Hospitalization Experiences and Post-traumatic Stress in Inflammatory Bowel Disease: Opportunities for Change Free

Abstract

Introduction

Medical trauma related to IBD (IBD-PTS) affects approximately 25% of patients and is associated with poor outcomes. Prior studies identify common hospitalization experiences as potentially traumatic but have not measured risk relationships for the development of IBD-PTS. We aim to investigate what aspects of hospitalizations may increase the chance of medical trauma and IBD-PTS development.

Methods

Adult patients with IBD enrolled in the IBD Partners database were recruited. Study specific questionnaires included PTSD checklist, 5th edition (PCL-5), patient experience questionnaire, and items about the patient’s most stressful hospitalization and nonhospital sources of medical trauma. Established criteria for the PCL-5 identified significant IBD-PTS symptoms (re-experiencing, avoidance, mood change, hyperarousal, global diagnosis). Select disease and treatment information was obtained from the main IBD Partners dataset. Univariate and multivariate statistics evaluated the relationships between hospitalization data and IBD-PTS.

Results

There were 639 participants with at least 1 hospitalization for IBD included. Approximately two-thirds had Crohn’s disease; most were White, non-Hispanic, female, middle-aged, and reported their IBD as being in remission. Forty percent of patients stated a hospitalization was a source of IBD-PTS. Frequent anxiety while hospitalized increased the odds of IBD-PTS 2 to 4 times; similar relationships existed for pain/pain control. Higher quality communication, information, and listening skills reduced the odds of IBD-PTS, albeit marginally.

Conclusions

Patients with IBD consistently cite hospitalizations as potential sources of medical trauma. Poorly managed anxiety and pain demonstrate the greatest chance for IBD-PTS development. Gender and racial/ethnic differences emerged for these risks. Positive interactions with the medical team may help mitigate in-hospital IBD-PTS development.

Introduction

Hospitalizations can be highly stressful experiences for patients and are potential sources of medical trauma. Medical trauma is defined as intense emotional and physical responses to pain,¹ injury,² serious illness,^3-6 medical procedures, surgery,^7,8 or frightening and unanticipated treatment experiences.^9,10 When these emotional and physical responses become chronic, a post-traumatic stress (PTS) reaction can occur. Symptoms of PTS include re-experiencing the event(s) through nightmares or flashbacks, avoiding situations that may bring on memories of the event, low mood, increased irritability, and a sense of feeling keyed up or on edge.¹¹ Unlike more traditional PTSD that generally stems from discrete, external, time-limited events (eg, combat, crime, natural disasters), medically induced PTS includes bodily interventions that cannot be escaped and, in fact, may be needed for survival. In the case of a chronic medical illness, this can result in what is termed “an enduring somatic threat.”¹²

Research into medical trauma is limited, but meta-analyses estimate 12% to 25% of the general population has medically induced PTS. Cancer and its treatment^13,14 and cardiovascular events^12,15 are most often associated with trauma, as well as intensive care unit (ICU) stays.¹⁶ However, any chronic illness has the potential for PTS development. The social-ecological model¹⁷ applied to medical trauma proposes has 4 interconnected factors: (1) the patient, including past experiences and personality traits; (2) diagnostic workup and procedures; (3) medical staff, including communication styles; and (4) the medical environment (eg, clinic, hospital, emergency department).

People living with inflammatory bowel disease (IBD) have frequent encounters with the medical system throughout the course of the disease, whether due to IBD symptoms, treatment complications, or surgery.^18,19 Hospitalizations are also common. Patients with Crohn’s disease (CD) are at a 2-to-3-fold higher risk of hospitalization than those with ulcerative colitis (UC), with 44.3% of CD patients and 21.5% of UC patients hospitalized within a 5-year period.^20,21 Rates of ICU admissions in IBD are low (less than 5%). Recent research by our group into PTS related to IBD experiences (IBD-PTS) finds approximately 25% of patients report significant PTS symptoms, with women and racial and ethnic minorities disproportionately affected.^22,23 We found in both survey data and in-depth patient interviews with IBD patients that frightening hospital experiences may be a contributor to the development of IBD-PTS.^22-24 Patients with chronic IBD-PTS report poorer quality of life, more depression, and are less likely to report their disease as being in remission.²³

Based on the prevalence of PTS in IBD, we aimed to identify potential sources of medical trauma in a large cohort of IBD patients as they relate to hospitalization experiences using the social-ecological model of medical trauma.²⁵ Specifically, we evaluated patient perceptions of being treated with respect and being listened to, having information properly explained, hospital room noise, pain and pain control, and anxiety and anxiety control as potential predictors for significant IBD-PTS symptoms.

