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. 2015 Mar;29(2):77-84.
doi: 10.1155/2015/815820.

Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey

Helen M Becker, Daniel Grigat, Subrata Ghosh, Gilaad G Kaplan, Levinus Dieleman, Eytan Wine, Richard N Fedorak, Aida Fernandes, Remo Panaccione, Herman W Barkema

Living with inflammatory bowel disease: A Crohn's and Colitis Canada survey

Helen M Becker et al. Can J Gastroenterol Hepatol. 2015 Mar.

Abstract
in English, French

Background: Despite improvements in therapies for inflammatory bowel diseases (IBDs), patient quality of life continues to be significantly impacted.

Objective: To assess the impact of IBD on patients and families with regard to leisure, relationships, mental well-being and financial security, and to evaluate the quality and availability of IBD information.

Methods: An online survey was advertised on the Crohn's and Colitis Canada website, and at gastroenterology clinics at the University of Alberta Hospital (Edmonton, Alberta) and University of Calgary Hospital (Calgary, Alberta).

Results: The survey was completed by 281 IBD patients and 32 family members. Among respondents with IBD, 64% reported a significant or major impact on leisure activities, 52% a significant or major impact on interpersonal relationships, 40% a significant or major impact on financial security, and 28% a significant or major impact on planning to start a family. Patient information needs emphasized understanding disease progression (84%) and extraintestinal symptoms (82%). There was a strong interest in support systems such as health care insurance (70%) and alternative therapies (66%). The most common source of information for patients was their gastroenterologist (70%); however, most (70%) patients preferred to obtain their information from the Crohn's and Colitis Canada website.

Conclusions: The impact of IBD on interpersonal relationships and leisure activities was significant among IBD patients and their families. Understanding the disease, but also alternative treatment options, was of high interest. Currently, there is a discrepancy between interest in information topics and their availability. Respondents reported a strong desire to obtain information regarding disease progression, especially extraintestinal symptoms.

HISTORIQUE :: Malgré les améliorations aux traitements des maladies inflammatoires de l’intestin (MII), la qualité de vie des patients continue d’être considérablement touchée.

OBJECTIF :: Évaluer les effets des MII sur les patients et leur famille en ce qui a trait aux loisirs, aux relations, au bien-être mental et à la sécurité financière, ainsi que la qualité et l’accessibilité de l’information sur les MII.

MÉTHODOLOGIE :: Un sondage virtuel a été annoncé dans le site Web de Crohn et Colite Canada ainsi qu’aux cliniques de gastroentérologie de l’University of Alberta Hospital d’Edmonton et de l’University of Calgary Hospital, en Alberta.

RÉSULTATS :: Dans l’ensemble, 281 patients atteints d’une MII et 32 membres de leur famille ont rempli le sondage. Les répondants atteints d’une MII ont déclaré un effet significatif ou majeur sur leurs loisirs (64 %), leurs relations interpersonnelles (52 %), leur sécurité financière (40 %) et leur planification pour fonder une famille (28 %). Ils voulaient plus d’information sur l’évolution de la maladie (84 %) et les symptômes extra-intestinaux (82 %). Ils manifestaient beaucoup d’intérêt envers les systèmes de soutien comme l’assurance médicale (70 %) et les traitements parallèles (66 %). Le gastroentérologue (70 %) était leur principale source d’information, mais la plupart (70 %) préféraient obtenir l’information dans le site Web de Crohn et Colite Canada.

CONCLUSIONS :: Les MII ont des effets significatifs sur les relations interpersonnelles et les loisirs des patients atteints d’une MII et de leur famille. Les répondants manifestaient beaucoup d’intérêt à comprendre leur maladie, mais également les possibilités de traitements parallèles. Ils constataient un écart entre leur intérêt envers les sujets d’information et leur accessibilité. Ils se disaient très désireux d’obtenir de l’information sur l’évolution de la maladie, notamment les symptômes extra-intestinaux.

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Figures

Figure 1)
Figure 1)
Inclusion and exclusion criteria. Respondents who did not give their digital consent, who lived in countries other than Canada or who skipped the survey questions were excluded. The included study population consisted of 313 individuals, of whom 32 are family members of inflammatory bowel disease (IBD) patients, and 281 are affected with Crohn disease, ulcerative colitis or IBD unclassified. IBS Irritable bowel syndrome
Figure 2)
Figure 2)
Three most relevant topics (A, B, C) of the impact of inflammatory bowel disease (IBD) on the lives of IBD patients and family members were assessed (no impact to major impact)
Figure 3)
Figure 3)
Knowledge translation topics relevant to inflammatory bowel disease (IBD) patients. Answers to open-ended questions were assigned to 10 topics and responses were counted. A combination of multiple topics in one answer was possible (n=159)
Figure 4)
Figure 4)
Quality and availability of information and level of interest in 281 Canadian inflammatory bowel disease (IBD) patients. Quality and availability of information on medical (A), management of IBD (B) and health care-related topics (C) was assessed, in addition to the level of interest in these topics. Percentages of responses ‘somewhat interested’ and ‘very interested’ were cumulated to provide an overall picture of the level of interest
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