Principal Investigator: Kimberley Chien - NewYork-Presbyterian Komansky Children's Hospital / Weill Cornell Medical Center

Purpose

The purpose of this study is to understand the current transition and transfer practices for patients with IBD, challenges and barriers providers face, and institutional support and resources available. It will also determine if current practices align with recommendations for transition of care. We hypothesize that transition care services continue to remain sub-optimal and that various barriers in implementing transition care services to adolescent and young adult IBD patients continue to exist.

Aims

Primary Aim:

• To characterize current practices surrounding transition and transfer to adult care programming in the United States for adolescents and young adults with Crohn's disease and ulcerative colitis.

Secondary Aims:

• To understand barriers faced by providers
• To determine adherence to guidelines/recommendations
• To assess the prevalence of institutional guidelines
  
  

Contact: [email protected]

Principal Investigator: Kathleen A Eustace, MPH, RDN, LD, CNSC - UT Southwestern / Children's Health

Purpose & Aims:

The purpose of this study is to explore malnutrition in the pediatric IBD outpatient population. This project will attempt to identify screening and referral protocols for nutrition risk patients. The absence of literature regarding screening practices drives this research. The specific aim is to describe screening practices within pediatric IBD programs including protocols and tools. Findings for screening practices such has barriers will provide foundational knowledge of the approaches used by a variety of programs which can be consolidated into real actionable recommendations.

Contact: [email protected] 

Purpose:

There is an urgent need to address mental health comorbidities in youth with Inflammatory Bowel Disease (IBD).

One prevalent and burdensome mental health comorbidity in IBD is Medical Traumatic Stress (MTS), which occurs in about a third of patients. MTS is defined as post traumatic stress symptoms resulting from stressful and potentially traumatic illness-related experiences such as unpredictable hospitalizations and invasive procedures. These symptoms can include a broad range of psychological responses such as flashbacks, nightmares, panic attacks, avoidance of medical visits, and more. It is suggested that MTS has a profound impact on health and quality of life in IBD and other populations. In IBD, MTS has been associated with increased healthcare utilization, worse symptoms and increased disease activity. Despite the knowledge that MTS is prevalent and impactful in youth with IBD, MTS interventions are not a routine part of clinical practice. Addressing this gap is a critical potential pathway to improve outcomes for youth with IBD.

Specific Aims:

Aim 1: Assess the association of patient characteristics with vulnerability to adverse health outcomes from MTS.

Aim 2: Understand barriers and facilitators to the implementation of MTS screening and referral for youth in pediatric IBD clinics.

Aim 3: Develop and pilot a package of implementation strategies for an MTS screening and referral intervention targeting youth in pediatric IBD clinics.

Contact: Addison Cuneo

Purpose: The purpose of this study is to assess how IBD influences contraceptive concerns for adolescent and young adult (AYA) women with IBD and to explore their preferences regarding contraceptive counseling in IBD clinics through interviews with AYA women with IBD and the parents of adolescent females with IBD

Study Period: October 2022 to June 2024

Contact: Erica Brenner

Recruitment Status: currently recruiting participants   

More information: External resources include: North Carolina Translational and Clinical Sciences Institute (NC TraCS) $2,000 Stakeholder Engagement Voucher, Patient Advisory Board (PAB), University of North Carolina (UNC) IBD care centers

Publication: Perspectives on Contraception, Pregnancy, and Reproductive Health Counseling from Young Women With Inflammatory Bowel Disease 

Primary Investigator:  Sabina Ali

Purpose: Social Determinants of Health (SDoH) has become an increasingly relevant and highlighted topic in healthcare, with the consensus among public health organizations being that SDoH are an important factor in health and impacting patient care. However, there has been limited guidance and recommendation into how to practically implement approaches to integrating SDoH screening into clinical care. For this reason we seek to directly evaluate the perceptions around SDoH screening among healthcare providers and investigate what key elements and barriers are common within SDoH screening practices.

Aims & Hypothesis: Our specific aims are to investigate the key steps and/or barriers involved in administering Social
Determinants of Health (SDoH) screening as well as assess differences in providers' perspective on SDoH screenings
and understand what factors may affect these perspectives. Certain factors, including knowledge and focus on Social Determinants of Health (SDoH), are more likely to result in having an established SDoH screening and being knowledgable about the screening process.

Study Period: January 2024

Recruitment Status: Currently recruiting participants 

Contact: [email protected] 

Primary Investigator: Jennie David, Ph.D. - Nationwide Children's Hospital

Purpose:

Pediatric patients with IBD are known to have higher rates of psychosocial concerns than peers without IBD, including body image complexities and disordered eating behaviors (Claytor et al., 2020; David et al., 2017; David et al.,2021). While there is emerging understanding of protective and risk factors amongst patients with IBD regarding their relationships with their bodies and food including negative weight-based interactions, there is not yet an understanding of how pediatric IBD medical providers perceive patients' weights and body sizes and if the weight stigma that has been identified in adults with IBD exists (Guo et al., 2020) in pediatrics. Future interventions to optimize psychosocial health and reduce body image and disordered eating risk in pediatric IBD may be limited in impact without exploring how, if at all, weight stigma beliefs amongst medical providers contributes to body image and disordered eating risk. Stated differently, there are likely provider-related variables that serve as protective or risk factors for pediatric IBD patients' body image and relationship with food. The foundational work to understand if weight stigma is present amongst pediatric IBD medical providers has not yet been completed. This work is critically needed for future studies to understand how weight stigma may impact patients' psychosocial health and care and to inform future patient, provider, and system levels interventions.

Aims:

1) Characterize weight stigma amongst pediatric IBD medical providers,

2) Explore potential differences in weight stigma by gender, weight status, and race

Funding Source: N/A

Study Period: Starting April 2023

Recruitment Status: Currently recruiting participants

Contact: [email protected]

Purpose: This current study aims to understand the lived experiences of key stakeholder groups (patients, parents, and providers) who have used this SDM tool. Given the exploratory and qualitative nature of this study, there are not primary hypotheses to be tested. The research team hopes that this study will provide insights of patients, parents, and providers into the impact, utility, and effectiveness of this tool for pediatric IBD patients considering surgery.

Study Period: January 2022-May 2022

Contact: Kelly Sandberg

Primary Outcome: The primary aim of this study is to obtain initial psychometric properties of a newly developed measure of perceived barriers towards transition and transfer. There is no currently available measure of transition/transfer barriers, as such this project is exploratory in nature. However, we do hypothesize that the transition barriers measure will be a valid and reliable measure of perceived barriers among youth with IBD and their caregiver.

Study Period: Beginning April 2022

Contact: Michele Maddux, PhD