New information guides available for patients diagnosed with IBD
To help those with inflammatory bowel disease (IBD) be better informed and involved in managing their disease, the European Foundation of Crohn's & Ulcerative Colitis Associations (EFCCA) has launched a new series of guides titled "Life and IBD". For over one million people across Europe who have it, IBD can be an overwhelming experience with new physicians, medications and terminology.
The guides in the "Life and IBD" series are designed to be personalised so patients can access information appropriate to their life stage and disease severity.
The first guide contains useful information for patients about preparing for visits to the doctor, questions to ask their gastroenterologist and a self-assessment to determine the severity of IBD symptoms.
The second guide in the series provides a roadmap for developing an IBD management plan, which gives patients a clear strategy for keeping their IBD symptoms under control.
The third guide in the series is intended to help patients understand their illness, what causes it, how it might affect them and their role in managing the illness.
"Often, patients are not sure how to speak openly and honestly about how their IBD is affecting them because of fear of embarrassment," said Marco Greco, Chairman of the EFCCA. "The 'Life and IBD' guides provide tools to help people with IBD keep the lines of communication open with their physician, making them a trusted partner in care."
According to a recent survey conducted by EFCCA, nearly half of physicians in Europe do not ask patients about their quality of life and nearly half of patients do not initiate a conversation about quality of life-related concerns with their physicians.
Discussing these concerns can provide important information about effectiveness of treatment, and materials such as the "Life and IBD" guides can help close the communication gap between physicians and patients and provide patients with a feeling of empowerment.
"Crohn's disease and ulcerative colitis are complicated diseases, with a number of varied symptoms, potential complications and treatment options," said Professor Subrata Ghosh, Imperial College, London, UK. "Because no two people with IBD are the same, it's important for patients to work closely with their physicians to ensure their treatment plans are meeting their needs."
For patients, open conversation with their physicians can help ensure their disease does not derail their lives. "I'm often forced to miss work because of my disease," said Alexandra Gliati of Greece, who has Crohn's disease.
"It's very important that I stay vigilant in treating my IBD to avoid a flare, and the information found in these guides has helped me talk to my doctor and better manage my disease."