Materials and Methods

A cross-sectional observational study was conducted. Patients registered in the IBD Partners database (https://ccfa.med.unc.edu/) were recruited via email between February and August 2020. IBD Partners is a research-dedicated national database of the Crohn’s and Colitis Foundation and University of North Carolina of over 13 000 adult IBD patients, with a robust existing data set designed to supplement additional surveys. After completing the standard questionnaires for IBD Partners, patients were asked to participate in a survey about IBD-PTS. Prestudy screening criteria included (1) living in the United States and (2) having a record of at least 1 surgery or 1 hospitalization due to IBD. Prior to completing study questions, participants were screened for pre-existing PTSD not related to IBD. Those who endorsed a non-IBD related PTSD diagnosis were excluded, and participants who endorsed a PTS diagnosis related to IBD were included. Those who agreed and met the inclusion criteria completed the following additional questionnaires.

The PTSD Checklist 5²⁶

The PTSD Checklist 5 (PCL-5) is a standardized questionnaire that measures symptoms of PTSD outlined in the Diagnostic and Statistical Manual for Mental Disorders-5th Edition (DSM-5), over the past month using the prompt, “In the past month, how much were you bothered by . . .?” The PCL-5 contains 20 items (eg, “. . . repeated, disturbing, and unwanted memories of the stressful experience?”, “. . . feeling jumpy or easily startled?”), all of which encompass the 4 DSM-5 symptom groups of PTSD. Responses are ranked on a 5-point Likert scale (0, “not at all” to 4, “extremely”). Participants were instructed to think about IBD-related traumatic events and avoid thinking about traumatic events that are not related to their disease when answering the questions. A total score of 80 is obtained by summing the 20 items. Severity scores for each DSM-5 symptom group are obtained by summing items within that given criterion (B, intrusion/re-experiencing = items 1-5; C, avoidant symptoms = items 6-7; D, negative mood/thoughts = items 8-14; E, increased arousal = items 15-20). A provisional diagnosis of PTS is made by counting the number of items in each cluster rated as “moderately” or higher and following the DSM-5 criteria: 1 B item, 1 C item, 2 D items, and 2 E items. A suggested cutoff score of >32 is indicative of a full PTSD diagnosis.

Sources of Medical Trauma

Participants were asked to indicate the source(s) of medical trauma if they endorsed any item on the PCL-5 from “a little bit” to “extremely.” The multiple selection options included hospitalization, surgery, IBD symptoms or flare-up, tests, or procedures (eg, colonoscopy, MRI), medical treatment, or other treatment (including side effects).

Hospitalization Information

After completing the IBD-PTS questions, participants were prompted to think about their most stressful or unpleasant hospital stay related to IBD. They were asked the following information about their hospitalization: years passed since hospital stay (categorized 0-3 years, 4-10 years, 11-20 years, >20 years); how many days was the hospital stay (categorized 1-3 days, 4-7 days, 8-14 days, >14 days); if any part of the hospital stay was in the ICU (dichotomized yes/no); if the participant had surgery as part of their hospital stay (dichotomized yes/no).

Patient Experiences Questionnaire²⁷

Twelve items from the original patient experiences questionnaire (PEQ) were used and included the following information: being treated with respect by nurses and physicians; being listened to/questions answered by nurses and physicians; information explained by nurses and physicians; quiet room environment; pain frequency and control; anxiety frequency and control. Each item is ranked on a 5-point Likert scale (1, “not at all” to 4, “a great deal”).

Global Hospitalization Rating

A single item rated the most stressful or frightening hospital experience for IBD on a 10-point scale (0, “terrible,” 10, “excellent”). Additional data obtained from the main IBD Partners Database included gender, age, race, ethnicity, IBD type, disease activity in the past week, disease activity in past 6 months, years since hospitalization, total number of hospitalizations, and ICU history (yes/no).

Ethical Considerations

This study was approved by the institutional review boards of Northwestern University and the University of North Carolina, as well as IBD Partners. All participants completed informed consent.

