Bilingual Perspectives of Functional Dyspepsia Management in People From Underserved Areas.

Disorders of gut-brain interaction (DGBIs) affect approximately 40% of the population ( 1 , 2 ) and are believed to be secondary to impaired afferent/efferent gut-brain signaling through the enteric nervous system ( 3 ). Clinicians struggle to manage DGBIs because their treatment is not prioritized in undergraduate, graduate, and continuing medical education ( 4 ). This can have deleterious consequences for patient quality of life (QoL) and result in patients being overevaluated with invasive tests, especially in minoritized communities ( 5 ). Although the US healthcare system is increasing focus on health inequity ( 6 ), particularly in structural gastrointestinal (GI) diseases ( 7 ), there are limited data on health inequities in highly prevalent conditions such as functional dyspepsia (FD). FD is a DGBI characterized by epigastric pain, burning, early satiety, and/or postprandial fullness affecting 7%–10% of the population ( 2 , 8 ). It serves as a disease by which broader conclusions surrounding DGBI management can be made. Namely, given the stigma associated with DGBIs, including their link with independent mental health comorbidities, physicians need to understand patients' conceptions of their DGBI management. Through the use of qualitative methods, it is now known that people from historically minoritized/marginalized communities, including those from underserved areas (UAs), have difficulty interacting with healthcare systems ( 9 – 11 ). The use of qualitative methods to assess patients' perceptions of DGBI disease management has been published previously ( 12 ). To our knowledge, no report has been made of the UA patient perspective of FD/DGBI management, particularly of those with limited English proficiency (LEP) who typically are excluded from US-based research. In this study, we address this gap in the literature through conducting English and Spanish semistructured interviews with patients diagnosed with FD from 2 community health centers serving UAs in a large US metropolitan region. We sought to understand their perspectives of FD management, hoping that this could provide a lens by which to view broader conceptions of DGBI treatment. Such work could inform the design of FD-focused and DGBI-focused interventions tailored to potentially vulnerable, historically minoritized/marginalized communities from UAs at risk of health-related disparities, including those with LEP.

We recruited adult patients from 2 community health centers serving people living within the inner urban core of a large metropolitan area in the United States. A Registered Patient Data Registry query was performed to identify patients between 2019 and 2020 with diagnoses compatible with FD. We manually reviewed charts (Figure 1 ) to ensure a FD diagnosis. We excluded patients with dyspeptic complaints that could be attributed to structural GI disease (i.e., peptic ulcer, Helicobacter pylori infection, and malignancy) and/or motility disturbance (such as gastroparesis). We also excluded individuals who did not speak English or Spanish. Patient selection process. We contacted 147 patients and administered a FD symptom screener based on Rome IV criteria to assess for continued FD activity because FD can remit spontaneously. Interviews were terminated if individuals no longer met FD criteria. If individuals met FD criteria, they were consented. Participation was incentivized by offering a gift card for completing a 30-minute semistructured interview. We obtained demographic data and the following surveys: the Patient Assessment of Gastrointestinal Symptoms to capture GI symptom burden and the Kessler Psychological Distress Scale (K10) to capture psychological distress ( 13 – 15 ). Interviews were transcribed using TranscribeMe! ( 16 ). We coded using the constant comparative method of iterative data acquisition, which allows for new data to be continuously compared with existing categories and codes. This allows for the identification of patterns and the development of emerging themes from the data ( 17 ). We organized codes in a hierarchical fashion (including principal and subsidiary codes) from which we derived themes describing participants' perspectives of FD management (see Supplementary Digital Content 1, http://links.lww.com/CTG/B265 ). Double coding of verbatim transcripts was conducted, and transcripts were reviewed for consistency and accuracy. This study received institutional review board approval (2019P000227).

