Mission is Remission®: How Can a Disease Self-management Website Change Care?

Background How do health care professionals help children, help themselves? How do patients become active participants in their own care? The prevalence of chronic conditions, such as IBD, is increasing in Canada [1, 2]. Health care systems need to look for sustainable and effective solutions to improve patient care while reducing health care costs. Crohn's disease (CD) and ulcerative colitis (UC), known collectively as IBD, are chronic relapsing and remitting diseases associated with significant medical (i.e., number of hospitalizations, frequent need for surgery, growth failure) and social (i.e., school absences, interference with pursuit of higher education) morbidity [3]. Medical and social morbidity of IBD are intertwined, and take a significant toll on the health-related quality of life (HRQOL) of these patients [4-6].

IBD manifests during childhood or adolescence in 20% to 25% of patients [7]. This is a crucial time in children's development, both physically [8] and emotionally [9]. Children's relationships with family and peers change significantly over the course of their childhood. Normal social development sees children seeking more emotional support from peers over family members in their adolescent years [10]. However, adolescents with IBD do not follow this pattern [11] and tend to seek continued support from family members and rely on parents' coping strategies to deal with stressors [12]. With increased reliance on family support when dealing with a chronic illness like IBD, children may be faced with additional burden when their parents' are not able to offer them the emotional support they need or do not have coping skills that are effective enough to translate into increased care for their children. Despite this, no interventions (to the authors' knowledge) to benefit psychosocial functioning have been specifically studied in pediatric patients or families with IBD.

Current medical intervention tends to focus exclusively on the disease, and does not focus on disease management and coping through self-management skills. Disease self-management involves -the interaction of health behaviours and related processes that patients and families engage in to care for a chronic disease‖ [13]. Studies in both the adult and pediatric chronic illness literature have shown that comprehensive interventions that augment medical treatments with self management therapy, lead to better medical outcomes and better quality of life than care that is strictly medically focused [4-6, 14-24]. These self-management studies are focused on chronic diseases such as diabetes, asthma and rheumatoid arthritis. There have been several small studies of psychological interventions in adult IBD patients with promising results, though issues with design limited the interpretation of the results [25-28]. Disease self-management is more than simple adherence to treatment guidelines - it also incorporates psychological and social management of living with a chronic illness.

-It's something the investigators know intuitively, but it's also supported by evidence: A child's living conditions and experiences - the determinants of health - shape his or her physical health, development, and well-being, affecting not only childhood but the foundation of their health as adults [29, 30].‖ (Stepping it up Report, pg. 23, Health Council of Canada).

Children's experiences (i.e. access to services), can be directly affected through disease self-management. Self-management training is often provided by tertiary care clinics, which includes disease education, and encouragement/support, usually at the time of diagnosis. Most care is given in concentrated sessions during crises times and is in response to a particular problem, which is not the best time to teach self-management skills. Families who are extremely distressed may, in rare cases, receive formal psychological therapy. Although most families receive excellent medical care in the tertiary care centres, the vast majority of patients do not receive comprehensive disease education and self-management therapy. Very few children with IBD receive comprehensive education and self management therapy even when they attend well organized tertiary care clinics.