Introduction

Gastrointestinal (GI) conditions not only result in physical symptoms but can also negatively impact quality of life and mental health [1,2,3,4,5,6,7]. Up to a third of patients with inflammatory bowel disease (IBD) report anxiety and a quarter report symptoms of depression; [8] further, patients with disorders of gut–brain interaction report substantially lower health-related quality-of-life scores compared to healthy counterparts [8, 9]. Health care systems experience significant demands on diagnostic and financial resources in caring for these growing populations [10,11,12,13,14]. Delivering treatment that considers patients ability to effectively cope with chronic GI illness and its associated stress and quality-of-life impairment has the potential to benefit individual patients, health care providers, and health systems.

Accordingly, GI clinical practice guidelines increasingly recommend the inclusion of mental health professionals in the care of patients with GI conditions [15,16,17,18]. Participating in behavioral treatments may be beneficial for patients with disorders of gut–brain interaction and organic GI conditions; with treatment, patients may experience decreases in disease-related worry, improvements in GI symptoms and quality of life, decreased absenteeism, and shorter hospital stays [19,20,21,22,23]. However, this literature is unidirectional; missing is a discussion regarding the psychosocial factors that can impact patients’ engagement in their care both within the clinic (e.g., appointment attendance) and at home (e.g., health management). Further, patients with GI conditions and co-morbid mental health concerns infrequently receive GI behavioral health treatment [24, 25]. In addition, while provider availability has been a focus in past research [26, 27], it is also possible that care engagement is impacted by social determinants of health (SDoH). For example, people with GI conditions report lower levels of health literacy (i.e., the ability to find, understand, and use health information), limited access to medical care, financial insecurity (i.e., the degree to which a person has enough finances to meet their needs), and disparities in care [28,29,30]. While the reason for the higher rates of SDoH vulnerability remains unknown, the barriers that patients experience are likely to impact all aspects of care including appointment attendance and health management.

To expand on the existing literature, we sought to (1) better characterize barriers to engagement in appointment attendance and health management, and (2) explore individual and SDoH factors that are present in the GI patient population, and (3) identify of barriers that occur more often for patients who endorsed low health literacy and/or financial insecurity (referred to as SDoH vulnerabilities).

Materials and Methods

Recruitment

We distributed a questionnaire to adult patients of Gastroenterology and Hepatology Clinic at the Dartmouth-Hitchcock Medical Center (DHMC) from June 2022 through December 2022. Upon arrival at the GI DHMC Clinic, patients with in-person visits were invited to complete the survey at the reception desk, offered a pamphlet with a QR code linking to the digital survey, and notified of paper copies in the waiting room that were labeled with a sign. A link to the questionnaire was also embedded in the Gastroenterology and Hepatology website and was included in patients’ after visit summaries. Respondents willing to provide their email address were entered into a drawing to win one of ten $100 Amazon gift cards. This work was part of a larger quality improvement effort [31] and was reviewed by the Dartmouth Health IRB and considered non-human subjects research.

Measures

A 36-item questionnaire was developed by a multidisciplinary team including psychologists, gastroenterologists, patients, patient navigators, and administrative/scheduling staff. Team members also brought specific expertise in program redesign and reviewing content for plain language.

Demographics

Participants were asked about demographics including age, gender, race/ethnicity, employment status, and educational level.

Self-Efficacy for Managing Chronic Conditions

This 4-item Patient-Reported Outcomes Measurement Information System (PROMIS) measure was used to determine participants’ perceived confidence in their disease management goals [32]. Participants were asked to consider their abilities in managing symptoms in their daily routine, public places, and relationships, and their ability to work with their providers to manage their conditions.

Kemp Quality of Life Scale

A validated single-item measure of quality of life [33]. Participants rate their quality of life from 1 (low or very distressing) to 7 (high or great).

Patient Health Questionnaire-4 (PHQ-4)

This 4-item questionnaire screens for symptoms of anxiety and depression [34]. Scores of 3 or greater on the two-item anxiety subscale and two-item depression subscale are suggestive of possible clinical levels of anxiety or depression. Total scores for the questionnaire are characterized as “no symptoms” (0–2), “mild symptoms” (3–5), “moderate symptoms” (6–8), and “severe symptoms” (9–12). A total score of 6 or more indicates a significant elevation.

Barriers to Engagement

Participants responded to questionnaires regarding factors that prevented respondents from attending medical appointments (e.g., medical bills, video technology, transportation, housing) and factors that prevented engagement in health management (e.g., significant stress, pain, trauma, concentration). See Supplemental Materials for individual items.