A total of 26 participants were interviewed. Of these, 12 were English-speaking and 14 were Spanish-speaking individuals of LEP status. There was a high burden of biopsychosocial distress, particularly in LEP interviewees. Biopsychosocial distress included concern about food, lack of understanding about medications, transportation, history of sexual violence, and trauma. Overall, despite interviews articulating subjective severe upper GI burden, quantitative measures indicated that upper GI symptoms were mild with mild-to-moderate psychological distress (Table 1 ). Framework analysis of interview transcripts demonstrated 34 principal codes and 207 subsidiary codes (see Supplementary Digital Content 1, http://links.lww.com/CTG/B265 ). Thematic saturation was achieved (Table 2 ; see Supplementary Digital Content 2, http://links.lww.com/CTG/B265 ). Participant demographics, perspectives, and self-assessments GI, gastrointestinal; PAGI-SYM, Patient Assessment of Gastrointestinal Symptoms. High-impact quotes DGBI, disorder of gut-brain interaction; FD, functional dyspepsia. Our selection of FD to study DGBI patient conceptions in UAs was strategic—it is easy to exclude structural GI disease in FD compared with other DGBIs such as cyclic vomiting syndrome or irritable bowel syndrome. Yet, FD is known to overlap with other DGBIs ( 18 ). Participants described and associated a myriad of symptoms outside of strict FD criteria to their FD. Symptoms indicative of another DGBI included bloating/cramping, heartburn, regurgitation, vomiting, gagging, swelling of the abdomen, dysgeusia, diarrhea, and constipation. Participants related non-FD symptom severity to their FD symptoms, despite these complaints being independent of FD. For example, 1 participant was using omeprazole because she believed it was a laxative: “[the] medication I am using, it is to help me go to the bathroom, it is called ‘omeprazole,’ I take 2 a day, not always.” Other complaints were entirely outside the abdominal viscera, including musculoskeletal ones. This may suggest that FD and DGBI management require broader symptomology considerations to ensure that patients are educated on FD's specific symptoms and to confirm that non-FD conditions are being addressed. Other people reported that their symptom severity fluctuated throughout the day, was worse in the morning, or there was no clear pattern, making it “hard to tell what actually triggers [symptoms].” Some participants typically blamed their symptoms on chronic issues with digestion, allergies, endometriosis, hernias, age, and the COVID-19 pandemic, including vaccination. Interviewees reported undergoing multiple specialist evaluations to clarify their health issues due to fluctuating symptoms and severity, which they felt complicated accurate diagnosis by doctors. Despite meeting FD criteria, participants reported significant anxiety over their symptoms not resulting in a diagnosis. Participants were unsure whether they should be solely concerned with their GI tract or whether the GI symptoms were a manifestation of a larger health issue. Other interviewees mentioned that personal and family history (i.e., colon, ovarian, and breast cancer) increased their concern surrounding the etiology of their FD symptoms because “anything in that abdomen area causes [them] concern.” One individual recalled several physicians deeming further testing unnecessary, raising concerns about a potential delay in diagnosis. Effective FD management includes reducing referrals for invasive testing, but this represents a clinical challenge. Participants with FD described the inability to control or manage symptom severity, which interfered with work. This included needing to cancel work or adjusting their work schedule because of the pattern of their symptoms (e.g., if symptoms were worse later in the day, some study participants tried to schedule shifts or complete tasks earlier in the day). They reported decreased motivation to work because of the uncomfortable nature of their GI symptoms. Symptom-related work disruptions caused significant stress because participants had limited sick days, forcing them to work despite feeling unwell. Participants reported altering their relationship with food because of GI symptoms, including avoiding certain foods because they worsened symptoms, eating slower, or eating less frequently. For some, an altered relationship with food led to unintentional weight loss with the inability to “put it [weight] back on even though [they] tried,” possibly in the setting of disordered eating habits. QoL decreased secondary to reduced ability to engage in favorite cultural foods due to “miedo” (fear), diets having little variety, and “not having any energy.” Interviewees reported feeling emotionally and physically drained, causing them to have a low social battery and “prefier[en] estar solo” (prefer to be alone). This led to family members worrying about their daily care and their avoidance of activities that they “want to do with [their family and friends].” Romantic relationships were also affected because of poor body image. Lifestyle modification was another pillar of FD management—some modifications seemed to benefit well-being while others decreased QoL. Some examples of positive lifestyle changes included maintaining a healthier lifestyle through losing weight, reducing stress, exercising more, and leaning on family/faith (“[poniéndose] en las manos de Dios” [putting oneself in God's hands]). State-administered nutrition-related resources