Current Research Opportunities:
Examination of the perceived impact, utility, and effectiveness of a shared decision-making tool for surgery in pediatric Inflammatory Bowel Disease
The goal of this study is to understand the past experiences of patients, parents, and doctors who have used or viewed ICN’s "Should I have IBD Surgery?" shared decision-making tool (IBD Surgery Shared Decision-Making Toolkit - ImproveCareNow). The virtual patient tool was created to help families and patients identify their concerns, preferences and resources when considering IBD surgery. The tool provides doctors with suggestions on how to incorporate the tool into the patient’s plan of care. Using this tool gives patients and families the opportunity to involve their doctors and care teams in shared decision-making (SDM).
The research team hopes that this study will provide an understanding of the impact, usefulness, and effectiveness of this tool for providers and for pediatric IBD patients considering surgery.
Click here if you are a provider or advanced practice practitioner
Click here if you are a patient or parent
PI: Kelly Sandberg, MD, MSc
An Exploration of How Health Care Professionals Assess and Support Sleep and Fatigue in a Pediatric IBD Population: Health Care Professional Survey
Health Care Professional Survey
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.
This study hopes to understand 1) the current ways that health care professionals (HCPs) are talking about and helping with fatigue and sleep in pediatric IBD, and 2) the self-reported experience of fatigue and sleep in pediatric patients with IBD.
Health care professionals (including GIs, APN/NP/PAs, nurses, psychologists, social workers, and dietitians) who care for pediatric IBD patients are eligible to participate. Participants can complete a one-time secure, online survey that is estimated to take 10-20 minutes long to complete. There is no follow-up to this study.
Health care professionals can learn more and complete the survey by clicking the blue link below:
Complete Survey
An Exploration of How Health Care Professionals Assess and Support Sleep and Fatigue in a Pediatric IBD Population: Patient Survey
Pediatric IBD Patient Survey
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.
This study hopes to understand 1) the current ways that health care professionals (HCPs) are talking about and helping with fatigue and sleep in pediatric IBD, and 2) the self-reported experience of fatigue and sleep in pediatric patients with IBD.
Patients who have been diagnosed with IBD and are between 8 to 17 years old can participate. Participants can complete a one-time secure, online survey that is estimated to take 10-20 minutes to finish. There is no follow-up to this study.
Patients can learn more and complete the survey by clicking the blue link below:
Complete Survey
