Living with @entity29 : A XXXX Canada survey.

@entity1 @entity30 @entity8787 @entity29
BACKGROUND: Despite improvements in therapies for @entity29 ( @entity29 ), @entity1 quality of life continues to be significantly impacted. OBJECTIVE: To assess the impact of @entity8787 on @entity1 and families with regard to leisure, relationships, mental well-being and financial security, and to evaluate the quality and availability of @entity8787 information. METHODS: An online survey was advertised on the @entity30 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 @entity8787 @entity1 and 32 family members. Among respondents with @entity8787 , 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. @entity1 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 @entity1 was their gastroenterologist (70%); however, most (70%) @entity1 preferred to obtain their information from the @entity30 Canada website. CONCLUSIONS: The impact of @entity8787 on interpersonal relationships and leisure activities was significant among @entity8787 @entity1 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.
