What do patients want to know about their inflammatory bowel disease? 1992

A Martin, and L Leone, and I Castagliuolo, and F Di Mario, and R Naccarato
Istituto di Medicina Interna, Divisione di Gastroenterologia, Università di Padova, Italy.

Being informed is not only a patient's right, it is also important in order to improve compliance and management. Apart from verbal consultations, informative material is often produced without prior analysis of what patients consider important to know. Patient information needs were defined in order to plan future educational programmes. A 44-item questionnaire was given to 100 Inflammatory Bowel Disease (IBD) out-patients (50 Crohn's Disease (CD) and 50 Ulcerative Colitis (UC). Sixty-two per cent of those with UC and 78% of those with CD consider themselves insufficiently informed about their disease. CU and CD patients indicated different priorities concerning areas where further information is requested: CD patient needs were aetiology, diet, symptoms, history, new treatments, risks deriving from treatment, cancer risk and consequences on work. UC patients indicated a different priority order: risk of cancer, new treatments, symptoms, psychological and diet factors and aetiology. The media preferred by patients were: specifically prepared books (73%), video-cassettes (20%) and leaflets (25%). Ninety per cent think that educational material prepared according to their needs could be very useful; however 35% think that knowledge of the possible severity of their disease might increase their anxiety.

UI MeSH Term Description Entries
D007722 Health Knowledge, Attitudes, Practice Knowledge, attitudes, and associated behaviors which pertain to health-related topics such as PATHOLOGIC PROCESSES or diseases, their prevention, and treatment. This term refers to non-health workers and health workers (HEALTH PERSONNEL). Knowledge, Attitudes, Practice
D010353 Patient Education as Topic The teaching or training of patients concerning their own health needs. Education of Patients,Education, Patient,Patient Education
D011795 Surveys and Questionnaires Collections of data obtained from voluntary subjects. The information usually takes the form of answers to questions, or suggestions. Community Survey,Nonrespondent,Questionnaire,Questionnaires,Respondent,Survey,Survey Method,Survey Methods,Surveys,Baseline Survey,Community Surveys,Methodology, Survey,Nonrespondents,Questionnaire Design,Randomized Response Technique,Repeated Rounds of Survey,Respondents,Survey Methodology,Baseline Surveys,Design, Questionnaire,Designs, Questionnaire,Methods, Survey,Questionnaire Designs,Questionnaires and Surveys,Randomized Response Techniques,Response Technique, Randomized,Response Techniques, Randomized,Survey, Baseline,Survey, Community,Surveys, Baseline,Surveys, Community,Techniques, Randomized Response
D003093 Colitis, Ulcerative Inflammation of the COLON that is predominantly confined to the MUCOSA. Its major symptoms include DIARRHEA, rectal BLEEDING, the passage of MUCUS, and ABDOMINAL PAIN. Colitis Gravis,Idiopathic Proctocolitis,Inflammatory Bowel Disease, Ulcerative Colitis Type,Ulcerative Colitis
D003424 Crohn Disease A chronic transmural inflammation that may involve any part of the DIGESTIVE TRACT from MOUTH to ANUS, mostly found in the ILEUM, the CECUM, and the COLON. In Crohn disease, the inflammation, extending through the intestinal wall from the MUCOSA to the serosa, is characteristically asymmetric and segmental. Epithelioid GRANULOMAS may be seen in some patients. Colitis, Granulomatous,Enteritis, Granulomatous,Enteritis, Regional,Ileitis, Regional,Ileitis, Terminal,Ileocolitis,Crohn's Disease,Crohn's Enteritis,Inflammatory Bowel Disease 1,Regional Enteritis,Crohns Disease,Granulomatous Colitis,Granulomatous Enteritis,Regional Ileitides,Regional Ileitis,Terminal Ileitis
D006801 Humans Members of the species Homo sapiens. Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D015212 Inflammatory Bowel Diseases Chronic, non-specific inflammation of the GASTROINTESTINAL TRACT. Etiology may be genetic or environmental. This term includes CROHN DISEASE and ULCERATIVE COLITIS. Bowel Diseases, Inflammatory,Inflammatory Bowel Disease

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