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

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

Overall Study Question: Does increased engagement in a learning health network result in increased production and sharing of patient-oriented resources?

Specific Aims:

Aim 1: Measure resource production across learning health networks. Quantify and characterize the number/type of patient-oriented resources shared within ImproveCareNow (ICN) and Cystic Fibrosis Learning Network (CFLN) including blog posts, toolkits, pre-visit planning, etc.
Aim 2: Determine the relationship between the number of contributors and owners in the network and the number and type of resources produced. Describe the relationship between the number of patient/family contributors/owners and the number/complexity of patient-oriented resources produced.
Aim 3: Explore network factors that influence the rate of resource production. Interview ICN and CFLN stakeholders and perform qualitative data analysis to identify the themes related to network engagement and resource production.

Study Period: April 2022-April 2023

Contact: Maureen Dunn, MD

Purpose: The purpose of this descriptive, correlational study is to examine how sleep disturbance, pain, anxiety, depression, and fatigue/low energy (SPADE) symptoms cluster in adolescents living with IBD. We will also examine whether demographic, clinical, and self-management variables are associated with symptom cluster membership.

Specific Aims:

Aim 1: Examine how SPADE (sleep disturbance, pain, anxiety, depression, and fatigue) symptoms cluster in
             adolescents with IBD.

Aim 2: Evaluate associations between symptom cluster membership and demographic, clinical, and self-
             management variables in adolescents with IBD. Data will be collected at baseline and at 6 months
             post-baseline.

Study Period: The timeline for this study is based on an anticipated start date of April 30, 2022.

Contact: Caeli Malloy