and a hospital-based food pantry helped reduce food-related anxiety and aid in obtaining food less likely to provoke FD symptoms. Negative changes included eating significantly smaller portions, less frequently, less than the desired amount, and restricting diet to the same foods to reduce symptoms. Some adjusted their meal timing to alleviate symptoms. Severe dietary modifications, including fasting, were noted in attempts to control FD symptom burden because “it is easier some days than just attempting to shove food into [their] face.” Transportation (i.e., cost, method, and hospital locations), access to food (i.e., price and food deserts), insurance (i.e., access, obtaining, and maintaining), medications (i.e., cost and lack of insurance), family care (i.e., cost, scheduling, and time), immigration status (i.e., fear of deportation), and employment status (i.e., stress about losing current job, juggling multiple jobs, or currently not employed) were all sources of stress, especially among people with LEP. Participants were especially scared of being “hit with a bill that [they] can't afford to pay” regarding medical appointments, medications, transportation, and food. In other conditions, these are well-described barriers to seeking care in those with disadvantaged social determinants of health (SDoHs). Although many people with LEP mentioned being treated with respect, some reported traumatizing experiences that deter them from seeking health care. One participant recalled being ridiculed in the emergency department for not speaking English. This led to them saying “mejor me moría en casa y no regresaba a ese hospital” (better to die at home and not return to that hospital) and feeling the need to bring a family member who speaks English because “como es ciudadana, la atienden bien, pueden tener represalias si no la atienden bien” (as she is a citizen, they treat her well, and there can be repercussions if they do not treat her well). Participants with LEP described barriers in communication rooted in the inability to speak English comfortably. Despite using interpreter services, Spanish-speaking patients felt something was lacking when treated by English-speaking providers, highlighting the challenges of language discordance in care. Participants would assign this difficulty in communication to the physician, saying “[the doctor] doesn't listen.” Consequently, patients felt that physicians were not effectively communicating their treatment plans, and interviewees left encounters thinking “a veces entiendo lo que está pasando con mi salud y que tengo que hacer para mejorarme” (sometimes I know what is happening with my health and what I need to do to be better). The lack of symptom improvement or a structured plan led to feelings of hopelessness, depression, and misery. By contrast, other participants drew paradoxical strength from the chronicity of their symptoms, saying “Estoy acostumbrándome, ¿qué voy a hacer? Me estoy acostumbrando a ellos” (I am getting used to it, what else am I going to do? I am getting used to them [symptoms]). There was patient-physician disconnect between evidence-based and expert-driven pharmacologic FD management recommendations such as with proton pump inhibition and the use of psychotropic agents. Although study participants engaged with formal health care and would presumably be amenable to neuromodulatory therapy for FD management, some participants were unsure of how medications would treat their symptoms, felt that the prescribed treatment did not address symptoms, felt that “alguno de los medicamentos…puede[n] ser que me estén causando…acidez estomacal” (one of the medications…it could be that it is what is causing…stomach acid), or were worried that the “cure was worse than the disease.” Failed FD management because of ineffective medication and frayed patient-provider therapeutic alliances resulted in interviewees avoiding evidence-based medicine entirely and seeking out “la medicina de los abuelos” (the medicine of grandparents), even if participants found that they, too, were ineffective. This would occur under the guidance of nonmedical professionals or from inspiration from cultural practices. Alternative methods included chamomile tea, ginger, different types of mint, oatmeal, and a spoonful of oil in the morning. Interviewees described negative treatment experiences that affected their care, such as providers being rushed, not explaining the reasons for or against certain tests or treatments, downplaying symptoms, and leaving patients feeling uninformed, making patients feel like physicians “don't know what's going on.” They felt physicians focused only on “treat[ing] symptoms rather than look[ing] at the big picture.” This made them feel dismissed by clinicians, as if they were crazy or wasting the doctor's time. This is particularly significant because FD and other DGBIs have been mistakenly attributed to mental health issues rather than being recognized as comorbid conditions. Although many participants trusted their health care, they suggested improvements. They recommended more affordable services, more frequent general visits and tests, and longer one-on-one personal interactions with physicians instead of them “typing on the computer and not even looking at [patients].” Participants urged doctors to focus on patients' symptoms rather than external factors and to show more respect, emphasizing that medicine “es un trabajo humanitario más que monetario” (is a humanitarian profession more than a monetary one).

