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Results
Below are abstracts published by IBD Partners Kids & Teens researchers.
IBD Partners Kids & Teens Abstracts
IBD Partners Kids & Teens Manuscripts
IBD Partners Kids & Teens Abstracts
  • Body Image Dissatisfaction in Pediatric Patients with Inflammatory Bowel Diseases Presentation Date: January 12, 2018
    Children and teenagers with Inflammatory Bowel Disease (IBD) are at increased risk of being unhappy with their body image. This study aimed to learn more about how common body image dissatisfaction (or "BID") is among these children and teenagers and to see if we could point to any risk factors for having BID. A total of 664 participants in the IBD Partners Kids & Teens study, ages 9-18, completed an online survey about anxiety, depression, disease activity, and quality of life. We found that about 3% of participants met the criteria for having BID by selecting the answer choices "I look awful" or "I look bad" when asked about their appearance. Young patients with BID tended to have worse disease, to be taking steroids, to be female, and to be diagnosed at an older age. These participants were also much more anxious and depressed than those who were satisfied with their appearance. Pediatric patients with BID should discuss these concerns with their physicians and healthcare teams.
    Scientific Abstract

  • Development and validation of a new domain structure for the IMPACT-III Health Reported Quality of Life (HRQOL) tool for pediatric patients with Inflammatory Bowel Disease (IBD). Presentation Date: December 12, 2015
    The inflammatory bowel diseases (IBD), Crohn's disease (CD) and ulcerative colitis (UC) are chronic bowel conditions with symptoms that often bounce back and forth between remission and active disease throughout an individual's life. Although diagnosed in both adults and youth, IBD presents unique challenges to kids and youth in terms of managing the disease with significant physical, social, and emotional effects. The IMPACT questionnaire was developed to measure health related quality of life (HRQOL) in pediatric IBD patients. This questionnaire measures the impact of disease, and the psychological burden of IBD on an individual's functioning. However, HRQOL is not ideally captured through a single question or concept, rather there are different aspects of one's life IBD affects, and that are covered by a questionnaire like IMPACT. The current study evaluated the IMPACT-III questionnaire in order to look at different aspects of one's HRQOL. Using statistical analyses, which look at how closely related items on the questionnaire are to one another, the IMPACT-III questionnaire can now be said to measure the following four domains (or aspects of HRQOL):

    1. General well-being, which has items asking about daily functioning and physical symptoms such as stomach pain.
    2. Social functioning, which asks about social aspects of one's life that are impacted by having IBD, and other disease symptoms such as fecal urgency that have a direct social impact.
    3. Emotional functioning, that has questions asking patients about how having IBD affects a person emotionally, and
    4. Body Image, asking patients how they feel about their physical appearance.
    This questionnaire and its domains can be used to show how someone' s HRQOL changes over the course of treatment.
    Scientific Abstract

  • Pediatric IBD-Specific Anxiety Scale: A Novel Measure for Identifying Disease Distress. Presentation Date: December 12, 2015
    Some youth with inflammatory bowel disease (IBD) develop anxiety and may experience emotional distress because of their IBD. They may try to avoid school, or experience body sensations or repeated thoughts. Several years ago a questionnaire called the IBD-Specific Anxiety Scale (IBD-SAS) was created to measure this type of anxiety. Because we live in a changing world, questionnaires like these need to be updated every few years, to improve how well it measures anxiety. To do this, we used the CCFA Partners Kids and Teens Registry, a national internet-based group of children and adolescents who have IBD. Overall, 133 teens, ages 12-17, completed the revised IBD-SAS questionnaire. Most of the participants were white males with Crohn's disease who were currently in remission. The researchers found that IBD-SAS measured two types of IBD anxiety. The first area was related to Physical Symptoms and Medical Management, such as having pain or medication side-effects. The second area was related to Psychosocial Implications of disease, such as not being able to attend school or worrying about what friends might think. Once the questionnaire is fully validated, it will provide a way to help identify IBD-related anxiety so it can be treated. It will also help scientists understand how this kind of anxiety affects children both emotionally and physically.
    Scientific Abstract

  • Use of the Patient Reported Outcomes Measurement Information System (PROMIS) in a Pediatric Cohort with Inflammatory Bowel Disease (IBD). Presentation Date: May 3, 2014
    The Patient Reported Outcomes Measurement Information System (PROMIS) tool is used to assess self-reported measures of physical, emotional, and social health. We used the PROMIS tool to ask children ages 9-17 years with inflammatory bowel disease (IBD) about their experience with pain interference, anxiety, depression, fatigue, and peer relationships. We also asked patients about their quality of life and disease activity. Among the 359 respondents, increased disease activity was associated with a worsening in all PROMIS measures evaluated: pain interference, anxiety, depression, fatigue, and peer relationships. At the same time, reduced disease activity was associated with improvements in all aforementioned domains.
    Scientific Abstract

  • Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD. Presentation Date: Dec 12-14, 2013
    After the successful launch of CCFA Partners for adult patients with inflammatory bowel disease, the kids and teens component (CCFA Partners Kids & Teens) started in 2013. In partnership with the Crohn's and Colitis Foundation of America (CCFA), children <18 years of age were asked to join the internet-based study through email invitations and promotion on social media sites. After informed consent, the children and their parents completed surveys asking questions about their disease, their medications and other patient reported outcomes (such as quality of life, fatigue, sleep, peer relations, mood, etc). In the first month, 419 children joined. The average age was 13, with about 1/2 being female and about 3/4 having Crohn's disease (CD). Common medications used by patients with CD were biologics, thiopurines (6mp or azathioprine) or mesalamine-based medications (Pentasa, Lialda, Apriso, etc). The most common medication for patients with ulcerative colitis (UC) was mesalamine-based medications. Most of the CD patients were in remission and most UC patients had mild disease. Children who had active disease had more depression and anxiety. Following this group of children over time will help us to learn a great deal about living with IBD as a child, and will allow us to follow these children into adulthood to learn even more about the disease itself, the impact of medications, and how symptoms change over time.
    Scientific Abstract

IBD Partners Kids & Teens Manuscripts
  • Patient-Reported Outcomes Measurement Information System in Children with Crohn's Disease. Publication Date: July 2016
    The Patient Reported Outcomes Measurement Information System (PROMIS) tool is used to assess self-reported measures of physical, emotional, and social health. We used the PROMIS tool to ask children ages 9-17 years with inflammatory bowel disease (IBD) about their experience with pain interference, anxiety, depression, fatigue, and peer relationships. We also asked patients about their quality of life and disease activity. Among the 276 respondents, increased disease activity was associated with a worsening in all PROMIS measures evaluated: pain interference, anxiety, depression, fatigue, and peer relationships. At the same time, reduced disease activity was associated with improvements in all aforementioned domains.
    Scientific Manuscript