Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis 

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Unfortunately, outcomes for ASUC are suboptimal, with as many as 20-30% of patients requiring colectomy. This can be challenging for patients and highlights the need to understand patient experiences and perspectives navigating ASUC. Methods: A qualitative descriptive study utilizing semi-structured interviews was conducted to understand perspectives and experiences of patients navigating ASUC. Adult patients hospitalized for ASUC between January 2017 and March 2024 were eligible. Interviews were conducted both retrospectively among patients with a recent hospitalization and prospectively among patients within 24 hours of hospitalization for ASUC. Interviews were analyzed using a well-established hybrid inductive-deductive approach. Results: Thirty-four patients (44.2% response rate) hospitalized for ASUC were interviewed. Hybrid thematic analysis uncovered five major themes: 1) the pervasive impact of UC on QoL and mental health, 2) challenges associated with navigating uncertainty 3) prioritizing colon preservation, 4) bridging the divide between outpatient expectations and inpatient realities, and 5) balancing rapid symptom improvement with steroid safety. Our findings advocate for transparent approach to care, emphasizing the need for effective communication, education, and better alignment with patient values and expectations. Conclusions: Five key themes were identified, each with significant implications for developing a more patient-centered approach to ASUC care. These themes captured meaningful insight into patient perceptions and experiences, identifying multiple areas for actionable interventions to improve care. acute severe ulcerative colitis ulcerative colitis inflammatory bowel disease colectomy Introduction Ulcerative colitis (UC) is a chronic immune-mediated inflammatory condition associated with mucosal inflammation of colon. UC-related symptoms include fecal urgency, diarrhea, rectal bleeding, and abdominal pain. 1,2 The severity of active UC is classified into mild, moderate, or severe disease according to clinical symptoms, laboratory values, and endoscopic appearance. 3 In recent years, multiple effective treatments have been approved for UC, significantly lowering symptom severity and complications such as the need for surgery, hospitalization, and death. 4–6 Unfortunately, despite these medical advancements, patients with UC still experience high morbidity and reduced quality of life (QoL). 7 In fact, 20–30% of UC patients will experience a severe flare, known as acute severe ulcerative colitis (ASUC), during their disease course with about 20% of UC patients presenting with a ASUC as their initial presentation. 8–10 ASUC, which is defined as having ≥ 6 bloody bowel movements per day with signs of systemic toxicity, can be life-threatening and requires prompt treatment to avoid severe complications, permanent colectomy, and even mortality. 11 Considerable therapeutic advancements in UC treatment, however improvements in ASUC treatment continue to lag, with as many as 20–30% of patients with ASUC requiring colectomy within 90 days of hospitalization. 10–12 While colectomy is a life-saving procedure for patients with ASUC and long term outcomes can be positive, many patients experience operative complications as well as changes in QoL, work-productivity, mood, body image, fertility, sexual function, and bowel symptoms. 13 This reality is challenging for patients with UC who find themselves navigating ASUC and highlights the need to understand patient experiences and perspectives on ASUC including expectations for the hospitalization, preparedness for new treatment and/or surgery, and factors influencing their decision making regarding medication, surgery, and clinical trial participation. 14 To bridge this gap, we conducted qualitative semi-structured interviews with both individuals hospitalized for a severe flare of UC within the last 5 years as well as patients currently hospitalized with a severe flare of UC. Knowledge of patient experiences and perspectives is instrumental in developing patient-centered interventions that not only address poor clinical outcomes but also align with patients' values, preferences, and willingness engage in clinical research and trials. Methods Study Design We conducted a qualitative descriptive study that utilized a hybrid thematic analysis approach to understand perspectives and experiences of patients with UC navigating an ASUC flare. We conducted semi-structured interviews, allowing for a focused, yet flexible exploration of participants' experiences and perspective. A hybrid approach utilizes pre-determined codes or themes developed through clinical experience and existing literature (deductive approach), in combination with the generation of new codes and themes identified from the data obtained from the interview (inductive approach) as the starting point for thematic analysis. 