LOOP Blog

Why was this study done?

The purpose of this study was to understand the availability of psychosocial services across ImproveCareNow.

There have been calls by ImproveCareNow, medical providers, and young persons living with Inflammatory Bowel Disease and their families for increased access to psychosocial services. Psychosocial services are provided by social workers and psychologists with specialized training and skills to support the unique needs of young people living with Inflammatory Bowel Disease and their families. For example, psychosocial providers can teach coping skills to manage and navigate through everyday stressors that accompany living with Inflammatory Bowel Disease (for example, learning how to swallow pills, or screen for symptoms of depression or anxiety), provide coaching for techniques to tolerate symptom flares during treatment (for example, learning relaxation strategies), and help young people prepare for medical procedures (for example, create a coping plan before scopes). Psychosocial providers can also connect patients and families with important resources in the community and support young persons in gaining more independence in their care as they transition into adulthood (for example, learning how to speak up in a doctor’s visit). Understanding the availability of these psychosocial services helps us know how the psychosocial needs are being met for our young persons living with Inflammatory Bowel Disease and their families.

ImproveCareNow brings together many different people in a diversity of roles across the spectrum of pediatric IBD care. Everyone contributes to our shared mission to transform the health, care and costs for all children and adolescents with Crohn’s disease and ulcerative colitis (Inflammatory Bowel Disease or IBD) by building a sustainable collaborative chronic care network.

Today, we're highlighting the ICN Social Workers & Psychologists (SWAP) group, which brings together psychosocial professionals (including social workers and psychologists) across the network to ask & answer questions, learn from & support each other, share best practices & resources, and work together to continuously improve awareness of & access to psychosocial whole-person care for pediatric IBD patients and families.

We are excited to be hosting our Fall 2023 Community Conference in Louisville, KY from October 25 to October 27. We look forward to engaging with healthcare providers, patients, parents/caregivers, researchers and improvers from across ImproveCareNow to all teach and all learn about our ongoing pediatric IBD research and improvement efforts. Download our draft agenda to preview the full conference schedule ⬇⬇

I sit staring at what feels like a mountain of pills, my pillbox barely shutting. I just wish I could be a normal college kid. Taking daily medications sounds so simple and easy, but it’s often one of my biggest challenges. Trying to keep up with medications and even appointments gets very exhausting, especially since I’ve had to do these things from a very young age. I know nothing more than a life filled with pills and appointments. 

For all children and teens, bone health is important. The amount of bone tissue in the body is known as bone mass. It keeps growing throughout puberty. By age 20, bones have reached their maximum strength. Ninety percent of bone growth happens before age 20.

Children and teens with IBD may be at risk for low bone density (LBD). Low bone density makes bones weaker. Patients with height delay and patients with low BMI (body mass index) may be at higher risk. Long-term use of corticosteroids is also a risk factor for LBD. Malabsorption of nutrients and active disease contribute to the risk of LBD. Low bone density may lead to osteoporosis and fractures. Osteoporosis is a disease that weakens bones and can lead to bones becoming thinner and less dense.

Bone density and improving bone health is something to talk to your IBD care team about. Here are some things to consider:

Why was this study done?

Pediatric patients with inflammatory bowel disease (IBD), including Crohn’s Disease and ulcerative colitis, who take biologic medications (like infliximab and adalimumab) have decreased hospitalizations, surgery rates, and improved quality of life. However, biologic medicines are expensive. Biosimilars are similar biological therapies that are just as safe and effective as the original biologic medication, although they are often less expensive. There are currently two medications (infliximab/Remicade and adalimumab/Humira) used to treat IBD that have biosimilars available. Despite the cost savings, the utilization of biosimilars in the treatment of IBD has been low. The exact reasons why the utilization of biosimilars is low is not well known or well-studied.

The objective of this study was to evaluate pediatric gastroenterologists’ perspectives of biosimilars and to evaluate factors that impact pediatric gastroenterologists’ comfort level with prescribing biosimilars.

This spring, Teresa (a self-proclaimed dataphile) led a breakout session at our Live Online Community Conference where she and Dr. Howard Baron (ICN physician leader) talked openly about data entry failure at their center with the hope that others could learn from their experience.

Hi, my name is Justin, and I was diagnosed with Crohn's disease in 2021. I am on Remicade. I am currently a rising junior in high school, and my interests are in law.

My name is Maria and I'm the ImproveCareNow Parent/Family Advisory Council (PFAC) Connections Co-Lead. Recently, I had the pleasure of collaborating with the ICN Communications team and PFAC leadership, to create the very first logo for the PFAC! Our new PFAC logo symbolizes the incredible strength and unwavering unity of parents and caregivers who nurture and support children with IBD.