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Heidi Glynn, Antonina Mikocka-Walus, Simon R Knowles, Editorial: Hospitalization Experiences and Post-traumatic Stress in Inflammatory Bowel Disease: Opportunities for Change, Inflammatory Bowel Diseases, Volume 29, Issue 5, May 2023, Pages 839–841, https://doi.org/10.1093/ibd/izac166
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An individual’s journey with inflammatory bowel disease (IBD) involves an unrelenting relapse and remitting disease state, associated with multiple complications and comorbidities. Understandably reflecting this is the consistent finding that perceived quality of life for individuals living with IBD is lower compared with healthy controls.1 One of the most common comorbidities of IBD is psychological distress, typically in the form of anxiety and depression symptoms. Several systematic reviews have identified that rates of anxiety and depression in people living with IBD range around 19.1% to 32.1% and 21.2% to 25.2%, respectively.2,3 Not surprisingly, rates of anxiety and depression are higher in periods of active vs inactive disease states (anxiety, 66.4% vs 28.2%; depression, 34.7% vs 19.9%).3
Although the evidence for higher rates of anxiety and depression in relation to active disease states may reflect the impact of gut inflammation on psychological health, a growing body of research has demonstrated that anxiety and depression are risk factors for the clinical recurrence of IBD4–7 and even occurrence of IBD in the first place.8 Anxiety and depression in IBD cohorts have also been linked to increased hospitalization rates,9 surgeries,10 and lower compliance with treatment.11 These findings reflect evidence across multiple gastrointestinal conditions, including IBD,12,13 for the bidirectional pathways between the brain and gastrointestinal tract, commonly referred to as the brain-gut-microbiome (BGM) axis.
Even though there has been a large research focus on exploring the prevalence and implications of anxiety and depression in IBD cohorts, evidence in relation to the association with stress and post-traumatic stress disorder (PTSD) is limited. However, research has linked stress to the onset and ongoing status of functional gastrointestinal conditions.14,15 In relation to IBD, previous research demonstrates that stress increases the likelihood of relapse and is associated with disease activity.16–18 A more recent study also identified that stress increases the likelihood of relapse and can have an adverse impact across various stages of the illness.19
Due to the chronic relapsing remitting nature of IBD, management of IBD often involves invasive procedures (eg, colonoscopy), treatments with side effects (eg, medication side effects) and also major surgery (eg, colectomy). Not surprisingly, these experiences along with IBD symptoms and the unpredictable disease course are highly stressful and traumatic20,21 and, in some individuals, can lead to the development of post-traumatic stress disorder (PTSD). The association between medically related trauma and chronic illnesses has been widely acknowledged.22,23
More recently, there has been an increased focus on exploring PTSD in IBD cohorts. A recent systematic review that included 25 studies (N = 733,312) identified that the overall prevalence of PTSD in combined gastrointestinal cohorts was 36%, and 31% in inflammatory conditions (eg, IBD, gastro-esophageal reflux disease, peptic disease).24 Prevalence rates of PTSD in IBD cohorts specifically have been reported to range from 10% to 32%.25–27 Although it is clear that PTSD is common in people with IBD, a comprehensive understanding of medical trauma–related to IBD (IBD-PTS) is lacking. The study by Taft and colleagues is therefore timely and provides a significant contribution to this area of research, with important implications for gastroenterology and gastro-psychology practice. Based on a cross-sectional study involving a large US-based online sample (N = 639), the authors explored how aspects of hospitalization may relate to the development of medical trauma related to IBD. Participants completed a range of well-established scales, including the PTSD Checklist-5 (PCL-5) and Patient Experiences Questionnaire. To assess hospitalization-related experiences, the authors assessed sources of medical trauma (eg, tests or procedures, medical treatment, treatment side effects), hospital information (eg, year passed since hospital stay, number of days in hospital), patient experiences (eg, being treated with respect by nurses and physicians), along with a global hospitalization rating (eg, a single item rating the most stressful or frightening hospital experience).
Although 40% of the sample endorsed having experienced a traumatic event associated with hospitalization, only 6.1% identified as having an IBD-PTS diagnosis confirmed by a mental health professional. The majority of participants (55%) reported that the primary source of their trauma was due to IBD symptoms or flares, followed by the experience of hospitalization, and procedures or tests being sources of trauma in 40% and 30% of people, respectively. Understandably, the severity of IBD-PTS symptoms was greater with the number of medical traumas reported.
