Impact of inflammatory bowel disease on quality of life: Results of the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) patient survey.

BACKGROUND: : The predominant symptoms of inflammatory bowel disease (IBD) are diarrhoea, abdominal pain, gastrointestinal bleeding, weight loss, malnutrition and fatigue. These symptoms can have substantial psychosocial implications and cause sufferers to limit their lifestyles, with consequent impact on quality of life (QoL). AIMS: : To survey the impact of IBD on peoples' lives as well as opinions of treatment and patient-doctor communication in a large European cohort of patients. SUBJECTS AND METHODS: : Seven organisations affiliated with the European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA) distributed questionnaires to 12,200 members between May and August 2005. In total, 5636 responses were received and analysed using descriptive statistics.
RESULTS: : Of 5576 patients with evaluable responses, 1000 (17.9%) were not currently receiving any treatment, and 3109 (55.8%) were currently receiving anti-inflammatory/5-aminosalicylic acid, 1143 (25.9%) receiving immunomodulators, and 1076 (19.3%) receiving steroids (biologics constituted 4%; however, at the time of this survey they were not approved for use in treating patients with UC). Three quarters were either very (n=2233, 40.0%) or somewhat (n=2010, 36.0%) satisfied with the results obtained from their current treatment medication. If given a choice, 4819 (86.4%) said they would rather try a new type of drug therapy than undergo surgery. However, only 2182 (39.1%) reported that their doctor talked to them about newly developed treatments. Three quarters (75.6%, n=4213) reported that symptoms affect their ability to enjoy leisure activities, while over two thirds (68.9%, n=3841) felt symptoms affected their ability to perform at work. However, nearly half (n=2666, 47.8%) reported that their doctor does not ask about the impact of symptoms on their QoL. For those patients who received immunomodulators, 72.7% reported QoL improvements (1462/2012) while 72.8% reported QoL improvements with steroids (2622/3601). 75% of patients with CD who received biologic therapy (6% of responders) stated that their QoL improved following biologic therapy.
CONCLUSIONS: IBD symptoms have a substantial impact on patients' lives, and QoL as well as new treatments should be an important feature of patient-physician discussions. The survey results may point to areas where support of IBD patients might be improved.