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

BMC Gastroenterology

Kristine Paridaens³  Mandy Buch⁵  Derek Holley⁵  Edouard Louis⁴  Julián Panés²  Stefan Schreiber¹ 

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

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

Others  :  1121891
DOI  :  10.1186/1471-230X-12-108

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

【 摘 要 】

Background

The 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).

Methods

Structured, 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.

Results

Surveys 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.

Conclusions

This 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】

   
2012 Schreiber et al.; licensee BioMed Central Ltd.

【 图 表 】

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【 参考文献 】

• [1]Cosnes J, Gower-Rousseau C, Seksik P, Cortot A: Epidemiology and natural history of inflammatory bowel diseases. Gastroenterology 2011, 140:1785-1794.
• [2]Irvine EJ: Quality of life of patients with ulcerative colitis: past, present, and future. Inflamm Bowel Dis 2008, 14:554-565.
• [3]Travis SP, Stange EF, Lemann M, Oresland T, Bemelman WA, Chowers Y, Colombel JF, D'Haens G, Ghosh S, Marteau P, Kruis W, Mortensen NJ, Penninckx F, Gassull M: European evidence-based Consensus on the management of ulcerative colitis: Current management. J Crohns Colitis 2008, 2:24-62.
• [4]Bernstein CN, Fried M, Krabshuis JH, Cohen H, Eliakim R, Fedail S, Gearry R, Goh KL, Hamid S, Khan AG, LeMair AW, Malfertheiner , Ouyang Q, Rey JF, Sood A, Steinwurz F, Thomsen OO, Thomson A, Watermeyer G: World Gastroenterology Organization Practice Guidelines for the diagnosis and management of IBD in 2010. Inflamm Bowel Dis 2010, 16:112-124.
• [5]Kornbluth A, Sachar DB: Ulcerative colitis practice guidelines in adults: American College of Gastroenterology, Practice Parameters Committee. Am J Gastroenterol 2010, 105:501-523.
• [6]Loftus EV Jr: A practical perspective on ulcerative colitis: patients' needs from aminosalicylate therapies. Inflamm Bowel Dis 2006, 12:1107-1113.
• [7]Rubin DT, Siegel CA, Kane SV, Binion DG, Panaccione R, Dubinsky MC, Loftus EV, Hopper J: Impact of ulcerative colitis from patients' and physicians' perspectives: Results from the UC: NORMAL survey. Inflamm Bowel Dis 2009, 15:581-588.
• [8]Legal and Ethical Guidelines for Healthcare Market Research [http:/ / www.bhbia.org.uk/ Guidelines/ LegalandEthicalGuidelines/ tabid/ 143/ Default.aspx] webcite
• [9]Rubin DT, Dubinsky MC, Panaccione R, Siegel CA, Binion DG, Kane SV, Hopper J: The impact of ulcerative colitis on patients' lives compared to other chronic diseases: a patient survey. Dig Dis Sci 2010, 55:1044-1052.
• [10]Podolsky DK: Inflammatory bowel disease. N Engl J Med 2002, 347:417-429.
• [11]Kane S, Huo D, Aikens J, Hanauer S: Medication nonadherence and the outcomes of patients with quiescent ulcerative colitis. Am J Med 2003, 114:39-43.
• [12]Bhatt J, Patil S, Joshi A, Abraham P, Desai D: Self-reported treatment adherence in inflammatory bowel disease in Indian patients. Indian J Gastroenterol 2009, 28:143-146.
• [13]Higgins PD, Rubin DT, Kaulback K, Schoenfield PS, Kane SV: Systematic review: impact of non-adherence to 5-aminosalicylic acid products on the frequency and cost of ulcerative colitis flares. Aliment Pharmacol Ther 2009, 29:247-257.
• [14]Kane SV: Systematic review: adherence issues in the treatment of ulcerative colitis. Aliment Pharmacol Ther 2006, 23:577-585.
• [15]Noor SO, Ridgway K, Scovell L, Kemsley EK, Lund EK, Jamieson C, Johnson IT, Narbad A: Ulcerative colitis and irritable bowel patients exhibit distinct abnormalities of the gut microbiota. BMC Gastroenterol 2010, 10:134. BioMed Central Full Text