DGBIs such as FD remain intractable conditions imperfectly managed by modern medicine. There is limited education for clinicians on effective communication scripts and achieving successful therapeutic alliances through shared decision making ( 19 ). Common treatment choices for FD include proton pump inhibitions and neuromodulatory agents such as tricyclic antidepressants ( 20 ); despite available therapeutic options, FD continues to severely affect the QoL of many patients and interferes with their physical, psychological, and social well-being ( 21 ). In this study, we describe multiple barriers preventing effective FD-related care for individuals living in UAs. Our research highlights the need for improved clinical decision making in FD management, particularly for patients from UAs who face additional challenges because of SDoHs that affect treatment decisions. Participants with LEP status experienced bias and a lack of cultural humility. In this bilingual cohort, objective measures of psychological distress (K10) and GI symptom severity (Patient Assessment of Gastrointestinal Symptoms) masked the functional impairment participants faced. Objective measures reported only mild-to-moderate GI symptom severity despite significant subjective disease burden noted during interviews. Individuals with DGBIs living in UAs disproportionately suffer from biopsychosocial stressors complicating their management. Unfortunately, little has been reported on UA communities' perspectives of DGBI treatment. UAs are defined as areas that have reduced resources, increased poverty, not enough primary care providers, high infant mortality, and/or high poverty rates ( 22 ). People living in UAs struggle with economic, linguistic, and/or cultural barriers when dealing with the healthcare system ( 22 ). In US society, professional attainment is intimately linked with socioeconomic status; those in UAs would be more likely to have jobs that are less likely to be remote and have a physical presence that may be difficult to navigate with chronic GI distress ( 18 ). Currently, 65 million people in the United States live in areas underserved medically ( 23 ). According to the World Health Organization, these individuals are at risk of health disparities due to SDoHs, which are “shaped by the distribution of money, power, and resources” ( 24 , 25 ). In this study, both English-speaking participants and those with LEP closely connected their challenges in achieving effective FD symptom control to various SDoHs, such as transportation issues, discrimination, language barriers, lack of workplace accommodations, and food insecurity. These negative determinants likely hinder health equity in FD. This work has several limitations, including small sample size, limited representation from other racial/ethnic minority patients, and the exclusive recruitment of patients seeking health care (vs those with FD who may not be under medical care and have different barriers). Furthermore, a gift card incentive could have introduced selection bias by attracting participants with greater financial stressors. Participants with more severe symptoms may have been motivated to accept enrollment. These drawbacks are outweighed by notable strengths, including (i) Spanish-language recruitment of a US-based cohort that is typically excluded from research, (ii) 69% of patients being from racial/ethnic minoritized communities, and (iii) a semistructured study design that allowed for rich thematic analysis likely reflecting a full perspective of those living in UAs seeking care for FD. In addition, (iv) both EP and LEP cohorts consisted mostly female participants, which reflects known gender-based disparities in FD/DGBI incidence, and (v) a broad age-based representation was achieved as well. This work highlights multiple potential clinical, educational, and research priorities for addressing DGBI management in people from UAs. These include: Improving DGBI education for both primary care clinicians and gastroenterologists. Recruiting a diverse body of physicians, especially bilingual ones, providing language/culturally concordant care. Assessing systematically flexible communication scripts for DGBI management particularly in LEP and other historically minoritized communities. Advancing what constitutes successful research in health inequity away from finding associations toward how to confront them. Performing cost-benefit analysis prioritizing reimbursement for patient-physician communication time to reduce unnecessary testing expenditure. Improving DGBI education for both primary care clinicians and gastroenterologists. Recruiting a diverse body of physicians, especially bilingual ones, providing language/culturally concordant care. Assessing systematically flexible communication scripts for DGBI management particularly in LEP and other historically minoritized communities. Advancing what constitutes successful research in health inequity away from finding associations toward how to confront them. Performing cost-benefit analysis prioritizing reimbursement for patient-physician communication time to reduce unnecessary testing expenditure. Although nonlethal, DGBIs such as FD constitute a hindrance to good QoL. People with FD from UAs persevere through additional SDoH-related burdens that may affect both FD treatment and their acceptance of it. Future research should include a socioeconomic diversity of patients with FD to identify any disparities related to these SDoH stressors in FD management. This work represents what should be a first step in investigating patients' perspectives of DGBI management given the difficulty treating such conditions.