15,16 Participants We included adult patients (≥ 18 years of age) who were hospitalized for ASUC. Interviews were conducted both retrospectively among patients with a recent hospitalization for ASUC between January 2017 and March 2024, and prospectively among patients within 24 hours of hospitalization for ASUC from July 2023 to March 2024. Prospective interviews among patients with a current hospitalization were ASUC were included in order obtain real-time insight into patient treatment-related decision making prior to committing to medical therapy or surgery. We used purposive sampling to include ASUC patients who underwent colectomy to enrich the diversity of perspectives and experiences. The medical charts of eligible patients were then reviewed to confirm a diagnosis of ASUC (DR and JAB) and to extract demographic, disease characteristic, and colectomy status. Eligible patients were contacted by telephone (if previously hospitalized) or approached in-person (if currently hospitalized) inviting them to participate. Some participants had been hospitalized several times during their life and comments and experiences shared by the participants were included from all of their hospitalizations. Data Collection Semi-structured interviews were conducted by DR and JAB and directed by an interview guide to facilitate discussion on key gaps in our understanding and approach to ASUC. The interview guide was developed based on available literature on ASUC and included open-ended questions and prompts designed to elicit detailed responses about a participants' experiences with hospitalization, perceptions of care, decision-making processes regarding treatment options, and perspectives on the impact of ASUC on their quality of life. See Supplemental Table 1 for domains identified and corresponding interview questions. Our interview questions were further refined through collaborative discussion and mock interviews with patient advocates with a recent hospitalization for ASUC. The interviews lasted forty-five minutes to one and a half hours. All interviews were audio-recorded and transcribed verbatim. Analytical Approach Interviews were analyzed using a well-established hybrid inductive-deductive approach, which utilizes pre-determined codes or themes developed through clinical experience and existing literature (deductive approach), in combination with the generation of new codes and themes identified from the data obtained from the interview (inductive approach). 15,16 This hybrid thematic analysis approach was guided by a deductive coding framework ( Supplemental Table 1 ) derived from the study aims, while allowing for the inductive emergence of unanticipated themes. Coders were trained in qualitative analysis techniques to ensure reliability and validity in coding and the identification of themes. All interviews were coded by at least two investigators. The investigators extracted quotes and central ideas that were relevant to the codes that were developed. The codes and extracted quotes were reviewed and combined to generate preliminary themes. With input from all investigators, the themes were reviewed and refined carefully to make the themes unambiguous. Quotes representative of the final themes were then selected as representative and memorable. This process is not linear, and steps were revisited multiple times as necessary. This study was reviewed and approved by the institutional review board. Results Participant Characteristics We identified and interviewed 34 patients (44.2% of potential participants contacted) who had been hospitalized for ASUC at the University of Michigan. Among those who participated, 17 (50%) participants were currently hospitalized for ASUC. The mean age was 40.8 \(\:\pm\:\) 13.0 years, 22 (65%) were male, 29 (85%) were White, and 32 (94%) were non-Hispanic. Participants had a mean UC duration of 11.0 \(\:\pm\:\) 9.8 years, 27 (79%) had pancolitis, 21(62%) were considered steroid-refractory on admission and the majority had multiple advanced therapy exposures prior to admission with the most common being an anti-tumor necrosis factor. Ultimately, 6 (17.6%) participants underwent colectomy for their ASUC. Thematic analysis Hybrid thematic analysis uncovered five major themes. The themes were: 1) the pervasive impact of ulcerative colitis on quality of life and mental health, 2) challenges associated with navigating uncertainty in ASUC care, 3) prioritizing colon preservation, 4) bridging the divide between outpatient expectations and inpatient realities, and 5) balancing rapid symptom improvement with steroid safety. Theme 1: The Pervasive Impact of Ulcerative Colitis on Quality of Life and Mental Health When patients were engaged and encouraged to speak about the impact of their UC on their daily life, it was evident that UC- related symptoms had a profound and pervasive impact on quality of life and mental health, often resulting in alteration of daily routines and development of multiple coping strategies. For example, many patients reported a constant awareness of nearby bathrooms and modification of their activities focused on restroom accessibility. Many patients reported missing significant life events due to their UC such as family holidays and career opportunities. These were recounted with a sense of loss and regret. For example, one participant shared: “I missed Christmas due to a severe flare” while another said “I lost my job due to UC. I was hospitalized 38 