LOOP Blog

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.

Hello Everyone! My name is Palwasha and I was diagnosed with Crohn’s disease in 2020, at the age of 15. My diagnosis is one of the main reasons why I want to pursue a future in medicine as a Physician Associate, and be able to help with research and advancements for the IBD community, as there is so much room for growth.

Why was this study done?

Pediatric patients with IBD have a higher rate of psychosocial needs than young people without IBD, including anxiety, low mood, fatigue, and body image complexities. Multidisciplinary care, including psychosocial providers (psychologists, social workers), is considered the standard of care in pediatric IBD. However, there is limited research exploring how medical providers (e.g., physicians) think about and engage with psychosocial providers in pediatric IBD.