ImproveCareNow Cross-Sectional_Research

Transition Barriers Survey: Initial Validation


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

Patient and Family Engagement and Resource Production in Learning Health Networks


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

Symptom Clusters in Adolescents with Inflammatory Bowel Disease


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

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

Contact: Caeli Malloy

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