IFFGD is conducting an IBS survey to assess the illness experience and unmet needs of IBS patients. The survey was established in 2020 and will be ongoing to collect as much patient data as possible.
This survey will take approximately 30-45 minutes to complete. The variation in time is dependent on each participant due to certain responses triggering additional follow-up questions. Participants must be diagnosed with IBS by a healthcare provider.
The IBS Patients’ Illness Experience and Unmet Needs Survey was originally conducted in 2007. The original survey was sponsored by IFFGD and in collaboration with the UNC Center for Functional GI and Motility Disorders. IFFGD is reimplementing this survey to evaluate the illness experience and unmet needs of the IBS patient community today. As thirteen years have passed since the findings of the 2007 survey were published, this is an opportunity to see if there have been significant changes in the illness experience for IBS patients.
IBS Research History
IFFGD has been studying IBS and its corresponding impact on patients for over 20 years. In 1999, a study was completed of 500 randomly selected IFFGD patient members. This quality of life survey was designed to measure demographics, types, and severity of symptoms, various other dimensions relating to the quality of life, the impact of the disorder on work or daily activities, interaction with the medical care system, use of medications, and use of alternative types of therapy. The results of the study by Hahn, Yan, and Strassels were published in the journal Digestion, 1999 Jan-Feb;60(1):77-81.
In 2002, a quantitative research study was conducted among 350 adults with IBS in IFFGD’s patient community. The survey found that most of these individuals were living with chronic symptoms that impaired their quality of life and productivity with few effective treatments. IFFGD’s IBS in the Real World Survey shows the real-life impact that irritable bowel syndrome (IBS) has on the lives of many of those who live with the disease. The results of this study were published by IFFGD in IBS in the Real World Survey: Summary Findings.
In 2004, IFFGD conducted a study among 1,000 U.S. adults in a random telephone survey looking at the prevalence and awareness of IBS. Thirteen percent of those surveyed had symptoms suggestive of IBS, yet less than 1 in 5 had been diagnosed. Among other findings, the IFFGD National IBS Survey shows that, while symptoms are negatively impacting quality of life, a lack of awareness about IBS may be getting in the way of diagnosis and treatment.
In 2007, IFFGD sponsored a survey in collaboration with the UNC Center for Functional GI and Motility Disorders to show the unmet needs of IBS patients. In this survey report, 1,966 responses were analyzed to show where these unmet needs are and to better understand the IBS illness experience. This survey was ongoing until 2016, with over 5,000 total responses. Read more about the IBS Patients: Their Illness Experience and Unmet Needs Survey, which is currently being conducted again. Follow this link to complete IFFGD’s 2020 IBS Patients’ Illness Experience and Unmet Needs Survey.