Social Determinants of Health

Single Item Literacy Screener (SILS)

This item asks respondents to rate how often they need assistance when reading written material from a doctor or pharmacy [35, 36]. Possible responses are 1—Never, 2—Rarely, 3—Sometimes, 4—Often, and 5—Always. Scores greater than 2 are considered positive, indicating some difficulty with reading printed health-related material. As the SILS measures basic health-related reading comprehension, difficulties revealed through the screener reflect likely difficulties with other skills such as health care navigation and decision-making.

Financial Insecurity

Participants were asked if they had enough to meet their needs with response options being: not enough to meet needs, just enough to meet needs, and more money than needed. For the purpose of analyses, low health literacy (SILS > 2) and/or financial insecurity (not having enough money to meet one’s needs) were considered to be indicators of SDoH vulnerability.

Data Analysis

Only responses where participants navigated through 100% of the survey were included in analyses. Descriptive statistics were used including categorical variables presented as proportions and continuous variables as means with standard deviations. Relationships between variables were evaluated with Pearson correlations, chi-square tests, and/or t tests. P-values < 0.05 were considered statistically significant; however, in analyses where there were multiple comparisons, we used a family-wise Holm-Bonferroni correction to our p values. Analyses were all considered exploratory due to the quality improvement nature of the larger project, and therefore, a power analysis was not conducted.

Results

Demographics

Overall, 107 participants initiated the questionnaire and 100 (93.5%) completed it and were included herein. The mean age of the participants was 58.44 (SD = 17.31) and participants were 57.1% women and 96% white (Table 1). Sixteen percent of participants self-reported current unemployment or were on disability and 22.7% reported having a high school diploma or less. Most of the respondents (82.1%) had not utilized GI behavioral health services at the time of survey completion.

Table 1 Demographic characteristics of 100 adult patients attending an outpatient gastroenterology clinic
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Barriers to Engagement

Attending Appointments

While 28.7% of participants reported no barriers to attending appointments, 26.6% endorsed 3 or more barriers (Fig. 1). The most commonly endorsed barriers impeding respondents’ abilities to attend appointments were medical bills (28.7%), work or school schedules (26.6%), and transportation costs (22.3%). Other barriers included physical health problems (20.2%) and dislike of or inability to use video technology (17%). While many preferred or would exclusively consider online appointments (48%), others favored or would solely attend in-person appointments (32%).

Fig. 1
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Participants’ barriers to making appointments

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Health Management

While 26.1% of respondents cited no barriers impacting their health management, the majority of respondents reported multiple areas affecting them, with 40.2% citing 3 or more factors. When asked to identify factors that impact ability to manage overall health, participants most commonly endorsed difficulty with concentration (35.9%), anxiety and worries (34.0%), and pain (33.0%). Other common factors included feeling sad, low, numb, or having lost interest (27.2%), significant stress (27.2%), and difficulty with motivation (23.9%). See Fig. 2 for more information on factors influencing health management.

Fig. 2
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Factors impacting participants’ health management

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Individual Factors Impacting Engagement

Factors impacting engagement included self-efficacy, mood, and quality of life. Overall, mean self-efficacy for managing symptoms (T-score) was 42.73 (SD = 8.34), indicating below-average self-efficacy. Further, 41.9% of participants had a T-score < 40 (e.g., more than 1 standard deviation below the mean) indicative of significantly reduced self-efficacy. Looked at a different way, 30.5% of participants reported little to no confidence (a 1 or 2 on the scale) in managing symptoms during daily activities, 35.8% reported little to no confidence in keeping symptoms from interfering with relationships, 40% reported little to no confidence in their ability to manage their symptoms in a public place, and 15.1% reported little to no confidence in working with their doctor to manage symptoms. No participants screened positive for depressive symptoms only, 17.4% screened positive for anxiety symptoms only, and 19.6% screened positive for both anxiety and depressive symptoms. In addition, 27.2% of respondents scored 6 or higher, reflecting overall moderate to severe mood symptoms. Twenty-four percent of participants reported overall low quality of life.

Relationship Between Individual Factors and Barriers to Engagement

Table 2 presents correlations among age, gender, self-efficacy, mood symptoms, quality of life, number of barriers to attending appointments, and number of factors impacting health management. Both self-efficacy and quality of life were negatively associated with barriers to attending appointments (r = − 0.22, p = 0.04; r = -0.33, p = 0.001, respectively) and barriers to health management (r = − 0.46, p < 0.001; r = − 0.65, p < 0.001, respectively). In addition, mood symptom severity was positively associated with barriers to attending appointments (r = 0.42, p < 0.001) and barriers to health management (r = 0.77, p < 0.001).

