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]

Primary Investigator:  Nicole Davidson - Nationwide Children's Hospital

Purpose:

Inflammatory bowel disease (IBD) is a chronic immune mediated condition that impacts not only the physical health of patients but also their psychosocial wellbeing and quality of life. Multidisciplinary care is advised in the care of children and adolescents with IBD. Models of multidisciplinary care for pediatric IBD have been described in the literature but real-world access to multidisciplinary care as well as provider attitudes and perceived barriers and facilitators to it remain largely unknown. Michel et al described the described the approach to the pediatric IBD medical home at our IBD center (Nationwide Children's Hospital) in a study published in 2022 (Michel et al. 2022).

Our center has access to several resources given the size and scope of our institution but we recognize that these resources are not available at all centers. In a survey study by Winnick et al, ICN centers were surveyed to assess their access to psychosocial support services for IBD patients. The study found that the majority of centers had access to psychosocial support, however most of these providers were not dedicated exclusively to IBD and they were often only available during limited hours (Winnick et al. 2023). This study would be helpful to assess what common barriers in access to this type of care across ICN centers in the US, while acknowledging that ICN centers do not encompass all centers providing pediatric IBD care. Analyzing this data will allow pediatric IBD centers to assess care gaps and advocate for improved care.

Aims & Hypothesis: This study aims to understand availability and access to multidisciplinary care for children with IBD across US ICN centers. It also aims to explore provider attitudes, barriers, and facilitators of care. We hypothesize that access to multidisciplinary care will vary widely across US ICN centers. Providers will feel positively toward multidisciplinary care for children with IBD, but identify multiple personnel, local, and system-level barriers to care access and delivery.

Funding Source: N/A

Study Period: January 2024

Recruitment Status: Currently recruiting participants 

Contact: [email protected] 

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

Specific Aims:

1. To examine the relationship between positive psychological resources (i.e., mindfulness, self-compassion, acceptance) and perceived stress, mood, disease activity, and quality of life in a sample of adolescents with IBD.

Start Date: August 2017

Contact: Anava Wren

Purpose: The purpose of this study is to evaluate the perspectives of pediatric and adult gastroenterologists on the clinical utility and feasibility of the Pediatric IBD Medical Transfer Summary (PIBD-MTS) tool, which is aimed to synopsize the salient aspects of a young adult's prior pediatric medical course, as a tool to be shared with the receiving adult provider in the transfer of care process.

Specific Aims:

The ICN Transition and Transfer Committee developed the PIBD-MTS as a collaboration amongst pediatric and gastroenterologists, psychologists, young adults of PAC, and parents of PWG. The summary has undergone multiple revisions, including adaption for electronic medical records. Feedback from both pediatric and adult gastroenterologists has been largely qualitative, with infrequent patient-specific feedback.

• We will assess pediatric provider satisfaction with the PIBD-MTS, including time spent for completion and content
• We will assess adult provider satisfaction with the PIBD-MTS, including time spent reviewing information, completeness, and quality of information related to IBD care.

Study Period: March 2021-March 2023

Contact: Jeanne Tung

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

Purpose: The purpose of this study is to understand the current ways that healthcare professionals (HCPs) are assessing and intervening related to fatigue in pediatric IBD, and understand the current self-reported experience of fatigue in pediatric patients in clinical remission and those with active disease.

Specific Aims:

1. Identify the perception of prevalence of fatigue HCPs have regarding pediatric IBD patents
2. Identify the way(s) in which HCPs assess for fatigue in pediatric IBD patients
3. Identify the way(s) in which HCPs intervene related to fatigue in pediatric IBD patients
4. Identify potential reported differences between HCPs in assessing and intervening related to fatigue in pediatric IBD (e.g., are there descriptive differences between how a pediatric GI and a pediatric psychologist assess and intervene?)
5. Identify the self-reported fatigue of patients in clinical remission and patients with active disease

Study Period: January 2022-October 2022

Contact: Sabina Ali

Overall Study Question: What is the experience of patients with inflammatory bowel diseases (IBD) following a switch of infusion sites?

Specific Aims: We aim to evaluate the experience of patients with Inflammatory Bowel Diseases (IBD) following their transfer of care from one infusion site to another. Based on IBD patients’ experience, we will assess the need for intervention to improve transfer of infusion sites. 

Study Period: Beginning in April 2022

Contact: Sirine Belaid

Overall Study Question: How does the family and patient engagement process impact which advocates become centrally involved in the Collaborative Learning Health Systems operations?

Specific Aims: We will use qualitative interviewing methods to understand the experiences and practices of different groups involved in the patient engagement process within Collaborative Learning Health Systems. We have developed interview guides for each stakeholder group (patients/parents, healthcare providers, and engagement teams). These interview guides ask a range of questions to understand organizational processes, personal experiences, and professional experiences in order to elicit mechanisms of patient engagement and barriers and facilitators in patient engagement processes.

Study Period: Beginning in April 2022

Contact: Becky Woolf