• [16]van Hees PAM, van Tongeren JHM: Compliance to therapy in patients on a maintenance dose of sulfasalazine. J Clin Gastroenterol 1982, 4:333-336.
• [17]Kane SV, Cohen RD, Aikens JE, Hanauer SB: Prevalence of nonadherence with maintenance mesalamine in quiescent ulcerative colitis. Am J Gastroenterol 2001, 96:2929-2933.
• [18]Shale MJ, Riley SA: Studies of compliance with delayed-release mesalazine therapy in patients with inflammatory bowel disease. Aliment Pharmacol Ther 2003, 18:191-198.
• [19]Ediger JP, Walker JR, Graff L, Lix L, Clara I, Rawsthorne P, Rogala L, Miller N, McPhail C, Deering K, Bernstein CN: Predictors of medication adherence in inflammatory bowel disease. Am J Gastroenterol 2007, 102:1417-1426.
• [20]Moshkovska T, Stone MA, Clatworthy J, Smith RM, Bankart J, Baker R, Wang J, Horne R, Mayberry JF: An investigation of medication adherence to 5-aminosalicylic acid therapy in patients with ulcerative colitis, using self-report and urinary drug excretion measurements. Aliment Pharmacol Ther 2009, 30:1118-1127.
• [21]Kane S, Shaya F: Medication non-adherence is associated with increased medical health care costs. Dig Dis Sci 2008, 53:1020-1024.
• [22]Bernklev T, Jahnsen J, Aadland E, Sauar J, Schulz T, Lygren I, Henriksen M, Stray N, Kjellevold O, Vatn M, Moum B: Health-related quality of life in patients with inflammatory bowel disease five years after the initial diagnosis. Scand J Gastroenterol 2004, 39:365-373.
• [23]Casellas F, Arenas JI, Baudet JS, Fabregas S, Garcia N, Gelabert J, Medina C, Ochotorena I, Papo M, Rodrigo L, Malagelada JR: Impairment of health-related quality of life in patients with inflammatory bowel disease: a Spanish multicenter study. Inflamm Bowel Dis 2005, 11:488-496.
• [24]Janke KH, Klump B, Gregor M, Meisner C, Haeuser W: Determinants of life satisfaction in inflammatory bowel disease. Inflamm Bowel Dis 2005, 11:272-286.
• [25]Arbuthnott A, Sharpe D: The effect of physician-patient collaboration on patient adherence in non-psychiatric medicine. Patient Educ Couns 2009, 77:60-67.
• [26]Zolnierek KB, Dimatteo MR: Physician communication and patient adherence to treatment: a meta-analysis. Med Care 2009, 47:826-834.
• [27]Schreiber S, Panes J, Louis E, Holley D, Buch M, Pym N, Paridaens K: National differences in ulcerative colitis experience and management among patients from five European countries: an online survey.
• [28]Loftus EV Jr, Silverstein MD, Sandborn WJ, Tremaine WJ, Harmsen WS, Zinsmeister AR: Ulcerative colitis in Olmsted County, Minnesota, 1940–1993: incidence, prevalence, and survival. Gut 2000, 46:336-343.
• [29]Magro F, Portela F, Lago P, Deus J, Cotter J, Cremers I, Vieira A, Peixe P, Caldeira P, Lopes H, Goncalves R, Reis J, Cravo M, Barros L, Ministro P, Lurdes TM, Duarte A, Campos M, Carvalho L: Inflammatory bowel disease: a patient's and caregiver's perspective. Dig Dis Sci 2009, 54:2671-2679.
• [30]Bolge SC, Waters H, Piech CT: Self-reported frequency and severity of disease flares, disease perception, and flare treatments in patients with ulcerative colitis: results of a national internet-based survey. Clin Ther 2010, 32:238-245.
• [31]Bjornsson S, Johannsson JH: Inflammatory bowel disease in Iceland, 1990–1994: a prospective, nationwide, epidemiological study. Eur J Gastroenterol Hepatol 2000, 12:31-38.
• [32]Karlinger K, Gyorke T, Mako E, Mester A, Tarjan Z: The epidemiology and the pathogenesis of inflammatory bowel disease. Eur J Radiol 2000, 35:154-167.
• [33]Wiercinska-Drapalo A, Jaroszewicz J, Flisiak R, Prokopowicz D: Epidemiological characteristics of inflammatory bowel disease in North-Eastern Poland. World J Gastroenterol 2005, 11:2630-2633.