Improving care for patients from historically minoritized and marginalized communities with disorders of gut-brain interaction

Introduction: Cases

Patient 1: A 57-year-old man with post-prandial distress variant functional dyspepsia (FD) was recommended to start nortriptyline. He previously established primary care with a physician he met at a barbershop health fair in Harlem, who referred him for specialty evaluation. Today, he presents for follow-up and reports he did not take this medication because he heard it is an antidepressant. How would you counsel him? 

Patient 2: A 61-year-old woman was previously diagnosed with mixed variant irritable bowel syndrome (IBS-M). Her symptoms have not significantly changed. Her prior workup has been reassuring and consistent with IBS-M. Despite this, the patient pushes to repeat a colonoscopy, fearful that something is being missed or that she is not being offered care because of her undocumented status. How do you respond? 

Patient 3: A 36-year-old man is followed for the management of generalized anxiety disorder and functional heartburn. He was started on low-dose amitriptyline with some benefit, but follow-up has been sporadic. On further discussion, he reports financial stressors, time barriers, and difficulty scheduling a meeting with his union representative for work accommodations as he lives in a more rural community. How do you reply?

Patient 4: A 74-year-old man with Parkinson’s disease who uses a wheelchair has functional constipation that is well controlled on his current regimen. He has never undergone colon cancer screening. He occasionally notices blood in his stool, so a colonoscopy was recommended to confirm that his hematochezia reflects functional constipation complicated by hemorrhoids. He is concerned about the bowel preparation required for a colonoscopy given his limited mobility, as his insurance does not cover assistance at home. He does not have family members to help him. How can you assist him?

Social determinants of health, health disparities, and DGBIs

Social determinants of health affect all aspects of patient care, with an increasing body of published work looking at potential disparities in organ-based and structural diseases.^1,2,3,4 However, little has been done to explore their influence on disorders of gut-brain interaction or DGBIs.

From a pathophysiologic perspective, the impact of biopsychosocial stressors is particularly relevant in patients with DGBIs. As DGBIs cannot be diagnosed with a single laboratory or endoscopic test, the patient history is of the utmost importance and physician-patient rapport is paramount in their treatment. Such rapport may be more difficult to establish in patients coming from historically marginalized and minoritized communities who may be distrustful of healthcare as an institution of (discriminatory) power. 

Potential DGBI management pitfalls in historically marginalized or minoritized communities

For racial and ethnic minorities in the United States, disparities in healthcare take on many forms. People from racial and ethnic minority communities are less likely to receive a gastroenterology consultation and those with IBS are more likely to undergo procedures as compared to White patients with IBS.⁶ Implicit bias may lead to fewer specialist referrals, and specialty care may be limited or unavailable in some areas. Patients may prefer seeing providers in their own community, with whom they share racial or ethnic identities, which could lead to fewer referrals to specialists outside of the community.

Historical discrimination contributes to a lack of trust in healthcare professionals, which may lead patients to favor more objective diagnostics such as endoscopy or view being counseled against invasive procedures as having necessary care denied. Due to a broader cultural stigma surrounding mental illness, patients may be more hesitant to utilize neuromodulators, which have historically been used for psychiatric diagnoses, as it may lead them to conflate their GI illness with mental illness.^7,8

Since DGBIs cannot be diagnosed with a single test or managed with a single treatment modality, providing excellent care for patients with DGBIs requires clear communication. For patients with limited English proficiency (LEP), access to high-quality language assistance is the foundation of comprehensive care. Interpreter use (or lack thereof) may limit the ability to obtain a complete and accurate clinical history, which can lead to fewer referrals to specialists and increased reliance on endoscopic evaluations that may not be clinically indicated.

These language barriers affect patients on many levels – in their ability to understand instructions for medication administration, preparation for procedures, and return precautions – which may ultimately lead to poorer responses to therapy or delays in care. LEP alone is broadly associated with fewer referrals for outpatient follow-up, adverse health outcomes and complications, and longer hospital stays.⁹ These disparities can be mitigated by investing in high-quality interpreter services, providing instructions and forms in multiple languages, and engaging the patient’s family and social supports according to their preferences.

