Sleep, Pain, Anxiety, Depression, and Fatigue in Pediatric IBD

Symptoms including Sleep, Pain, Anxiety, Depression, and low Energy/fatigue, also known as the SPADE pentad, can be debilitating for people living with IBD. Research with adults with IBD has found that SPADE symptoms can be particularly distressing and disruptive, even for patients in disease remission. SPADE symptoms are believed to be multidimensional, complex, and multifactorial in nature, suggesting a number of interacting clinical, demographic, and psychosocial characteristics contribute to symptom severity. However, we have yet to explore the relationships among these symptoms in the pediatric population living with IBD.

A new research study seeks to explore SPADE symptoms in teens with IBD.

The Experiences of Teens Living with IBD Study

We are conducting an ongoing research study in collaboration with ImproveCareNow, Indiana University School of Medicine, and Indiana University School of Nursing.

In this study, we will examine the relationships among SPADE symptoms. We will evaluate the associations between symptoms and demographic, clinical, and self-management variables in teens with inflammatory bowel disease. Data will be collected at baseline and at 6 months post-baseline.

While this study only seeks to describe and explore these symptoms, the results will provide important insight into what factors are involved in the experience and severity of SPADE symptoms in teens with IBD. Study results will serve as the groundwork for future experimental studies that will lead to the development of evidence-based tools to support symptom management in this population.

Join the Study!

We are actively recruiting for this compensated research study. We are 90% there with recruitment and looking for our final participants to help us reach our recruitment goal! If you are a parent of a teenager (13-17 years old) living with Crohn’s disease or ulcerative colitis, your teen may be able to take part in our study. The study involves taking two online surveys, with the first survey taking place immediately after joining the study and the second survey occurring 6 months later. Please follow the link below, which will take you to our study website. The website includes information about the research project and shows you how to join the study: https://clmalloy.wixsite.com/teens-with-ibd-study

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📌 The Experiences of Teens Living with IBD Study - this study is currently enrolling teenagers (13-17 years old) living with Crohn's disease or ulcerative colitis. Visit the site for information about the research project and how to join the study. 

⏰ It's time to get involved! No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers! Here are some ways to find & give help:

💚 Young patients (14+) with IBD can join the Patient Advisory Council 

💙 Caregivers of young people with IBD can join the Parent/Family Advisory Council

💚 Eligible individuals can participate in Current Research Opportunities

💙 Anyone can support ImproveCareNow with a tax-deductible general donation or donation to the Richard B. Colletti Family Fund

💚 Anyone can sign up for blog updates and stay #InTheLOOP with our IBD stories

💙 Anyone can download, use & share our free, co-produced IBD resources

💚 Anyone can connect with our welcoming & supportive community and receive IBD resources, community stories, and ICN updates & opportunities by joining our CIRCLE