Irritable bowel syndrome (IBS) is notably complex to manage and successful control of digestive symptoms requires a personalized approach. As part of our work with the GI Consortium, a collaboration of leading brands in the IBS space, we conducted a survey of patients and healthcare providers to understand the challenges both groups face around IBS treatment and management and to shed light on unmet patient and provider needs. Findings revealed areas where those with IBS can benefit from additional support and helped uncover areas where more robust resources for healthcare providers could improve patient care.
Survey Background: Patient & Healthcare Provider Demographics
The surveys included 5,635 patients and 368 healthcare providers. Among patients, 87% identified as female, with a mean age of 56.3 years. Sixty-six (66%) percent of respondents reported having a confirmed IBS diagnosis, 20% suspected they had IBS, and 8% had not been diagnosed but experienced digestive symptoms. Among those with a formal diagnosis, 19.5% were diagnosed after the age of 50 and 15.3% were diagnosed between the ages of 21 and 30. Frequently reported comorbidities included anxiety, depression and migraines. Among those with co-existing digestive conditions, top comorbidities included gastroesophageal reflux disease (37%), non-celiac wheat sensitivity (21%) small intestinal bacterial overgrowth (17%) and celiac disease (12%).
Among healthcare providers, 87% were registered dietitians (RDs). The majority specialized in functional gastrointestinal conditions (65%), as well as celiac disease (39%) and inflammatory bowel conditions (40%). Roughly half (48%) reported seeing patients with functional gastrointestinal (GI) conditionals at least one per day.
Survey Results: Patient Experiences when Managing IBS
Patients reported a range of digestive symptoms. Eighty-six (86%) experienced abdominal pain, 85% bloating or distention, 81% gas, 71% diarrhea, 63% constipation and 48% urgency. Abdominal pain and bloating or distention were cited as the most bothersome or challenging symptoms. The vast majority of respondents (93%) reported food as a top digestive trigger, followed by stress and anxiety (67%) and lack of sleep (21%). Among dietary triggers, FODMAPs were cited as the most common trigger (69%), followed by gluten (51%) and fatty foods (42%).
For symptom management, 68% of patients found the Low FODMAP Diet (LFD) effective and 48% of patients found a gluten-free diet (GFD) effective. Other interventions, such as probiotics (27%), prescription medications (25%), over the counter medications (23%), stress management (22%) and physical exercise (22%), were also reported as effective. Fifty-four (54%) described sometimes or often seeking certified low FODMAP certified products and 75% recognized the Monash University low FODMAP certified logo. When asked to select the top 2 IBS support tools they found the most helpful, low FODMAP apps and low FODMAP certified products were cited as the most helpful. Less helpful tools included online patient education programs, meal plans, GI behavioral health tools and meal delivery services.
Still, effective symptom control remained challenging. Top patient challenges included struggling to understand symptom triggers (46%) and to find suitable food options (46%). The time and effort required for symptom management was a common challenge, with 36% citing it as a top impediment to successful symptom management. When following dietary recommendations specifically, 80% reported frustrations when trying to find suitable dining options while eating out, 51% felt socially isolated due to dietary recommendations and 42% struggled to identify suitable foods and recipes when grocery shopping. Access to RDs trained in IBS care was also a challenge, with 43% citing the cost of seeing an RD as a barrier.
Through free responses, patients shared personal experiences and challenges around day to day management of symptoms and finding access to care. Common themes included feeling frustrated and alone in their experience and needing to manage constant “ups and downs.” Patients shared that they frequently return to the same restaurants and purchase the same “safe” foods. Many also shared a common frustration around needing to manage multiple conditions at once because “it’s never just IBS.”
Survey Results: Interventions Used for IBS by Healthcare Providers
Perspectives shared by healthcare providers reflected experiences reported by patients. Bloating and distention (68%), abdominal pain (50%), and constipation (41%) were the hardest symptoms to help patients manage. Many providers also shared that it can be challenging for patients to receive an accurate IBS diagnosis. Significant challenges providers felt patients face included confusion about IBS dietary requirements (64%), social and psychological consequences of food fears (44%) and difficulties finding suitable food options (34%). When following dietary recommendations specifically, providers cited food fears and anxieties (69%), time constraints (64%) and challenges finding suitable options when dining out (46%) as top frustrations among patients.
The LFD was the most common intervention used by providers, with 84% sometimes or often recommending it for IBS or IBS-like symptoms. However, providers use the LFD in a range of ways. Thirty five (35%) percent described using it with a select group of patients who had been unable to find symptom relief through other methods, 31% found it to be great use to their patients, 14% used it often but found it delivered mixed results and 11% limited their use of it due to concerns about its complexity and restrictiveness. Many providers also mentioned using simplified approaches to the LFD, focusing on removal of the most common trigger groups such as fructans, GOS, and lactose. Other frequent recommendations included balanced eating guidelines (75%), fiber supplementation (72%), probiotics (61%), and digestive enzymes (58%).
When seeking nutrition education and resources on IBS, 76% of providers use the Monash University website and app, 68% use continuing education webinars and 39% use resources from the Academy of Nutrition and Dietetics. Other education sources, such as PubMed, non-profit organizations, conferences and peers, were used far less frequently.
The survey also explored behaviors around brand and product recommendations. Sixty-two (62%) percent of providers sometimes or often recommended low FODMAP certified brands, 59% sometimes or often recommended low FODMAP recipes and 50% sometimes or often recommended low FODMAP meal plans. The most common low FODMAP brands recommended were Fody (62%), FODZYME (60%), Schär (50%), Udi’s (37%), and Enjoy Life Foods (35%). Among those that recommend websites for low FODMAP recipes and cooking guidance, the majority shared Monash University and FODMAP Everyday’s resources (61% and 58%, respectively). Many providers also reported creating their own handouts when specific resources on a topic do not exist or are not accessible.
In open-ended questions, providers also highlighted several areas where their experience in helping patients can inform future treatment approaches. Some described the importance of emphasizing psychological counseling, stress management and strategies to support the mind-gut connection, which they noted many patients have less interest in prioritizing compared to nutrition. Many also mentioned how patients often seek a “quick fix” or are inclined towards dietary restriction. These providers stressed the need to ensure ongoing trigger reintroductions and diet personalization, especially among those with multiple FODMAP sensitivities. There was clear consensus around the importance of emphasizing a focus on long-term dietary sustainability and expansion.
Survey Discussion & Conclusion
These survey findings underscore the importance of dietary and lifestyle strategies as a cornerstone for effective IBS management. It comes as no surprise that patients frequently experience multiple and diverse symptoms. The variability in IBS triggers and challenges in understanding their roles in symptom onset highlights the need for personalized, multifaceted interventions. Healthcare providers are in tune with the challenges and care gaps their patients experience, but are not always equipped to provide patients the level of care they know they need and deserve. Providers emphasized the need for expanded multidisciplinary approaches to IBS treatment that incorporate psychological counseling and stress management alongside ongoing dietary counseling.
The LFD remains a primary intervention for managing IBS, but its complexity poses challenges for both patients and providers. Simplified approaches to the traditional LFD and better education for both patients and providers is needed. Opportunity remains for more accessible, clear, and evidence-based resources to support both patients and providers in navigating the LFD and IBS management. Future efforts can focus on improving training for providers, expanding the availability of low FODMAP certified products and ensuring patient education emphasizes the nuances around dietary restrictions and expansion.