Guarantor of the article: Christopher Vélez, MD. Specific author contributions: C.V.: conceptualization, methodology, validation, investigation, resources, data curation, manuscript drafting, and funding acquisition; I.G.F.: investigation, resources, data curation, and manuscript drafting; M.P., A.R., I.G.L., A.M., H.K., A.S.: investigation; N.B., E.B., J.B., H.B.M.: conceptualization, methodology, manuscript drafting; KS, BK: conceptualization, methodology, manuscript drafting, and funding acquisition. Financial support: This work was supported by institutional Innovation Laboratory and Department of Medicine Community Council grants, Ironwood Pharmaceuticals (C.V.), the National Institute of Diabetes and Digestive and Kidney Diseases—K23 DK131334 (H.B.M.) and K23 DK120945 (K.S.). Potential competing interests: I.G.F., M.P., A.S., A.R., E.B., H.K. have no conflicts of interest to disclose. C.V. has obtained funding from the Cystic Fibrosis Foundation, the American College of Gastroenterology, and Ironwood Pharmaceuticals. K.S. has received research support from Ardelyx and has served as a consultant to Anji, Ardelyx, GI Supply, Mahana, Restalsis, and Sanofi. B.K. has received funding from Atmo, Restalsis, Sanofi/Genzyme and served as a consultant to Takeda, Phathom, Atmo, Medtronic, Vibrant and Restalsis. Study Highlights WHAT IS KNOWN ✓ Functional dyspepsia (FD) is a common disorder of gut-brain interaction. ✓ Little has been reported about the perspectives of disorder of gut-brain interaction illness in people from underserved areas, especially in patients with limited English proficiency. WHAT IS NEW HERE ✓ Disappointment in medical care and adverse social determinants of health were found in people with FD from underserved areas. This may affect attempts at effective FD treatment, which is already difficult no matter the patient population. Trauma and violence history may exist, which may present another hurdle when treating FD. ✓ Functional dyspepsia (FD) is a common disorder of gut-brain interaction. ✓ Little has been reported about the perspectives of disorder of gut-brain interaction illness in people from underserved areas, especially in patients with limited English proficiency. ✓ Functional dyspepsia (FD) is a common disorder of gut-brain interaction. ✓ Little has been reported about the perspectives of disorder of gut-brain interaction illness in people from underserved areas, especially in patients with limited English proficiency. ✓ Disappointment in medical care and adverse social determinants of health were found in people with FD from underserved areas. This may affect attempts at effective FD treatment, which is already difficult no matter the patient population. Trauma and violence history may exist, which may present another hurdle when treating FD. ✓ Disappointment in medical care and adverse social determinants of health were found in people with FD from underserved areas. This may affect attempts at effective FD treatment, which is already difficult no matter the patient population. Trauma and violence history may exist, which may present another hurdle when treating FD.