Statistical Analyses

Data were exported from IBD Partners to Microsoft Excel and subsequently imported into SPSS v. 27 for Macintosh (Chicago, IL). Total and subscale scores on the PCL-5 were computed. Preliminary data screening for normal distribution (skewness/kurtosis >2.0 or < −2.0) identified the need for nonparametric tests. Descriptive statistics are presented as percentage (frequency) for categorical variables and mean (SD) for continuous variables. Patients were coded as having significant IBD-PTS symptoms based on PCL-5 standard scoring (yes, 1; no, 0) for re-experiencing, avoidance, mood/cognition, and hyperarousal, in addition to meeting full criteria for PTSD. To identify potential confounding variables, differences between gender and IBD type for each PEQ item were assessed with independent sample t tests with effect sizes reported as Cohen’s d. Spearman’s correlation measured the relationships between the PCL-5 and age, symptom severity in the past week, total number of hospitalizations, years since hospitalization, length of stay, and each PEQ item.

Risks for Severe PTS Symptoms

Those variables found to be significantly correlated with the PCL-5 total score were entered into a series of binary logistic regression models, first for the entire study sample and then repeated for only those participants endorsing a hospitalization as a traumatic event (N = 257). Each IBD-PTS symptom group was dichotomized as having moderate to severe symptoms based on PCL-5 standard scoring (yes, 1; no, 0). The 12 items from the Patient Experiences Questionnaire along with disease activity in the past week were entered into each regression model in a forward conditional manner. Those with a P < .05 and a confidence interval that did not cross 1.0 were considered significant findings. Because differences existed by gender for each PEQ item, males and females were assessed separately.

Patients With the Poorest Hospital Experiences

To further elucidate how hospital experiences relate to IBD-PTS, the global hospitalization rating was dichotomized using a cutoff at the 50th percentile based on the US Centers for Medicare and Medicaid Services (CMS) Consumer Assessment of Health care Providers and Systems (CAHPS) metrics,²⁸ and those scoring below the 50th percentile were coded as having very poor hospital experiences. Chi square with Fisher exact (where needed) identified the proportion of patients in each group who reported significant IBD-PTS symptoms. Independent samples t test assessed differences in total PCL-5 score. A binary logistic regression model identified items considered modifiable (clinician communication/behavior, room noise, pain and anxiety control) that increased the odds a patient scored above the 50th percentile for global hospital rating. The regression model was computed for the entire study sample and then repeated for only those participants endorsing a hospitalization as a traumatic event (N = 257).

Results

Study Sample

Of the original 797 participants in our previously published study,²³ 639 (80.2%) reported at least 1 hospitalization and completed the PEQ. Demographic and clinical characteristics are in Table 1. The sample was primarily female, White, non-Hispanic, and middle aged. The small number of racial and ethnic minority patients precludes doing subgroup analyses; however, we did evaluate between-group differences for race and ethnicity for global hospital rating to attempt to evaluate IBD-PTS as it relates to health care disparities. Approximately two-thirds had CD, and most patients were either in remission or reported minimal IBD symptoms at the time of the study. No differences existed for any variables based on the timing of survey completion as it related to onset of the coronavirus 2019 (COVID-19) pandemic (previously published data).²³

Post-Traumatic Stress Symptoms

Only 6.1% of participants self-reported having an IBD-PTS diagnosis identified by a mental health professional. However, larger proportions endorsed possible sources of IBD-PTS from common IBD events. These patients tended to be younger (r = −0.2501; P < .001) and female (P = .003; d = 0.334). The average number of traumatic events was 2.54 (1.30). Half (55%) of patients reported IBD symptoms or flares as sources of trauma, followed by hospitalization (40%) and procedures or tests (30%). Medications (28%) and surgery (27%) received the least endorsements of sources of medical trauma. Logically, the greater number of IBD traumas, the more severe IBD-PTS symptoms were (r = 0.338; P < .001). Those with more traumas also ranked all aspects of their most stressful hospitalization as poorer (Range of r, −0.16 to −0.28, all P < .001).

