Posted by Fionna Kopp on July 26, 2022
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.
A new research project aims to learn more about Sleep & Fatigue in Pediatric IBD.
Patient Perspectives on Fatigue, Sleep and IBD
Leading up to the Fall 2021 ImproveCareNow Live Online Community Conference, PAC Members Nour and Maha co-wrote a post sharing their experiences with fatigue. Fatigue, Sleep, and IBD - A Patient Perspective helped set the stage for a breakout session they co-lead to jumpstart the conversation about fatigue and IBD and build momentum for important new research into this common and complex side effect.
Fatigue is an incredibly complex topic, and knowing that so many IBD patients are struggling with it motivated us to study the various factors that play into fatigue and how these can be better addressed in clinical settings.
An Exploration of How Health Care Professionals Assess and Support Sleep and Fatigue in a Pediatric IBD Population
The study is underway. The ICN Research Committee has approved two one-time secure, online surveys - one for Health Care Professionals and one for Pediatric Patients with IBD - which eligible individuals can complete in order to take part in this research project. The study aims to:
- understand the current ways that health care professionals (HCPs) are talking about and helping with fatigue and sleep in pediatric IBD
- understand the self-reported experience of fatigue and sleep in pediatric patients with IBD
If you are a pediatric patient (age 8-17) diagnosed with IBD or a health care provider (including GIs, APN/NP/PAs, nurses, psychologists, social workers, and dietitians) caring for pediatric patients with IBD and you are interested in sharing your experience to help researchers learn more about fatigue in pediatric IBD, you can use the links below to learn more and access your survey:
💚 PATIENT SURVEY
💙 HEALTH CARE PROFESSIONAL SURVEY
Additional ICN Research Opportunities
Research is for everyone - if the Fatigue & IBD study isn't for you, here are some other actions you can take to get involved in ICN Research today:
- Patients who have switched infusion sites can help researchers by taking the Evaluation of the Experience of Patients with Inflammatory Bowel Diseases (IBD) with Switching of Infusion Locations survey
- Everyone can sign up to receive Research Updates in our quarterly research-focused eNewsletter
- Everyone can get #InTheLOOP with ICN Research Explained - a series of LOOP posts that are co-written by researchers and parents to help explain the results of ImproveCareNow research in an easily accessible format
Let's outsmart IBD together!
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Get #InTheLOOP with more posts about research on the ICN blog >>
Put in your time and energy on behalf of someone else. No effort is too small, because everything we do in ImproveCareNow is magnified by the efforts of thousands of other improvers, and together we bring about a better quality of life for many. Here are some actions you can take, or invite others to take:
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Invite someone to stay #InTheLOOP with IBD stories on the ICN blog - "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint
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Invite a patient (14+) to join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea
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Invite a parent or family member of a child with IBD to join the Parent/Family Advisory Council - "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria
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Invite someone to download free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
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Invite someone to Join Our CIRCLE - "Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa
