Development of A Web-Based Self-Management Program for Teens With Ibd and Their Parents: the Mission Is Remission(C): 159

Background:

IBD adversely affects health-related quality of life (QOL) in children with IBD. Self-management interventions positively impact the QOL of patients in other chronic illnesses.

Aim:

To design and construct a web-enabled evidence based home program (IBDC) of self-management, information, and social support for pediatric IBD patients and their parents.

Methods:

Content was developed by pediatric gastroenterologists, nurses, psychologists, and dieticians, together with computer scientists with website development and gaming expertise. A pilot study in 40 patients (and 40 parents) is targeting the following outcomes: QOL, disease-specific knowledge, adherence to therapy, perceived stress and health care utilization.

Results:

Program development completed with website accessible via Internet by participants using unique usernames and passwords. Content is divided into 12 sessions, including disease-related knowledge and therapies; stress and pain management techniques. Information is imparted using text, flash animation and medical illustration, videos, and games to reinforce program content. Content is individualized based on disease type, treatments received, and can be targeted to reinforce areas of concern on the part of the patient, family or health care team. Participants (patient and one parent) work through each session and interact with a para-professional coach by phone who reinforces key session points and acts to ensure participants' questions are answered. Other website features include: peer-group chat rooms; a journal feature and message board; a News section where items of interest to participants will be posted; and private mail where the participant and coach can leave messages for each other. Outcome measures are completed online for immediate database entry. Testing and focus groups have demonstrated high levels satisfaction by participants.

Conclusions:

The web-based IBDC provides tertiary health services in a forum that is accessible to families without limitations of distance or school/work schedules.