Similar to our prior study, only 11% of patients in this cohort met the diagnostic cutoff score for IBD-PTS (PCL-5 >32); females were more likely than males to meet this criterion (P = 0.002). The most frequent moderate to severe symptom of IBD-PTS was re-experiencing (29%), followed by hyperarousal (24%), avoidance behaviors (22%), and mood/cognitive changes (22%). Females were also more likely to have higher rates of re-experiencing symptoms (P < .001) and avoidance behaviors (P < .001) than males; no differences existed for mood/cognition changes (P = .126) or hyperarousal (P = .210) by gender.

Most Stressful Hospitalization Experience

Patients with CD and UC rated hospital experiences similarly. There was relatively even distribution of the years since their most stressful hospitalization and length of stay (Table (1). Fifty-seven percent had this hospitalization in the last 10 years, and 50% had stays of 10 days or less. Only 14% reported having at least part of their stay in the ICU, and 42% had surgery during their most stressful hospitalization. Out of a maximum score of 10 (“excellent”), the average global hospital rating was 6.15 (2.58), with males rating their experience higher than females (P < .001).

No differences existed between CD and UC on any PEQ items. However, significant differences existed for males and females for all items on the PEQ (Table (2). Even though this is significant, the effect sizes were generally small apart from females having more frequent anxiety (d = 0.442). On average, participants rated each item a 3 out of 4 except for having a quiet room, anxiety frequency, pain control, and anxiety control, which were rated 2 out of 4, on average. All items on the PEQ were modestly correlated with the total score on the PCL-5. For males, the most important rating for lower IBD-PTS symptoms was for feeling like nurses listened to questions and concerns; frequent pain (r = 0.417) and anxiety (r = 0.406) were most associated with higher IBD-PTS symptoms. For females, the rating most associated with lower IBD-PTS symptoms was anxiety control (r = −0.247), whereas frequent anxiety (r = 0.452) was most associated with greater IBD-PTS.

Hospitalization Events and Post-traumatic Stress

Hospitalization events, which included length of stay, ICU use, surgery at time, and years since the most stressful hospitalization, may predict IBD-PTS severity (Table (3). No differences existed between genders except for global hospital rating; therefore, the sample was pooled for these regression analyses. The global hospital rating was an important consideration across all IBD-PTS symptom domains, with those patients rating their experience poorer approximately 1.3 times more likely to have more severe IBD-PTS when controlling for current IBD symptom severity. Patients with longer lengths of stay are 1.40 (95% CI, 1.15-1.70) times more likely to report moderate to severe re-experiencing symptoms and 1.38 (95% CI, 1.12-1.70) times more likely to experience significant avoidance behaviors. Those with a more recent hospitalization have similar odds of re-experiencing and avoidance symptoms as those with longer stays.

Overall, few differences existed for the subgroup who reported a hospitalization as a source of trauma, with similar odds ratios (ORs) found across the IBD-PTS symptom groups. The only variable that remained a predictor of avoidance behaviors was global hospital rating (OR, 0.816; 95% CI, 0.731-0.910; P < .001).

Hospitalization Experiences and Post-Traumatic Stress

Hospital experiences, which include room noise, pain and anxiety control, and staff communication style, may increase the odds of developing PTS symptoms when controlling for present IBD symptom severity and may vary by gender (Table (4). Of all ratings on the PEQ, frequent anxiety appears to be a critical consideration in the development of IBD-PTS for both genders. Specifically, females with more frequent anxiety are 2.04 (95% CI, 1.45-2.87) times more likely to meet the full criteria for IBD-PTS, 2.37 (95% CI, 1.82-3.07) times more likely to have moderate to severe re-experiencing symptoms, 2.02 (95% CI, 1.55 to 2.63) times more likely to engage in avoidance behaviors, 2.02 (95% CI, 1.53 to 2.66) times more likely to have mood or cognitive changes, and 2.15 (95% CI, 1.64-2.82) times more likely to report moderate to severe hyperarousal. For males, those with frequent anxiety are 3.98 (95% CI, 2.11-7.18) times more likely to have moderate to severe re-experiencing symptoms and 2.00 (95% CI, 1.22-3.20) times more likely to have mood or cognitive changes. Additionally, for males only, those with frequent pain are 4.08 (95% CI, 2.10-7.93) times more likely to report moderate to severe hyperarousal IBD-PTS symptoms.

