Current IBS, Functional Dyspepsia Clinical Criteria Neglect Patient Experiences

Tiffany Taft, PsyD, MIS

Credit: Rome Foundation

New research suggests current clinical criteria for disorders of gut-brain interaction (DGBI), including irritable bowel syndrome (IBS) and functional dyspepsia (FD), do not accurately reflect patients’ experience with their illness.¹

Focus group responses from patients suggest the potential benefit of considering symptom bothersomeness and life interference during diagnosis rather than symptom duration and frequency. Additionally, psychological support and holistic approaches to care emerged as key messages in the focus groups.¹

DGBI, formerly known as functional gastrointestinal (GI) disorders, affect more than 40% of the global population, 2 of the most common being IBS and FD.2 The Rome Foundation, whose criteria are frequently used to diagnose IBS and FD, defines DGBI as a group of disorders classified by GI symptoms related to any combination of the following:

• Motility disturbance
• Visceral hypersensitivity
• Altered mucosal and immune function
• Altered gut microbiota
• Altered central nervous system processing

“Current guidelines recommend a diagnosis based on the frequency and duration of a characteristic symptom cluster as identified in the Rome IV criteria used worldwide today. Frequency and duration criteria were necessary for epidemiological studies and clinical trials to exclude other diagnoses,” Tiffany Taft, PsyD, MIS, associate data director at the Rome Foundation Research Institute, and colleagues wrote.¹ “However, for clinical practice, reliance on the frequency and duration of the gastrointestinal symptoms is not needed when the clinician can exclude other diseases. What is needed are patient attributions as to the meaningfulness of symptoms that drive the decision to seek healthcare and receive treatment.”

To evaluate the Rome Foundation diagnostic criteria for DGBI and validate other potentially clinically relevant constructs, investigators conducted focus groups among patients meeting Rome IV criteria for IBS, FD, or both in Australia and the United States. In addition to meeting diagnostic criteria, participants were required to speak English and be ≥ 18 years of age.¹

Participants were recruited through social media (Australia and United States), online support groups (Australia), or ResearchMatch.org (United States). Interested participants provided evidence to support their IBS and/or FD diagnosis or satisfied the Rome IV diagnostic criteria by questionnaire.¹

In total, 23 participants were interviewed in 8 focus groups completed via Zoom video conferencing from February 2023–May 2023, ranging from 45–74 minutes in length with 2 to 4 participants each who were compensated with a $25 gift voucher. Of the 23 participants, 10 were from Australia and 13 were from the US. Their mean age was 44.39 (Standard deviation [SD], 17.95; range, 26–74) years and 83% were female. Most participants had IBS (n = 13) or both IBS and FD (n = 9), while only 1 patient had FD alone.¹

Focus group sessions were led by a clinical psychologist (United States) or experienced researcher specializing in psychogastroenterology (Australia) and included a combination of structured, open-ended, and pre-determined probing questions developed a priori by the research team to explore participants' personal experiences of IBS or FD against the proposed new clinical criteria items.¹

Interview transcripts were analyzed using Template Thematic Analysis to assess how bothersome patients perceive their IBS or FD symptoms, how much IBS or FD symptoms interfere with daily life, and how bothersomeness and interference impact the decision to seek medical advice. Investigators noted 4 major themes emerged from the qualitative analysis:

Bothersomeness Should be Included in Assessments of IBS and FD

Many participants felt the frequency and duration of symptoms were not enough to reflect illness experience. They suggested symptom bothersomeness and life interference could contribute to more optimal clinical diagnostic assessment, both of which served as primary considerations for seeking medical care.¹

Additionally, most participants communicated the importance of doctors inquiring about bothersomeness and life interference in order to provide a more nuanced, holistic picture of their experience versus only a quantitative assessment of symptom frequency.¹

Patients Find Many DGBI Symptoms Bothersome

Participants described the most common IBS and FD symptoms as bothersome and/or life-interfering. Of these, pain and discomfort, fecal urgency and frequency, bloating and distention, and nausea most often prompted a person to seek medical care. Secondary symptoms, such as fatigue, acid reflux, and sleep issues had a similar effect.¹

One of the most bothersome situations described by participants was co-occurring symptoms, or when other comorbidities flared and led to challenges in identifying the source of symptoms as well as what steps to take to manage them.¹

Bothersomeness Traverses Multiple Domains of Quality of Life

Participants’ conceptualization of bothersomeness was underscored by disruptions to daily life across social, emotional, occupational, and financial life domains. The relationship between food, eating behaviors, and symptoms emerged as a key component of how bothersome IBS and FD are and how they may interfere with life.¹

Focus group responses revealed a hefty time commitment for managing IBS and FD and burdensome emotional impacts from both conditions, including symptom anxiety and stress. During care, participants indicated they want medical providers to inquire about how IBS and FD affect their psychological well-being.¹

Patients May Hesitate to Seek Medical Advice Due to Past Negative Experiences

Participants felt inclined to seek medical advice when their usual symptoms increased in severity or when novel symptoms occurred, and seeking medical care was more likely among patients who were more recently diagnosed. Seeking treatment was moderated by participants' perceptions of the usefulness of medical care, with some having low confidence in doctors or preferring to self-manage their condition with dietary regimes, over-the-counter medication, or phone apps.¹

Additionally, some participants indicated they felt invalidated by medical practitioners and described needing to ask doctors for further testing, referrals, and follow-up. Preference towards holistic treatment approaches such as naturopathy, physiotherapy, diet, acupuncture, psychotherapy, hypnotherapy, and meditation emerged.¹

Study Limitations, Significance

Investigators acknowledged multiple limitations to these findings, including selection and cultural biases as well as use of the terms “bothersome” and “interference” potentially priming participants to focus on more negative aspects of their condition.¹

“This heightened understanding of the complex and multifaceted nature of IBS and FD from the patients' perspective and experience can pave the way to more empathetic and effective healthcare practices tailored to the unique challenges these individuals face,” investigators concluded.¹ “There is a clear need for a comprehensive evaluation framework, both during diagnosis and treatment, which considers the multifaceted dimensions of DGBI.”

References

1. ^{Coitinho Y, Naude C, Marchese SH, et al. Symptom bothersomeness and life interference support Rome clinical criteria as clinically relevant indicators of DGBI. Neurogastroenterology & Motility. https://doi.org/10.1111/nmo.14936}
2. ^{The Rome Foundation. What is a Disorder of Gut-Brain Interaction (DGBI). Accessed October 11, 2024. https://theromefoundation.org/what-is-a-disorder-of-gut-brain-interaction-dgbi/}