ImproveCareNow Research Committee member and pediatric IBD psychologist, Jennie David PhD, recently shared her answers to some questions about the state of IBD research, emerging trends in ICN Research, significant recent discoveries, and the value of being involved for psychosocial professionals.

Pediatric inflammatory bowel disease (IBD) is a chronic illness with various treatments, including ostomy surgery. Ostomy‐related medical decision‐making (MDM) is complex for multidisciplinary healthcare professionals (HCPs). This study sought to understand national multidisciplinary HCPs' perceptions about pediatric IBD ostomy surgery in the United States.

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.

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.

We are excited to welcome back former PAC co-chair, Dr. Jennie David (now a licensed pediatric IBD psychologist) as a host for this episode of imPACt. During episode 32 we talk about whole person care in IBD and get to ask a psychologist, social worker, and medical provider (nurse practitioner) how they came to work in pediatric IBD and how they learned about the mental health components of IBD.

Join me (Autumn), Henry & Samantha for a conversation about medical trauma in IBD with ICN SWAP (Social Workers & Psychologists) group members Dr. Jennie David (licensed clinical pediatric IBD psychologist) and Dr. Alexandra Fuss. We are honored to have them join us to discuss this important topic.

Pediatric patients with IBD can have challenges with fatigue (feeling tired a lot of the time) and difficulties with sleep. While fatigue and sleep are known to be important factors in supporting optimal psychosocial and medical outcomes in pediatric IBD, it is unknown how these topics are talked about in IBD care with patients.

A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.

LOOP is an important venue for our community to keep #TalkingAboutIBD. It’s a place where #StoriesMatter - where they connect us, grow our confidence, validate our experiences, remind us we are not alone, and motivate us to continue improving together.

So far, in 2021, 70 stories have been shared #InTheLOOP. Patients, clinicians, parents, dietitians, researchers, and staff & leaders from across the ICN Community have written about IBD from their unique perspectives. They have covered topics ranging from support and advocacy to the importance of sharing openly and talking about IBD, from research and innovative projects to personal struggles, triumphs and hopes for the future.

Without further ado, here are the stories you read the most in 2021!