Sanna Lönnfors1, Severine Vermeire2, Marco Greco3, Daan Hommes4, Chayim Bell5, Luisa Avedano6. 1. European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), Brussels, Belgium. Electronic address: sannalonnfors@gmail.com. 2. European Crohn's and Colitis Organization (ECCO), Vienna, Austria. Electronic address: Severine.Vermeire@uzleuven.be. 3. European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), Brussels, Belgium. Electronic address: marco.greco@efcca.org. 4. European Crohn's and Colitis Organization (ECCO), Vienna, Austria. Electronic address: DHommes@mednet.ucla.edu. 5. European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), Brussels, Belgium. Electronic address: chayim.bell@efcca.org. 6. European Federation of Crohn's and Ulcerative Colitis Associations (EFCCA), Brussels, Belgium. Electronic address: luisa.avedano@efcca.org.
Abstract
BACKGROUND AND AIMS: Although inflammatory bowel diseases (IBD) significantly impact the patient's quality of life, no European-level data exists on patients' perspectives. The primary objective of this survey was to obtain an international perspective of the impact of IBD on patients' lives. Secondary objectives included obtaining a better understanding of the quality of care, access to care, and differences between countries, age groups, and sub-groups of IBD. METHODS: The survey questionnaire consisted of 52 questions in six categories. The survey was translated into ten languages, tested on volunteers, and promoted across 25 national IBD associations. Data was collected anonymously online, and participation was optional. RESULTS: 4670 patients completed the survey. Most respondents received a final diagnosis within a year from noticing first symptoms, but 67% had to visit emergency clinic at least once before diagnosis. 85% had been hospitalized in the last five years. 64% felt that gastroenterologists should ask more probing questions and 54% that they did not get to tell something potentially important to their physician. Most respondents experienced symptoms weekly also in remission. Most had been absent from work due to IBD and 24% had received unfair comments about their work performance. 45% felt that IBD had negatively affected their performance in educational settings. CONCLUSIONS: The results of this survey can be used in defining strategic priorities and planning projects and awareness raising activities. The unmet needs of IBD patients can be better demonstrated and communicated to the public, health service managers and politicians.
BACKGROUND AND AIMS: Although inflammatory bowel diseases (IBD) significantly impact the patient's quality of life, no European-level data exists on patients' perspectives. The primary objective of this survey was to obtain an international perspective of the impact of IBD on patients' lives. Secondary objectives included obtaining a better understanding of the quality of care, access to care, and differences between countries, age groups, and sub-groups of IBD. METHODS: The survey questionnaire consisted of 52 questions in six categories. The survey was translated into ten languages, tested on volunteers, and promoted across 25 national IBD associations. Data was collected anonymously online, and participation was optional. RESULTS: 4670 patients completed the survey. Most respondents received a final diagnosis within a year from noticing first symptoms, but 67% had to visit emergency clinic at least once before diagnosis. 85% had been hospitalized in the last five years. 64% felt that gastroenterologists should ask more probing questions and 54% that they did not get to tell something potentially important to their physician. Most respondents experienced symptoms weekly also in remission. Most had been absent from work due to IBD and 24% had received unfair comments about their work performance. 45% felt that IBD had negatively affected their performance in educational settings. CONCLUSIONS: The results of this survey can be used in defining strategic priorities and planning projects and awareness raising activities. The unmet needs of IBD patients can be better demonstrated and communicated to the public, health service managers and politicians.
Authors: Gottfried Novacek; Hans Peter Gröchenig; Thomas Haas; Heimo Wenzl; Pius Steiner; Robert Koch; Thomas Feichtenschlager; Gerald Eckhardt; Andreas Mayer; Andreas Kirchgatterer; Othmar Ludwiczek; Reingard Platzer; Pavol Papay; Johanna Gartner; Harry Fuchssteiner; Wolfgang Miehsler; Paul-Gerhard Peters; Gerhard Reicht; Harald Vogelsang; Clemens Dejaco; Thomas Waldhör Journal: Wien Klin Wochenschr Date: 2019-02-04 Impact factor: 1.704
Authors: Pierre Annede; Thomas Seisen; Caroline Klotz; Renaud Mazeron; Pierre Maroun; Claire Petit; Eric Deutsch; Alberto Bossi; Christine Haie-Meder; Cyrus Chargari; Pierre Blanchard Journal: J Gastrointest Oncol Date: 2017-02
Authors: L Peyrin-Biroulet; W Sandborn; B E Sands; W Reinisch; W Bemelman; R V Bryant; G D'Haens; I Dotan; M Dubinsky; B Feagan; G Fiorino; R Gearry; S Krishnareddy; P L Lakatos; E V Loftus; P Marteau; P Munkholm; T B Murdoch; I Ordás; R Panaccione; R H Riddell; J Ruel; D T Rubin; M Samaan; C A Siegel; M S Silverberg; J Stoker; S Schreiber; S Travis; G Van Assche; S Danese; J Panes; G Bouguen; S O'Donnell; B Pariente; S Winer; S Hanauer; J-F Colombel Journal: Am J Gastroenterol Date: 2015-08-25 Impact factor: 10.864