Table 2 Correlations between individual factors and number of barriers to appointment attendance and health management
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Relationship Between SDoH Vulnerability and Barriers to Engagement

Regarding financial stability, 26.3% (n = 26) of patients indicated not having enough to meet their needs and 13.6% (n = 13) of participants indicated that at least sometimes, they need help reading material from their doctor or pharmacy. As 7.3% of participants endorsed both financial instability and low health literacy, a total of 32.3% of the population met our predetermined criteria for SDoH vulnerability.

This group reported significantly greater mood symptoms than the other participants in the sample (M = 4.61 vs. 2.49, p = 0.01). Compared to the rest of the sample, participants with SDoH vulnerability reported significantly more barriers to attending appointments than those without SDoH vulnerability (M = 2.52 vs. 1.22, p < 0.001, Fig. 3). Participants with SDoH vulnerability were significantly more likely to endorse physical health problems (p < 0.001; 45.2% vs 7.7%) and difficulty affording medical bills (p = 0.002; 48.4% vs 18.5%) as barriers to attendance than participants without SDoH vulnerability. Difficulty making healthcare decisions (p = 0.036; 12.9% vs 1.5%) and mental health problems (p = 0.012; 22.6% vs 4.6%) may also be different between these two groups but were not considered significant after controlling for multiple comparisons.

Fig. 3
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Participants’ barriers to making appointments for those endorsing social determinants of health vulnerabilities compared to those without vulnerabilities

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Participants with SDoH vulnerability also reported more barriers to managing their health than those who do not have SDoH vulnerability (M = 4.48 vs. 1.85, p < 0.001, Fig. 4). Participants with SDoH vulnerability were more likely than those without this additional vulnerability to endorse pain (p < 0.001; 58.1% vs 20%), mobility issues (p < 0.001; 38.7% vs 6.2%), trauma experiences (p = 0.002; 29% vs 4.6%), significant stress (p = 0.003; 45.2% vs 16.9%), and difficulty with concentration (p = 0.004; 54.8% vs 24.6%) as impactful in their overall health management. Difficulty with organization (p = 0.01; 32.3% vs 10.8%) and symptoms of depression (p = 0.014; 41.9% vs 18.5%) arose as possible differences but were not considered significant after controlling for multiple comparisons.

Fig. 4
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Factors impacting participants’ health management for those endorsing social determinants of health vulnerabilities compared to those without vulnerabilities

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Importantly, we did not find significant differences between those with and without SDoH vulnerability in several areas. Participants with SDoH vulnerability did not differ significantly from the remainder of the sample on self-efficacy for managing symptoms (p = 0.13; 58.1% vs 34.4%), endorsement of technology barriers (p = 0.27; 25.8% vs 18.5%), or preference for in-person versus telehealth appointments (p = 0.80; 55.2% vs 44.8% preferred telehealth).

Discussion

We sought to better understand individual and SDoH factors that influence engagement in GI care, including appointment attendance and health management. For the entire sample, the most cited barriers to attending appointments were concerning financial or time-related costs, followed by limitations due to physical ailments and discomfort with technology. Yet, no singular factor affected the majority of respondents’ engagement with healthcare or their own health management. Most participants reported multiple barriers with less than 30% of the sample reporting no barriers. Broadly, participants with SDoH vulnerability were more likely to endorse challenges with appointment attendance and disease management. Thus, focusing on the barriers most commonly endorsed by those with SDoH vulnerability centers the of experiences of those at the margins.

In particular, participants with SDoH vulnerability were more likely to endorse difficulty affording medical bills and physical health problems than the rest of the sample. Financial and time-related cost concerns could reflect the overall financial stability of the respondents, as 26% of participants reported not having enough money to meet their needs. Given how disorders of gut-brain interaction symptoms have been found to be correlated with lower household income [37, 38], these results highlight how economic factors can influence patients’ abilities to engage with healthcare, underscoring the importance of screening for SDoH when in the clinic to determine how to most effectively support patients (e.g., gas cards, low-cost services). Furthermore, these findings highlight the importance of more fully understanding a patient’s life circumstances when making referrals. Effective screening paired with a patient navigator or other supportive resource to obtain appropriate referral and receipt of services can help patients address barriers. Recommendations for addressing barriers to healthcare and engagement including potential screening questions are presented in Table 3.

