Results
Below are manuscripts published by IBD Partners Kids & Teens researchers.


IBD Partners Kids & Teens Manuscripts


  • Anxiety and Depressive Symptoms Are Not Associated With Future Pediatric Crohn's Disease Activity Published: July, 2021
    Pediatric patients with IBD who have anxiety and depressive symptoms tend to have worse disease activity, but the impact of anxiety and depression on future IBD disease activity among children has not previously been explored. This study included children age 9 to 17 years with self-reported Crohn's Disease (CD) in the IBD Partners Kids & Teens study. The researchers found that neither anxiety nor depressive symptoms were associated with subsequent disease activity.
    Scientific Manuscript

  • Validity and Responsiveness of the Patient-reported Outcomes Measurement Information System in Children With Ulcerative Colitis. Published: July, 2021
    Patient-reported outcome (PRO) measures are used to assess how patients feel and function in their daily lives. PROMIS Pediatric measures look at self-reported physical, emotional, and social health in children with chronic conditions. This study provides evidence for the value of the PROMIS (Patient-Reported Outcomes Measurement Information System) Pediatric measures in pediatric patients with ulcerative colitis, supporting their use in research and patient care.
    Scientific Manuscript

  • Trajectories of the Transition Readiness Assessment Questionnaire Among Youth With Inflammatory Bowel Disease Published: 2021
    Transition readiness is the set of knowledge and skills that young people need in order to manage their health as adults. The Transition Readiness Assessment Questionnaire (also called the TRAQ) is one measure of transition readiness. Transition readiness goes up as people get older, but researchers did not have a clear sense of the average transition readiness scores for people of different ages. This made it hard to tell what score to expect for a particular person at a particular age. To address this, the researchers used data from IBD Partners. Participants in both IBD Partners and IBD Partners Kids & Teens between the ages of 12 and 21 chose to complete the TRAQ when they did surveys for IBD Partners. This study looked at how the scores changed over time.
    Scientific Manuscript

  • A New Domain Structure for the IMPACT-III Health-related Quality of life Tool for Pediatric Inflammatory Bowel Disease Published: October, 2020
    The IMPACT questionnaire was developed to measure health related quality of life (HRQOL) in pediatric patients with inflammatory bowel disease (IBD). This questionnaire measures the impact of disease and the psychological burden of IBD on an individual's functioning. This study evaluated the IMPACT-III questionnaire in order to look at different aspects of HRQOL. The study showed how the tool can be improved to better measure quality of life and better help with IBD management.
    Scientific Manuscript

  • Body Image Dissatisfaction among Pediatric Patients with Inflammatory Bowel Disease Published: August, 2020
    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 Manuscript

  • Responsiveness of the Patient-reported Outcomes Measurement Information System (PROMIS) Pediatric Measures to Changes in Disease Status and Quality of Life Among Children and Adolescents With Crohn's Disease Published: May 21, 2020
    Patient-reported outcome (PRO) measures are used to assess how patients feel and function in their daily lives. PROMIS Pediatric measures look at self-reported physical, emotional, and social health in children with chronic conditions. The researchers evaluated the responsiveness of the PROMIS Pediatric measures to changes in disease activity and disease-specific, health-related quality of life (HRQOL) in children with Crohn's disease (CD). They found that these measures respond to changes in disease status and HRQOL in a clinically meaningful manner, supporting the use of these measures in pediatric CD research.
    Scientific Manuscript

  • Transition Readiness Not Associated With Measures of Health in Youth With IBD Published: February 28, 2020
    Transition readiness is the set of knowledge and skills that young people need in order to manage their health as adults. The goal of this study was to describe the transition readiness of children and young adults with inflammatory bowel disease (IBD) and examine its associations with demographic factors, IBD activity, and measures of physical, psychological, and social health. The researchers found that transition readiness was not associated with measures of health.
    Scientific Manuscript

  • Psychometric evaluation of the IBD-specific Anxiety Scale (IBD-SAS): A novel measure of disease-related anxiety for adolescents with IBD Published May 1, 2018
    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. 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, researchers had participants in the IBD Partners Kids and Teens Registry complete the revised IBD-SAS questionnaire. 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. This provides 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 Manuscript

  • Sports Participation in Youth With Inflammatory Bowel Diseases: The Role of Disease Activity and Subjective Physical Health Symptoms. Published: December 31, 2017
    Physical activity is important for youth with inflammatory bowel diseases (IBD), and sports participation is a common way in which youth are physically active. This study examined the role of disease complications, body mass index (BMI), subjective physical health, and psychosocial functioning in influencing sports participation in a large sample of youth participating in IBD Partners Kids and Teens. Nearly two-thirds of the sample reported that their IBD resulted in some impairment in sports participation. Disease activity and subjective physical health symptoms such as fatigue were the most closely related factors to interference in sports participation. A greater understanding of potential barriers to sports participation may be useful for generating targeted physical activity recommendations for youth with IBD.
    Scientific Manuscript

  • Patient-Reported Outcomes Measurement Information System in Children with Crohn's Disease. Published: July 1, 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