title: Inflammatory bowel disease: a patient's and caregiver's perspective.
abstract: The purpose of this study was to conduct a survey examining the impact of inflammatory bowel disease (IBD) on patients' and their caregivers' daily activities. Questionnaires were distributed to patients registered in the APDI (Portuguese Association for IBD) database and their respective caregivers in 2007. Of 422 patient respondents, 251 had Crohn's disease (CD) and 171 had ulcerative colitis (UC), with the majority of patients being women (58.1%) and aged over 40 years (37.4%). The number of disease flares experienced by IBD patients was slightly higher for patients with CD than for patients with UC (2.64 vs. 2.34), and surgery was more often required in CD patients as compared to UC patients (42.4 vs. 7%). Sixty percent (60%) of patients reported having no problems with mobility, daily activities, or personal hygiene; however, over half of all patients experienced some pain and anxiety. Adult patients and children and adolescents respectively experienced time off work or school due to their disease but caregivers were not affected in this regard. The caregivers life (N=324) was affected by anxiety, with the major concern reported as the risk of the patient developing cancer. Both IBD patients and caregivers thought that the provision of information on new drugs and contact time with a doctor would have the biggest impact on improving care. The symptoms and complications of IBD have a considerable impact on the lives of patients and their caregivers, and several actions could be taken to improve their care.
authors.affiliation: GEDII--Portuguese Group of Studies of IBD, Porto, Portugal. fm@med.up.pt
authors.forename: F
authors.initials: F
authors.lastname: Magro
authors.forename: F
authors.initials: F
authors.lastname: Portela
authors.forename: P
authors.initials: P
authors.lastname: Lago
authors.forename: J
authors.initials: J
authors.lastname: Deus
authors.forename: J
authors.initials: J
authors.lastname: Cotter
authors.forename: I
authors.initials: I
authors.lastname: Cremers
authors.forename: A
authors.initials: A
authors.lastname: Vieira
authors.forename: P
authors.initials: P
authors.lastname: Peixe
authors.forename: P
authors.initials: P
authors.lastname: Caldeira
authors.forename: H
authors.initials: H
authors.lastname: Lopes
authors.forename: R
authors.initials: R
authors.lastname: Gonçalves
authors.forename: J
authors.initials: J
authors.lastname: Reis
authors.forename: M
authors.initials: M
authors.lastname: Cravo
authors.forename: L
authors.initials: L
authors.lastname: Barros
authors.forename: P
authors.initials: P
authors.lastname: Ministro
authors.forename: M
authors.initials: M
authors.lastname: Lurdes Tavares
authors.forename: A
authors.initials: A
authors.lastname: Duarte
authors.forename: M
authors.initials: M
authors.lastname: Campos
authors.forename: L
authors.initials: L
authors.lastname: Carvalho
mesh_terms: D000203:Activities of Daily Living; D000223:Adaptation, Psychological; D000328:Adult; D001007:Anxiety / Q000209:etiology; D017028:Caregivers / Q000523:psychology*; D003093:Colitis, Ulcerative / Q000150:complications / Q000523:psychology* / Q000628:therapy; D017281:Cost of Illness; D003424:Crohn Disease / Q000150:complications / Q000523:psychology* / Q000628:therapy; D004346:Drug Information Services; D004651:Employment; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006306:Health Surveys; D006801:Humans; D006920:Hygiene; D008297:Male; D051346:Mobility Limitation; D010146:Pain / Q000523:psychology; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D011174:Portugal; D011787:Quality of Health Care; D011788:Quality of Life; D012042:Registries; D011795:Surveys and Questionnaires; D055815:Young Adult