People experiencing poverty (urban and rural) face challenges across multiple domains including access to healthcare, health insurance, stable housing and employment, and more. Many patients seek care at federally qualified health centers, which may face greater difficulties coordinating care with external gastroenterologists.¹⁰

Insurance barriers limit access to essential medications, tests, and procedures, and create delays in establishing care with specialists. Significant psychological stress and higher rates of comorbid anxiety and depression contribute to increased IBS severity.¹¹ Financial limitations may limit dietary choices, which can further exacerbate DGBI symptoms. Long work hours with limited flexibility may prohibit them from presenting for regular follow-ups and establishing advanced DGBI care such as with a dietitian or psychologist.

Patients with disabilities face many of the health inequities previously discussed, as well as additional challenges with physical accessibility, transportation, exclusion from education and employment, discrimination, and stigma. Higher prevalence of comorbid mental illness and higher rates of intimate partner violence and interpersonal violence all contribute to DGBI severity and challenges with access to care.^12,13 Patients with disabilities may struggle to arrive at appointments, maneuver through the building or exam room, and ultimately follow recommended care plans.

How to approach DGBIs in historically marginalized and minoritized communities

Returning to the patients from the introduction, how would you counsel each of them?

Patient 1: We can discuss with the patient how nortriptyline and other typical antidepressants can and often are used for indications other than depression. These medications modify centrally-mediated pain signaling and many patients with functional dyspepsia experience a significant benefit. It is critical to build on the rapport that was established at the community health outreach event and to explore the patient’s concerns thoroughly.

Patient 2: We would begin by inquiring about her underlying fears associated with her symptoms and seek to understand her goals for repeat intervention. We can review the risks of endoscopy and shift the focus to improving her symptoms. If we can improve her bowel habits or her pain, her desire for further interventions may lessen. 

Patient 3: It will be important to work within the realistic time and monetary constraints in this patient’s life. We can validate him and the challenges he is facing, provide positive reinforcement for the progress he has made so far, and avoid disparaging him for the aspects of the treatment plan he has been unable to follow through with. As he reported a benefit from amitriptyline, we can consider increasing his dose as a feasible next step. 

Patient 4: We can encourage the patient to discuss with his primary care physician how they may be able to coordinate an inpatient admission for colonoscopy preparation. Given his co-morbidities, this avenue will provide him dedicated support to help him adequately prep to ensure a higher quality examination and limit the need for repeat procedures.

DGBI care in historically marginalized and minoritized communities: A call to action

Understanding cultural differences and existing disparities in care is essential to improving care for patients from historically minoritized communities with DGBIs. Motivational interviewing and shared decision-making, with acknowledgment of social and cultural differences, allow us to work together with patients and their support systems to set and achieve feasible goals.¹⁴

To address known health disparities, offices can take steps to ensure the accessibility of language, forms, physical space, providers, and care teams. Providing culturally sensitive care and lowering barriers to care are the first steps to effecting meaningful change for patients with DGBIs from historically minoritized communities.

Dr. Yu is based at Division of Gastroenterology and Hepatology, Boston Medical Center and Boston University, both in Boston, Massachusetts. Dr. Dimino and Dr. Vélez are based at the Division of Gastroenterology, Massachusetts General Hospital and Harvard Medical School, both in Boston, Massachusetts. Dr. Yu, Dr. Dimino, and Dr. Vélez do not have any conflicts of interest for this article.

Additional Online Resources

Form Accessibility 

• Intake Form Guidance for Providers

• Making Your Clinic Welcoming to LGBTQ Patients

• Transgender data collection in the electronic health record: Current concepts and issues

Language Accessibility 

• Overcoming the challenges of providing care to limited English proficient patients

Physical Accessibility 

• Access to Medical Care for Individuals with Mobility Disabilities

• Making your medical office accessible