The Communicating Needs and Features of IBD Experiences (CONFIDE) Study
CONFIDE Study
The Communicating Needs and Features of IBD Experiences (CONFIDE) Study was an online, quantitative, cross sectional survey of healthcare providers (HCPs) and patients, aiming to provide further understanding of the burden, barriers, and care experience of those living with inflammatory bowel disease (IBD), as well as to elucidate gaps in communication between HCPs and patients. Study results shown include HCPs and patients from the United States (US) and Europe (EU) (UK, France, Spain, Germany, and Italy).1
This study was sponsored by Eli Lilly and Company and conducted from July to September 2021.1
CONFIDE was an online survey to help understand quality of life of patients with IBD and communication gaps between HCPs and patients.
There were 2 online, quantitative, cross sectional surveys each for HCPs and patients with IBD. Participants were required to meet the defined eligibility criteria, provide informed consent, and complete the full survey. Surveys were completed by a total of 415 US and 1,103 European patients and 200 US and 503 European HCPs.1,2
Survey Development
The survey was developed by a panel of gastroenterologists from around the globe with experience in IBD patient reported outcomes research. They provided input for both the HCP and patient surveys.1,2
Survey Development2
Patients with IBD (n=5) gave input on the patient survey.
Key Eligibility Criteria for HCPs1
- A gastroenterologist, internal medicine physician with GI focus, IBD nurse specialist (UK only), nurse practitioner (US only), or physician assistant (US only)
- Responsible for making prescribing decisions for at least 10 patients per month with IBD, of which at least 5 of whom must be patients with moderate-to-severe disease
- Spending 50% or more of working time actively seeing patients
HCP Demographics1
Targets were set in the US and UK with the goal of including ~15% nurse practitioners/specialists and physician assistants and 85% gastroenterologists to reflect clinical dynamics
Key Eligibility Criteria for Patients1,2
- Aged ≥ 18 years
- IBD diagnosed by an HCP (as reported by the patient)
- Had active disease of at least moderate severity as defined by meeting at least one of the following criteria:
- Received anti-TNF, anti integrin, JAK inhibitor, anti-IL-12/23, or immunomodulator within the past years
- Received steroid treatment for at least 1 month in the past years
- Hospitalized for at least 4 consecutive weeks in the past 5 years
- No previous colectomy
- Not >20% of the total sample with concomitant irritable bowel syndrome diagnosis
Survey Administration 1
Online survey collected information on:
- Demographic/background
- Experience and impact of symptoms
- Disease burden
- HCP-Patient Communication
To identify symptoms experienced by patients in the past month and ever,patients were asked to select from a list of 30 symptoms:
- Which symptoms they currently experienced (from in the last month)
- Which symptoms they ever experienced (ever suffered from)
Patients then ranked these symptoms with the greatest impact. Some of the symptoms provided include diarrhea,blood in stool, bowel urgency, increased stool frequency, urge incontinence, fatigue/tiredness, persistent abdominal pain, and bowel urgency related accidents.
HCPs ranked the most common symptoms reported by patients, those with the greatest perceived impact, and potential reasons for HCPs not proactively discussing certain symptoms with patients with IBD.
GI=Gastrointestinal; IBD=Inflammatory Bowel Disease; IL=Interleukin.
References
- Travis S, Potts Bleakman A, Dubinsky MC, et al. The communicating needs and features of IBD experiences (confide) study: US and European Patient and health care professional perceptions of the experience and impact of symptoms of moderate to severe ulcerative colitis. Inflamm Bowel Dis. 2023; doi: 10.1093/ibd/izad142 (Ahead of print).
- Schreiber S, Gibble TH, Dubinsky MC, et al. Communicating Needs and Features of IBD Experiences (CONFIDE) Survey: Burden and Impact of Bowel Urgency is Similar in Patients with Moderate to Severe Crohn’s Disease and Ulcerative Colitis. Poster presented at American College of Gastroenterology; 20-25 October 2023; Vancouver, Canada. Poster P-0678.
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