times in one year. It [UC] took years away from my life”. Patients emphasized physical debilitation, including weight loss and fecal incontinence. This was illustrated by a participant to stated “Aside from having cancer or something that is terminal, I couldn’t think of a worse disease. You miss out on a lot of things [due to UC].” Some patients described symptoms consistent with medical post-traumatic stress disorder such as negative changes in thoughts and mood associated with their prior experiences, intrusive memories, and coping behaviors to avoid reminders of their experience. Some of these coping strategies were maladaptive such as avoiding in-person medical care (especially in hospital) and delaying hospitalizations though recommended by their care team. For example, one participant told me that he “would rather do anything than come into the emergency room again” [specifically citing ineffective and experimental therapy even if it increased his risk of a bad outcome]. This avoidance led to maladaptive coping strategies, which included avoiding in-person medical care (especially when the care was to take place within a hospital) and delaying presenting to the hospital as long as possible, even when clearly necessary and recommended by their care team. One patient said, “no offense to you, but I hate doctors and I hate hospitals”. He stated, somewhat satirically, that the way he felt about going to the emergency room was encapsulated by the idiom if “I have to go back, you will never take me alive”. The mental health impact was further magnified by hospitalizations, which most patients identified as peak episodes of vulnerability. While patients were admitted, physical pain and psychological distress often culminated in a profound sense of abandonment, exacerbated by the perceived lack of emotional support from the medical system while they were admitted. One patient reminisced that while he was recently in the ED, he had intrusive “thoughts of being left there [in the ED] with no one to take care of me”. This patient also said during his most recent hospitalization, “my anxiety was through the roof…For the first time I needed anxiety meds…I am a lawyer, so stress management is the name of the game when it comes to my job”. Another patient said “I felt abandoned during my first hospitalization. My stomach was killing me to a point where I wanted to end my life.” Yet it is noteworthy that may patients identified familial support as a crucial lifeline during these difficult times. This was more pronounced for younger patients ( 40) and those with shorter duration of disease. It was also noted that patients with more robust familial/social support in the hospital experienced less distress while being hospitalized. Theme 2: The Challenges Associated with Navigating Uncertainty in ASUC Care- The Critical Role of Communication and Anticipatory Guidance during Hospitalization The dynamic and constantly evolving nature of ASUC management add layers of complexity to these already challenging encounters. Given the rapid deterioration that can occur with ASUC, treatment must be initiated immediately. This urgency contrasts starkly with the more measured approach in outpatient management, where there is greater opportunity for discussion, insurance navigation, and prolonged informed patient-centered decision-making. In addition, treatment approach and medication may be escalated, augmented, or altered from one day to another based on poorly defined and often subjective measures of response to first-line and second-line therapies. Patients described wide variability in prior hospital experiences. According to participants, their experience was influenced by the quality of communication and anticipatory guidance provided by their care team. For example, some participants reported satisfaction with their experience when they were admitted to academic medical centers staffed by UC specialists with high levels of experience. This was attributed to the multidisciplinary approach, which fostered a more comprehensive understanding of one’s condition and anticipated hospitalization trajectory. For example, one participant shared: “My hospitalization at the University was better. They checked in on me, answered all my questions, and were more supportive psychologically…I felt like things were getting swept under the rug at the other hospital.” On the other hand, participants described feeling frustration when their situation failed to improve, or their condition worsened necessitating a change in the treatment plan which often included surgery. For example, one participant said, “during my first hospitalization I felt like I didn’t know what was going on and I was left in the dark”. This was particularly challenging when gastrointestinal specialists act as consultants rather than primary treatment team necessitating multiples lines of complicated coordination and communication between services to navigate the nuances of ASUC care. Overall, participants placed a high value on understanding the day-to-day management decisions as well what markers would indicate a response to therapy and what rescue treatments could be considered in the event of an insufficient response. For example, one