Medical Staff Interactions

Proper explanation of medical information by both nurses and physicians, and physicians listening to patient concerns seem to be the only potential protective factors in the development of IBD-PTS (Table 4). For females, physicians who explained information well reduced the odds of full IBD-PTS by 1.3 (95% CI, 1.01-1.5) times and avoidance behaviors by 1.26 (95% CI, 1.01-1.44) times; as these confidence intervals are very close to 1, these results should be interpreted with some caution. For males, having nurses explain information well reduced the odds of avoidance behaviors by 1.55 (95% CI, 1.01-1.79) times. And a physician who listened to questions or concerns reduced the odds of mood or cognitive changes by 1.57 (95% CI, 1.04-1.76) times; confidence intervals are close to 1 and should be interpreted with caution.

Some differences existed for patients who endorsed a hospital stay as traumatic for PEQ items as they relate to IBD-PTS. For females, anxiety control (P = .356) and physicians explaining information (P = .246) became nonsignificant predictors of full IBD-PTS, whereas having a physician listen to concerns resulted in full IBD-PTS being 1.45 times less likely (95% CI, 1.21-1.63; P < .001). Controlling anxiety no longer predicted avoidance behaviors (P = .369), mood/cognitive changes (P = .344), nor hyperarousal (P = .054). inflammatory bowel disease activity in the past week only remained a predictor of mood/cognitive changes and became nonsignificant for all other IBD-PTS symptoms.

For males, IBD activity last week no longer predicted full IBD-PTS (P = .147) nor re-experiencing symptoms (P = .423), whereas having nurses explain information was not significant for avoidance behaviors (P = .523). Males who felt respected by physicians were 1.78 times less likely (95% CI, 1.35-1.93; P < .001) to report mood/cognition changes; anxiety frequency (P = .605) and feeling listened to by physicians (P = .281) became nonsignificant. Most notably, pain frequency was no longer a significant predictor of hyperarousal (P = .150), but feeling respected by nurses made hyperarousal symptoms 1.72 times less likely (95% CI, 1.22-1.90; P = .015).

Poorest Global Hospital Ratings and Post-traumatic Stress

For global hospitalization rating, 43% rated their most traumatic hospitalization experience below the 50th percentile (score of <7 out of 10) and were more likely to be female (P = .007), African American or multiracial (P = .011), or Hispanic (P = .007). No differences existed for having surgery at the time of hospitalization (P = .857), length of hospital stay (P = .151), ICU utilization (P = .741), or years since hospitalization (P = .368).

Patient scoring below the 50th percentile for global hospital experience reported significantly poorer experiences across the 12 PEQ items (all P < .001). Large effect sizes were found for more frequent anxiety (d = 1.00), poorer anxiety control (d = 0.944), more room noise (d = 0.936), more frequent pain (d = 0.872), and physicians less often listening to concerns (d = 0.793). The remaining effect sizes were medium (d = 0.608 to 0.755). Patients with poor hospital experiences also reported twice as high of IBD-PTS symptoms than those scoring above the 50th percentile for total PCL-5 score (16.13 ± 15.6 vs 7.56 ± 10.90; P < .001; d = 0.649) and across all symptom groups; effect sizes were medium (Figure 1).

Possible Intervention Points to Reduce Risk of IBD-PTS

To elucidate possible intervention points to reduce the risk of IBD-PTS, items on the PEQ considered modifiable (listening and answering questions, treating patient with respect, quiet room, pain and anxiety control) were entered into a binary logistic regression model. The odds that each of these scenarios may predict a patient scoring above the 50th percentile on the global hospitalization rating are reported, as this distinction is also important for IBD-PTS severity (Table 5). Feeling respected by nurses (OR, 1.95; 95% CI, 1.42-2.68; P < .001) and listened to by physicians (OR, 1.70; 95% CI, 1.34-2.15; P < .001) were associated with the greatest odds of a more positive hospital rating. Controlling pain (OR, 1.48; 95% CI, 1.17-1.89; P = .001) and anxiety (OR, 1.28; 95%: 1.08-1.51; P = .004) were also important considerations and, to a lesser extent, having a quiet room (OR, 1.24; 95% CI, 1.02-1.50; P = .030); confidence intervals for these variables approach 1 and should be interpreted with caution. Similar odds ratios existed for patients who reported a hospitalization as a source of trauma. However, anxiety control (P = .078) and having a quiet room (P = .433) became nonsignificant predictors of a more positive hospital rating.

