupus is affecting you.

Potential risks and benefits

Taking part in this study could offer several potential benefits, such as learning new coping skills to manage tiredness, pain, and low mood, which might improve your overall quality of life. You'll also be contributing to important research that could help many other young people with lupus in the future. As with any study, there might be some minor risks, such as the time commitment required or discussing sensitive topics, which could cause temporary discomfort. However, your well-being is a priority, and you are free to stop participating at any time without affecting your medical care.

Locations (7)

University of Alabama Birmingham Hospital
Verified postcode
Birmingham, United States· Recruiting
Children's Hospital of New Orleans/ Tulane University
Verified postcode
New Orleans, United States· Recruiting
Helen Devos Children's Hospital
Verified postcode
Grand Rapids, United States· Recruiting
Montefiore Medical Center
Verified postcode
The Bronx, United States· Recruiting
Cincinnati Children's Hospital Medical Center
Verified postcode
Cincinnati, United States· Recruiting
Seattle Children's Hospital
Verified postcode
Seattle, United States· Recruiting
The Hospital for Sick Children
Verified postcode
Toronto, Canada· Recruiting

Common questions

What is childhood-onset lupus?

It's a long-term illness where your immune system mistakenly attacks healthy tissues, and it starts when you're young.

What is the TEACH program?

It's a special program designed to teach young people with lupus coping skills for tiredness, pain, and low mood.

Who can join this study?

Young people aged 12-22 with childhood lupus who struggle with tiredness, pain, or feeling down, and can speak English.

Will I have to stop my current lupus treatment?

No, this program is designed to work alongside your regular medical care, not replace it.

How long does the TEACH program take?

The program typically involves six sessions.

How to find out more

Jocelyn S Zuckerman, BA

zucker32@msu.edu 9785051866 Official trial record

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