Published Studies
Year | Publication | Categories |
---|---|---|
2021 |
Transition readiness curve in youth with IBD
Summary 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. Full Published Manuscript Keywords Pediatric; |
Pediatric |
2020 |
Transition Readiness Not Associated With Measures of Health in Youth With IBD
Summary Our objective was to describe the transition readiness (transitioning from child- to adult-centered healthcare) of children and young adults with inflammatory bowel disease (IBD) and study its relationships with age, sex, IBD activity, and measures of physical, psychological, and social health. Full Scientific Manuscript Keywords transition readiness; depression; anxiety; social health; quality of life; inflammatory bowel disease; |
Lifestyle, Health Maintenance |
2018 |
Body Image Dissatisfaction in Pediatric Patients with Inflammatory Bowel Diseases
Summary 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. Full Scientific Abstract Keywords body image; body image dissatisfaction; BID, anxiety; depression; mood disorder; psychosocial; pediatric; children; kids; K&T; kids & teens; IBD Partners Kids & Teens; |
Lifestyle, Health Maintenance, Mental Health |
2013 |
Development of CCFA Partners Kids & Teens: an Internet-Based Cohort of Pediatric IBD
Summary 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. Full Scientific Abstract Keywords kids & teens; K&T; pediatric; age; kids; teens; community; population; resource; |
Research Methods, Study Updates |