Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey

BMC Gastroenterology

Research Article

Julián Panés¹  Edouard Louis²  Stefan Schreiber³  Derek Holley⁴  Mandy Buch⁴  Kristine Paridaens⁵ 

[1] Department of Gastroenterology, Hospital Clínic of Barcelona, IDIBAPS, CIBERehd, Barcelona, Spain;Department of Gastroenterology, University Hospital of Liège (CHU), Liège University, Liège, Belgium;Department of Medicine I, University Hospital Schleswig-Holstein, Christian Albrechts University, Kiel, Germany;GfK HealthCare, London, United Kingdom;Shire AG, Eysins, Switzerland;

关键词: 5-aminosalicyclic acid;    Survey;    Physicians;    Nurses;    Quality of life;    Ulcerative colitis;   

DOI  :  10.1186/1471-230X-12-108

 received in 2011-12-29, accepted in 2012-08-06,  发布年份 2012

来源: Springer

【 摘 要 】

BackgroundThe purpose of this study was to examine the differing perspectives and perceptual gaps relating to ulcerative colitis (UC) symptoms and their management between patients and healthcare professionals (HCPs).MethodsStructured, cross-sectional, Web-based questionnaires designed to assess a variety of disease indices were completed by adult patients with UC and HCPs involved in the care of patients with UC from Canada, France, Germany, Ireland, Spain, and the United Kingdom.ResultsSurveys were completed by 775 patients, 475 physicians, and 50 nurses. Patient self-reported classification of disease severity revealed generally greater severity (mild, 32%; moderate, 53%) compared with physician and nurse estimates of UC severity among their caseloads (mild, 52% and 49%; moderate, 34% and 37%, respectively). Patients reported that an average of 5.5 (standard deviation, 11.0) flares (self-defined) occurred over the past year, compared with 3.4 and 3.8 flares per year estimated by physicians and nurses. Perceived flare triggers differed between patients (stress ranked first) and HCPs (natural disease course ranked first). Fifty-five percent of patients stated that UC symptoms over the past year had affected their quality of life, while physicians and nurses estimated that 35% to 37% of patients would have a reduced quality of life over the same period. Patients ranked urgency and pain as the most bothersome symptoms, while physicians and nurses ranked urgency and stool frequency highest. About half of patients (47%) defined remission as experiencing no symptoms; by comparison, 62% to 63% of HCPs defined remission as requiring the complete absence of symptoms. HCPs (doctors/nurses in general practice and/or hospital) were regarded by patients as their main source of UC information by 72%; however, 59% reported not arranging regular visits to see their HCPs.ConclusionsThis large survey identified important differences between patients' and HCPs' perceptions of the impact of UC symptoms on patients' lives. Notably, HCPs may underestimate the effect of specific UC symptoms on patients and may fail to recognize issues that are important to patients.

【 授权许可】

CC BY   
© Schreiber et al.; licensee BioMed Central Ltd. 2012