Poster (15W134)

Patients’ experience of the Irish Society for Colitis and Crohns Disease (ISCC)

Author(s)

Mary Forry, Bruno Lucas, Mary Hamzawi, Ciaran Davis, Fergal Troy, Victoria Power, Patricia McArdle

Department(s)/Institutions

Irish Society for Colitis and Crohns Disease (ISCC)

Introduction

The Irish Society for Colitis and Crohns Disease (ISCC) was set up in 1984 to support people living with Inflammatory Bowel Disease (IBD).

Aims/Background

This survey aimed to gather patients’ experience of the ISCC and to ascertain if patients use the ISCC as a source of information about IBD.

Method

Questionnaires were distributed to ISCC members and non members. They were also distributed to Out Patient clinics and to Infusion Suites.

Results

200 questionnaires were analysed -100 male and 100 female. 48% of respondents were over 45.Only 32 % of respondents were ISCC members, with 71% of non-members saying they would consider joining. When questioned about where they got information regarding IBD – 42% got information from their Gastroenterologist, 25% from their nurse, 12% from General Practitioner, 12% from the ISCC, 2% from their pharmacist and 7% from other sources. While an overwhelming majority (95%) of people feel they get value from their ISCC membership, those affected by the condition want more. Suggestions to improve service from the ISCC included organizing additional services such as social and sport events, as well as more regular newsletters. Participants in this survey also wished to be kept up to date with research and clinical trials. Only 27% of respondents had attended an ISCC event, with 75% of those who haven’t attended an event saying they would do so in the future. The ISCC relies heavily on volunteers and 18% of respondents were willing to give some time to the ISCC.

Conclusions

200 questionnaires were analysed -100 male and 100 female. 48% of respondents were over 45.Only 32 % of respondents were ISCC members, with 71% of non-members saying they would consider joining. When questioned about where they got information regarding IBD – 42% got information from their Gastroenterologist, 25% from their nurse, 12% from General Practitioner, 12% from the ISCC, 2% from their pharmacist and 7% from other sources. While an overwhelming majority (95%) of people feel they get value from their ISCC membership, those affected by the condition want more. Suggestions to improve service from the ISCC included organizing additional services such as social and sport events, as well as more regular newsletters. Participants in this survey also wished to be kept up to date with research and clinical trials. Only 27% of respondents had attended an ISCC event, with 75% of those who haven’t attended an event saying they would do so in the future. The ISCC relies heavily on volunteers and 18% of respondents were willing to give some time to the ISCC.