Table 3 Barriers and solutions to attending healthcare appointments and engaging in health management
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The segment of participants with physical illness preventing appointment attendance could benefit from telehealth offerings that do not require patients to endure the physical effort and discomfort of travel as identified by findings in a recent systematic review on the benefits of telehealth [39]. However, such offerings fail to consider the substantial portion (20%) of respondents who cite limited access to telehealth due to lack of Internet, private space for a telehealth visit, or discomfort with technology, which may also be a privacy and security risk for telehealth visits [40]. Those with SDoH vulnerabilities were more likely to endorse barriers due to physical illness; however, no differences were found between those with and without SDoH vulnerabilities in telehealth as a possible barrier. Thus, telehealth may be an option for some but not all patients. Further, patients who endorsed more barriers to care also reported more overall mood symptoms, highlighting their multifaceted vulnerability. This individual variability in barriers underscores how those with multiple barriers to appointment attendance are at increased risk of lacking consistent, effective access to both GI behavioral health services and healthcare as a whole.

Participants also reported a variety of barriers to health management. As patients spend only a few hours in clinic per year, most disease management occurs at home where individuals constantly need to identify and navigate coping strategies and symptom management [41]. Given that 56% of patients reported concentration or psychosocial factors (i.e., anxiety, pain, and/or mood symptoms) impact their health management, communication tools that reinforce in-office learning and skills development are likely critical for patient engagement. Those with SDoH vulnerability were more likely to endorse pain, significant stress, and trauma experiences as well as mobility issues. Healthcare teams (e.g., providers, nurses) can discuss their impact on communication and disease self-management with patients. In our own recent program redesign work, we developed both video and written communication tools to support patient education about GI behavioral health [31]. Additional research is needed to better understand the impact of barriers to health management and develop potential interventions to improve patients’ health management, including a focus on pain management and stress.

The individual and SDoH factors endorsed by patients can inform how GI clinical practices, GI behavioral services, and healthcare systems can structure programs to reduce barriers for patients. To address these complex, overlapping barriers, it is essential that healthcare systems take a wrap-around approach, for example, offering lenient no-show policies, connecting patients with social services, and/or creating multiple ways of engaging with treatment, including use of telehealth, in-person visits, provision of evidence-based self-help resources, and/or asynchronous communication via webinars or text-based communication [31]. Multidisciplinary care visits where behavioral health visits, nutrition, and other specialties are integrated into a single visit may reduce barriers with access to care. The provision of trauma-informed care can benefit all patients, not just those at risk [42, 43]. To address the psychosocial impacts and support patients in health management, providers can screen for the overall psychosocial impacts of gastrointestinal conditions asking open-ended questions (e.g., How does your stress or mental health impact your GI condition, or vise versa?) or using validated instruments such the Inflammatory Bowel Disease Disk [44] or the Patient Assessment of Upper Gastrointestinal Disorders-Quality of Life [45]. Those patients endorsing psychosocial impacts can be referred to GI behavioral services. In addition, providers can develop comfort with neuromodulators which can impact both gastrointestinal symptoms and anxiety, sleep, and/or mood symptoms [46].

Although this project addresses an important problem of barriers to engagement with GI behavioral health services, there are several limitations that should be noted. The racial and age demographics are consistent with the wider region which the clinic serves. Given how racism impacts physical and mental health, in addition to influences on individuals experiences navigating the healthcare system, we could be missing significant barriers and relevant health management factors as the impact of racism was not directly assessed in this study [47, 48]. In addition, this survey was conducted in English only; given that patients who speak English as a second language have worse access to healthcare services compared to native English speakers, we could be missing significant barriers specific to this population [49]. In addition, those who completed the survey may be more interested in psychosocial or environmental impacts on health than those who did not complete the survey. Those who had a low health literacy may have been less likely to participate in a written survey, although the survey development team included a member with specific training in plain language. Finally, future research on this topic may benefit from investigating whether different disease groups report different GI behavioral health needs or barriers to care.

Conclusion

Adults attending outpatient gastroenterology clinic appointments identified a variety of factors that can impact both appointment attendance and overall health management. These factors are associated with self-efficacy, mood, and quality of life. Thus, there is a need to develop multiple care pathways to address patient-identified barriers to care. GI behavioral health programs may consider creating a variety of ways for patients to engage in care to support different needs, learning styles, and abilities of the patient populations.