Based on a series of binary logistic regression models, significant predictors of IBD-PTS included being female (including PCL subscales re-experiencing symptoms, avoidance behaviors, mood or cognitive changes, and hyperarousal), reporting poorer global hospital ratings (including avoidance behaviors), and longer lengths of hospitalization. Protective factors linked to reducing the risk of IBD-PTS included feeling respected by nurses and having physicians who explained information well. Other factors identified as having a lesser, but still relevant, impact on reducing risk of IBD-PTS included the perception of pain and anxiety being well controlled, and staying in a quiet room while being hospitalised.
The overall PTSD prevalence rate of 11% identified in this study is similar to that reported previously (9.6%),25 however, lower than that reported in other studies included in the systematic review by Glynn, Möller, Wilding et al24 where rates ranged between 12% to 32%. Differences in these findings may be attributable to sample characteristics including participant exclusion based on nonhospital admission or surgery due to IBD and pre-existing non-IBD related PTSD. Findings are consistent with previous qualitative research that identified that IBD-related treatment can be perceived as traumatic, including challenges associated with treatment processes (eg, medications including side effects, surgical procedures).20 Possible sources of trauma in the current study did not, however, include broader illness experiences that could be present externally to hospital settings (eg, experiences associated with prediagnosis or diagnosis).20 Further, in a more recent cross-sectional study by Glynn, Apputhurai and Knowles28 involving 211 participants with IBD, 32.2% met the criteria for a probable PTSD diagnosis (68 participants). Of these 68 participants, 13% reported IBD specific trauma only, 41% reported both IBD and non IBD related trauma and 31% reported non IBD related trauma. Ten participants (15%) in this group did not identify the type of trauma experienced. This indicates an overlap with individuals who also report non-disease related trauma sources and the importance of further exploring this cumulative trauma impact.
There are a number of strengths associated with the study by Taft and colleagues that should be highlighted. These include a robust sample size and validated use of scales to further assess stressful aspects of hospital experiences (eg, Patient Experience Questionnaire, Global Hospitalization Rating). Predictors of traumatic stress were also identified (eg, anxiety frequency), and possible intervention strategies were explored to reduce the likelihood of the development of IBD-PTS (eg, treating patients with respect). Despite these strengths, the self-selection recruitment process may mean that those individuals who experienced trauma were more likely to participate. Due to the responses being self-reported, biochemical assessment of disease activity could not be conducted nor diagnostic status confirmed. Although this is a common limitation in psychological research in IBD which often, and particularly during the COVID-19 pandemic period, relies on cross-sectional survey methodologies with online recruitment. The exclusion of participants with non-IBD trauma did not allow for the evaluation of participants who experience both IBD-PTS and nonrelated trauma and in turn how this overlap influences patient outcomes. Future longitudinal research is required which includes the assessment of identified predictors of PTSD in gastrointestinal cohorts (eg, previous trauma/adverse experiences, self-reported physical status).24 Future research should also explore trauma experiences in individuals who may have no prior hospitalization or surgery experiences and also those individuals who report pre-existing non-IBD related trauma. The role of all trauma types and experiences in the relationship between disease activity and patient outcomes also warrants further investigation.
Research to date indicates that PTSD is prevalent in IBD cohorts and can be experienced across all stages of the illness journey.20,24 Post-traumatic stress disorder has been found to adversely influence disease activity26 and quality of life.28 Research highlights the importance of appropriate mental health screening and assessment in relation to PTSD. Validated trauma assessment inventories such as the Primary Care PTSD-Screen29 as recommended by Taft and colleagues are useful for initial screening. A brief guide to assist clinicians with PTSD screening and associated resources has been developed by Glynn, Möller, Wilding et al24 and provides a framework to assist with the identification of patients experiencing trauma, main triggers of trauma, referral options, treatment recommendations, and mental health resources. The study by Taft and colleagues is welcomed and provides an important contribution and further insight into the relationship between trauma and IBD. Like other studies by the authors21,25,27 and more broadly evaluating PTSD in IBD cohorts,20,24,26,28,30 further research is needed to help identify the sources and impact of IBD-PTS and also help guide the screening and treatment of PTSD.
Funding
None.
Conflicts of Interest
None declared.