And most have received treatments aimed at modifying immune system responses to control their disease.
About 1 in 5 young patients with ulcerative colitis have had surgery, and most have received treatments aimed at modifying immune system responses to control their disease. Those are some of the results from initial data collected from a groundbreaking research initiative sponsored by the Crohn’s & Colitis Foundation (CCFA) to provide a snapshot of the health and well-being of children and adolescents living with inflammatory bowel diseases (IBD), according to research presented at the 2013 Advances in Inflammatory Bowel Diseases, CCFA's annual Clinical & Research Conference.
“As much as possible, we wanted to try to capture the experience of living with IBD from the perspective of the patients,” said lead author Michael D. Kappelman, MD, of the University of North Carolina at Chapel Hill. Nearly one-fourth of people with IBD are diagnosed during the childhood or teenage years, and children are the fastest-growing population of IBD patients, he said.
The new report presents baseline data on 419 patients, median age 13 years, enrolled during the first month of CCFA Partners Kids & Teens. The study has created an Internet community of young patients with IBD. The goal is to track their disease, treatment, and outcomes into adulthood.
“CCFA Partners Kids & Teens seeks to establish a rich patient database that will help to hasten new research discoveries and translate them into treatments that will improve the lives of patients living with IBD,” said Dr Kappelman.
The new initiative builds on CCFA Partners, an Internet-based study of adult IBD patients. For the first time, patients aged 18 and younger were invited to enroll in CCFA Partners Kids & Teens. After giving informed consent, patients and parents completed surveys providing information on their disease, how it’s being treated, and how it’s affecting their lives.
Many patients, including close to 20% of patients with UC, had already undergone surgery. At the time they completed the questionnaires, the patients typically had well-controlled disease. Most of the children, especially in the Crohn disease group, had received treatments aimed at modifying immune system responses.
Scores on a standard questionnaire indicated fairly good quality of life, although the children scored above population norms on anxiety, depression, and fatigue symptoms. Anxiety and depression scores were higher for children who had active IBD.
CCFA Partners Kids & Teens focuses on aspects of IBD that are most important to patients and their parents, including health behaviors, disease symptoms, and quality of life. The entire study takes place over the Internet and is implemented by CCFA’s Data Management Center at UNC. The information provided is kept completely confidential on UNC’s secure servers. For more information or to enroll in the study, visit the Web site.
As they reach their 18th birthday, Kids & Teens participants will transition to the CCFA Partners Study, allowing for systematic collection of comprehensive data from childhood into adulthood. Plans are in place to link the CCFA Partners data to other research initiatives and to encourage open sharing of data from both the pediatric and adult studies.