patient stated that “some people are better communicators than others. I liked when people talked about the greater picture rather than just the next 24 hours, like this is the plan for the day, see you tomorrow”. Patients also emphasized the value of autonomy in decision making and felt more equipped to make informed decisions when more effective communication was delivered. The desire for proactive, transparent discussions about potential outcomes, including the possibility of colectomy, was a recurring theme. Patients expressed a need for time to mentally prepare for such outcomes, which speaks to the necessity of early and direct anticipatory guidance. Hospitalizations for a ASUC were clearly identified as a critical juncture in a patient’s treatment journey, marked by heightened vulnerability and an urgent need for clarity and direction. However, providing detailed guidance is inherently difficult given the unpredictability of an ASUC clinical course and the need for rapid decision-making. Such foresight from medical teams can help patients grapple with the gravity of their situation, enabling heightened control in an otherwise tumultuous situation. Although participants conveyed their reliance on experts to guide their treatment plan, they felt “listened to” and “in control” when a more “open conversation” outlining one’s potential treatment path took place at the onset of one’s hospitalization. Patients felt more at ease when they were at an academic medical center with “UC specialists” and when their outpatient physician was engaged and involved in their inpatient care. Theme 3: Prioritizing Colon Preservation — Patients are reluctant to accept colectomy and are willing to accept significantly greater safety concerns related to medication to avoid colectomy even if the potential chances of success are exceedingly low. Within the multifaceted approach to managing ASUC, colectomy is often perceived by patients as a definitive last resort, signifying treatment failure and “giving up”. The discussions of colectomy often elicited fear and a profound emotional response with one participant recalling telling the surgeon “To leave the room unless colectomy was their only option” and other participants stating, “I would rather die [than undergo colectomy]” or that “I would not want to go on if I had to have a colectomy.” According to the participants, their intense aversion stemmed from their perceptions of post-colectomy body image, the impact on intimate relationships, limitations on activities of enjoyment, and the daunting nature of surgery itself and post-surgical recovery. Our interviews revealed a spectrum of awareness about colectomy among patients. While some participants were uninformed about the multistage process and believed an ostomy would be permanent, others, despite being informed, remained firmly opposed to the idea comparing having a J-pouch to a “permanent UC flare” because of the frequent bowel movements that follows this procedure. The sentiment did not significantly shift even with the understanding that a staged surgical approach could potentially lead to an ileostomy takedown and the restoration of a more natural bowel function that is present with the construction of a J-pouch. Participants' decision-making regarding initiation of new medications and their risk tolerance for side effects and potential complications when starting a new medication were explored with intriguing findings. Participants placed high value on efficacy and rapidity of onset, as the majority expressed an overwhelming desire for treatment that resulted in swift and effective relief, allowing a return to normalcy in life. Despite experiencing severe side effects in some cases, participants exhibited a remarkably high tolerance for medication risk, accepting the potential for serious infections and malignancies as lesser evils compared to the daily struggles with UC or perceived repercussions of a colectomy. One participant shared “theoretical risks aren’t that significant compared to the hellish reality” while another participant said “I would consider joining a study. No one wants to be the Guinea pig, but [I] would probably be [willing to be] in trials.” When faced with the option for medical therapy, even with a high likelihood of failure, participants expressed an unwavering desire to proceed. The rationale was that an attempted and failed medical management made the transition to accepting colectomy somewhat easier, as if they had exhausted all other avenues. This tolerance extended to the consideration of less-established clinical trials, higher-than-approved medication dosages, and combining or stacking multiple immunosuppressant therapies if it offered even a sliver of hope to avoid surgery (e.g. “I would try anything to keep my colon- eastern medicine, sticking medication up my butt- you name it.”) Generally, patients with a short duration of disease or patients who experienced an extended remission prior to hospitalization were more opposed to surgery, whereas patients with long-standing disease, frequent hospitalization, prolonged outpatient corticosteroid use, and multiple medication failures were more willing to accept the need for surgery regardless of their current