Discussion

Chronic post-traumatic stress recently emerged as an unrecognized issue amongst patients with IBD.^22-24 The present study illuminates risk factors and intervention points during hospitalizations. Patients found hospitalization(s) highly stressful, with 40% citing a hospital experience as a source of medical trauma; this was secondary only to severe IBD symptoms. Younger patients and females appear to be more likely to report traumatic events. When interviewed, IBD patients conveyed poor communication and information exchange, especially in the context of surgery, as a major source of hospital trauma.²⁴ Prior research does find that surgeons are skilled at educating patients but may be less likely to address a patient’s emotional response or their concerns during interactions.²⁹ In studies of ICU patients and their families, 2 main reasons for PTSD symptoms (and suggested intervention points) are clinicians not listening to concerns and failure to explain treatment.^30,31 In this study, we found improved communication from physicians and nurses, including the patient feeling listened to and respected, may serve to reduce the odds of IBD-PTS, with some gender differences. Understanding communication between clinicians and hospitalized patients with IBD is a critical quality improvement area of study.

Pain control is a major objective of IBD hospitalizations. Additionally, with the opioid crisis in the United States, novel approaches to pain management including enhanced recovery are being investigated to replace older strategies. In this study, patients generally rated pain control poorly compared with other issues such as feeling respected and listened to by their care team. For male patients, poor pain control increased the odds of avoidance behaviors and meeting the full IBD-PTS diagnostic criteria, but we did not observe these relationships in females. This finding differs from previous research in motor vehicle accident victims which finds females significantly more likely to be diagnosed with PTSD and exhibit more avoidance behaviors than males.³² Studies of gender differences in pain perception and behaviors also tend to find females more prone to stronger emotional reactions to pain, making this finding unclear and in need of replication in future studies and consideration of the role of gender norms.³³

Anxiety receives considerably less attention during hospital care. This is in part due to limited psychiatric resources in and out of the hospital setting in most areas of the United States, but this is also likely due to stigmatization toward mental health issues and a prioritization of “medical” problems despite the widespread adoption of the biopsychosocial model of illness. When considering IBD-PTS, anxiety frequency and anxiety control were the universal predictors of traumatic stress for female patients, with more frequent anxiety increasing the odds of re-experiencing/intrusion symptoms up to 3-fold. However, in female patients who specifically cite a hospitalization as a traumatic event anxiety control did not seem to mitigate certain IBD-PTS symptoms. This suggests some hospital experiences may be so fear provoking even attempts to reduce anxiety may be insufficient to prevent IBD-PTS symptoms later. In prior iterations of the DSM, post-traumatic stress disorder (PTSD) was classified as an anxiety disorder; but in the current 5th edition, it is recognized as a unique constellation of symptoms. Based on our findings, feeling anxious while hospitalized combined with inattention to anxiety symptoms by medical staff likely sets the stage for the development of IBD-PTS; and when anxious feelings are combined with other factors such as poor information exchange or feeling unheard, this puts patients at increased risk for trauma. A critical consideration here is that repeated hospitalizations are common for some IBD patients, and each hospitalization may compound prior traumas, leading to complex IBD-PTS. More broadly, complex PTSD is more severe, less amenable to treatment, and increases the odds of destructive behavior (eg, drug abuse, self-harm) and suicidal ideation. Bedside assessment of anxiety with simple relaxation techniques such as diaphragmatic breathing and grounding techniques are recommended.

As was found in the original 2019 study on IBD-PTS, “global hospital rating” remained the most significant predictor of all IBD-PTS symptoms—and the only predictor for mood, cognitive changes, and hyperarousal. Modifiable factors to improve hospital rating included feeling respected and listened to by the medical team, controlling pain and anxiety, and having a quiet room. Patients rating their experience below the 50th percentile fared the worst and were more likely to be female and a member of a racial or ethnic minority group.

