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.
Em resumo
Sobre o que é este estudo?
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.
Pontos principais
- 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.
Quem pode ser elegível?
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.
Este estudo pode ser adequado para você?
Responda a estas perguntas rápidas para ver se você pode ser elegível. Este é apenas um guia — a decisão final é da equipe de pesquisa.
- 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)?
O que envolve a participação?
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.
Riscos e benefícios potenciais
Locais (7)
- University of Alabama Birmingham HospitalCódigo postal verificadoBirmingham, Estados Unidos· Recrutamento
- Children's Hospital of New Orleans/ Tulane UniversityCódigo postal verificadoNova Orleans, Estados Unidos· Recrutamento
- Helen Devos Children's HospitalCódigo postal verificadoGrand Rapids, United States· Recrutamento
- Montefiore Medical CenterCódigo postal verificadoThe Bronx, United States· Recrutamento
- Cincinnati Children's Hospital Medical CenterCódigo postal verificadoCincinnati, Estados Unidos· Recrutamento
- Seattle Children's HospitalCódigo postal verificadoSeattle, Estados Unidos· Recrutamento
- The Hospital for Sick ChildrenCódigo postal verificadoToronto, Canadá· Recrutamento
Perguntas frequentes
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.
Quem pode participar deste estudo?
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.
Como saber mais
Jocelyn S Zuckerman, BA
Sempre consulte seu médico ou especialista antes de decidir participar de um estudo.
Interessado em participar?
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