symptom burden. Our interviews also shed light on the post-colectomy reflections of participants. Some who required colectomy, reported a retrospective appreciation for the procedure, acknowledging that their pre-surgery judgments were clouded by fear and uncertainty. With hindsight, they shared sentiments of gratitude, recognizing their colectomy as a pivotal point leading to a better quality of life than what they experienced while on medications. For example, one participant showed “If I had to do it all over again at 24 [age at which he was diagnosed with UC], I would have said give me the colectomy then. I have a better quality of life now than I ever did on the medications”. However, most participants felt unprepared for their post-operative course and underestimated the frequency and impact of common post-operative challenges (such as post-operative pain, nausea, ileus, etc.) despite reportedly having several in-depth conversations with their surgeons prior to the procedure. In addition, patients described being unprepared for the everyday challenges of living with an ostomy such as finding “appropriate clothing” and adaptations for certain activities such as exercising and playing sports. Despite the difficulties, participants consistently expressed that undergoing colectomy allowed them to return to activities that they could not perform prior to colectomy, such as opening their own business or returning to work/school. Theme 4: Bridging the Divide Between Outpatient Expectations and Inpatient Realities According to participants, a notable discord exists between outpatient management expectations and urgency of inpatient treatment for ASUC flares in the continuum of UC care. Participants described entering the hospital with the belief that outpatient therapeutic strategies would seamlessly transition to the inpatient context and that all the available medications could be applied to their inpatient management. This misalignment was further compounded by the immediate need for efficacious and rapid-acting interventions that the inpatient setting demands, a stark contrast to the deliberate, long-term management strategies typical of outpatient care. While there is an array of FDA approved medications for UC, most participants were surprised that only a select few were available inpatient. The expectation for intravenous corticosteroids to be augmented by novel therapies reflects a hope for symptom normalization that may not align with inpatient therapeutic limitations. Participants shared their frustration with the lack of available inpatient therapeutics, especially when novel efficacious therapies (such as tofacitinib or upadacitinib) may exist but not be available at many hospitals due to inpatient formulary restrictions and costs. This was illustrated by a participant who stated, “When I got admitted last time, they put me on IV steroids and after two days the guy was talking about removing my colon. To me, there has to be a dozen treatments before we get here [needing a colectomy]. Let’s go through those dozen options and be patient before we talk about a permanent surgery. We are going to cross every bridge before we get there.” Moreover, the perception of colectomy — not as a legitimate treatment modality but as a marker of therapeutic failure — exacerbated participant anxiety and frustration during their hospital admissions. This discrepancy appeared to be further exacerbated when patients had not previously engaged in any discussions about the role of colectomy in UC management and differences in the approach to care in the hospital setting. In high-acuity inpatient situations, the urgency of therapeutic decisions, necessitated by the risk of complications such as toxic megacolon and perforation, is often not fully appreciated by patients. These sudden discussions about colectomy, often caught patients off-guard, leaving patients feeling overwhelmed and unprepared to make important treatment decisions. One participant stated “My outpatient gastroenterologists tiptoed around the subject of colectomy and was much more focused on different drug options” while another participant stated “The first conversation [about colectomy] was in the hospital, and it didn’t go well. I understood that a certain amount of patients would require a colectomy, but I didn’t think that it really applied to me.” Clinician-patient relationship, cultivated in the outpatient setting, clearly played an important role in the transition to inpatient care. For many, the inclusion of a familiar and trusted outpatient gastroenterologists in hospital-based treatment discussions served as a grounding and informative source of comfort to help better understand the rationale behind acute management decisions. This generally resulted in patients being more receptive to the proposed treatment. On the other hand, many patients expressed frustration with their outpatient provider –blaming them for their hospitalization based on poor management decisions, poor communication, and selection of ineffective medications. While some patients expressed skepticism for medical treatments offered, most patients trusted the information they received from their inpatient treatment team, especially when they