Racial disparities in health care experiences are well documented in the United States. For example, Black patients with IBD are more likely to be readmitted after hospitalization, have longer hospital stays, and have complications such as anemia or perianal disease.³⁴ Minority patients are also less likely to have regular access to an IBD specialist or be prescribed biologics³⁵; similar inequalities exist for female IBD patients compared with males.³⁶ An unintended effect of these gender and racial disparities may be an increased risk for IBD-PTS development from hospitalization experiences. This underscores awareness of cultural influences on the physician-patient relationship and communication³⁷ as they relate to IBD-PTS development, especially since rates of hospitalization in minority patients appear to be increasing,³⁸ and non-White persons are at higher risk for PTSD overall.^39,40

One question we cannot answer due to our data collection method is, “How does each of the main sources of trauma patients report (eg, surgery, tests/procedures, IBD symptoms, and medications) influence hospitalization experiences. It is likely patients who are hospitalized are having severe IBD symptoms, may need surgery, will undergo at least some testing, possibly take new medications, and experience side effects. Participants in this study reported approximately 2.5 traumatic events on average. These could occur in a single hospital stay or be cumulative over time, as IBD management necessitates repeat procedures, and many patients require surgery. We also cannot ascertain how any traumatic experiences that preceded the “most stressful hospital stay” influenced patient responses on the PEQ. Prospective studies of hospitalized patients can fill some of these knowledge gaps.

Limitations of this study include the recruitment methodology, in which patients self-selected their participation; this may bias results toward patients who are curious and reflective about their experiences. However, this is a very large database and likely to include a wide variety of patients. Additionally, data collected is self-reported, which makes findings more subjective and reliant on accurate reporting from each participant. Although IBD Partners is a well-established patient registry, we cannot confirm the diagnosis of IBD for our sample. We also ask people to recall events from hospitalizations that may have been more than 10 years in the past, which adds risk for recall bias or inaccuracies. However, traumatic memories are often vivid and easily remembered, which may mitigate some of this risk. Symptom activity over the past week (as relates to study participation date) remained a predictor of IBD-PTS severity, which may confound some participant responses in that active disease may lead to more negative cognitions or emotions when answering questionnaires. Finally, given the small sample of patients from various racial and ethnic backgrounds, we cannot make definitive comments about their experiences.

Conclusions

Inflammatory bowel disease is a chronic disease that can be accompanied by severe symptoms that interfere with quality of life, as well as invasive treatments that may require hospitalization. As in other chronic conditions, a close working relationship with the medical team can increase the likelihood of better outcomes for patients. The hospitalization experience, specifically, can lead patients to feel physically and emotionally vulnerable, setting the stage for PTS to develop. As such, it behooves clinicians to be mindful of the medical circumstances that may be perceived as traumatic by patients and how their own communication styles and behaviors may either mitigate or exacerbate feelings of anxiety and fear.

With prevalence rates between 25% and 30%, the unknown impacts of untreated PTS on IBD patient outcomes may be substantial. Possibilities range from known comorbidities associated with PTSD such as substance abuse^41-43 and depression with increased self-harm or suicidal ideation⁴⁴ to exacerbation of IBD via inflammatory pathways interconnected with the brain-gut-microbiome axis.^45-49 We recommend future research focus on the following to address the substantial gaps in our understanding of IBD-PTS: (1) assess comorbidities frequently found in the general PTSD population, (2) investigate the relationship between PTS and IBD pathophysiology and course, (3) evaluate interventions including both evidence-based psychotherapies and pharmacotherapies to treat IBD-PTS, (4) investigate how IBD phenotype (eg, structuring, fistulizing) may influence IBD-PTS development, and (5) quality improvement initiatives to educate clinicians who work with IBD patients about IBD-PTS, especially risk post-hospitalization. In the interim, we recommend all IBD patients be screened for PTS symptoms at their first clinical visit after discharge using the Primary Care PTSD-Screen (https://www.ptsd.va.gov/professional/assessment/screens/pc-ptsd.asp). A score >3 suggests significant symptoms and need for further evaluation.

Acknowledgments

The authors wish to acknowledge the Crohn’s and Colitis Foundation and University of North Carolina IBD Partners database and the patients within who volunteered for this study.

Funding

Digestive Health Foundation of Northwestern Medicine

Conflicts of Interest

T.T.: ownership interest in Oak Park Behavioral Medicine LLC, Consultant for Healthline. T.A.O.: advisory board and speaker for Arena Pharmaceuticals, Bohringer Ingelheim, Genentech-Roche, Hollister, Inc., and Janssen; advisory board for Takeda; speaker for Abbvie. S.B.H., J.M., E.A.M.: nothing relevant to disclose.

References