observed good communication between the various team members. Theme 5: Balancing rapid symptom improvement against steroid safety concerns. When discussing thoughts about corticosteroids, there was a clear dichotomy within the UC patient community. This was aptly described by one patient as a “love-hate” relationship. The rapid and effective control of inflammation and associated symptoms are often offset by the consequences of chronic use, including, but not limited to, osteoporosis, hyperglycemia, psychiatric effects, and increased susceptibility to infections. Such side effects have been appropriately described by some participants as a “necessary evil”, where the benefits of immediate relief are weighed against the risk of long-term harm. Patients appropriately recognized the acute and long-term negative effects associated with corticosteroid therapy, stating they would not take them “unless absolutely necessary”, describing steroids as “the worst medications you got”. In addition, many patients recognized that steroids only provide a short-term “Band-Aid” solution for UC, due to lack of data supporting the use of corticosteroids as a long-term maintenance strategy. One patient characterized the short-term benefit as follows: “once you taper down, it flared back up, and you end up in the hospital and you got to start all over again”. Patients generally recognized the role corticosteroids play in controlling acute flares of disease with some patients more willing to take corticosteroids as they represent a “known”, “proven”, and readily accessible entity compared to the often “scary” infusion-based biologics or “new” and “unknown” small molecules. This preference for corticosteroids was most prevalent among patients with a new diagnosis of UC, and among patients who have been able to successful manage their disease with mesalamine, intermittent and occasional corticosteroids, or did not require any therapy. However, most patients expressed enthusiasm for alternative therapies that could offer the rapid efficacy of corticosteroids without their extensive side effect profile. To patients, this represents a significant unmet need in the ASUC treatment algorithm, and patients were generally excited to participate in clinical research for agents that could replace corticosteroids in our current treatment pathways. Nevertheless, when patients were faced with a high likelihood of needing a colectomy to control symptoms and prevent complications, they expressed a preference for the most aggressive approach possible which often included the simultaneous administration of corticosteroids and advanced therapeutics. This approach reflects the imperative to maximize therapeutic efficacy while attempting to mitigate the risk of complications inherent to UC progression. Patients appeared to be most confident using corticosteroids in the hospital, despite their stated strong desire to avoid them in theory, appreciating the fact that corticosteroids have more efficacy data and represent a proven treatment compared to all other newer advanced therapies. Discussion This qualitative study captured meaningful insight into patient perceptions and experiences navigating an ASUC flare, identifying multiple areas for actionable interventions to improve care ( Table 2 ). Five key themes were identified, each with significant implications for developing more patient-centered clinical management approaches for this challenging condition. First, the pervasive impact of UC on patients' quality of life and mental health is clear. This thematic exploration underscores the necessity implementing “whole-person care” that addresses both the physical symptoms as well as the psychosocial manifestations of UC in pre-hospital, hospital, and post-hospital setting. While multiple quality improvement initiatives have been developed to improved deficiencies in quality of care of hospitalized IBD patients, these mostly focus on medical management and less on QoL and mental health. Previously, we conducted a small survey study of patients hospitalized with IBD and found that inpatient screening and management for anxiety and depression among inpatients with IBD was suboptimal. 17 Anxiety receives considerably less attention during hospital care, in part due to limited psychiatric resources, stigmatization of mental health issues, and the prioritization of “medical” problems over psychosocial needs. 18–20 Hospitalizations can be highly stressful experiences for patients and are potential sources of medical trauma. A larger survey study of 639 IBD patients with at least one hospitalization for IBD found that 25% of patients with IBD report moderate to severe symptoms of post-traumatic stress directly related to their disease experiences (IBD-PTS). 21,22 This study identified negative hospitalization experiences and frequent and uncontrolled anxiety during hospitalizations as risk factors for IBD-PTS. 18 On the other hand, good communication by the medical team was protective against IBD-PTS. 18 Numerous studies have demonstrated that depression and anxiety affect disease activity, disease relapse, and healthcare utilization, underscoring the importance of addressing this as part of their hospitalization. 23 It is especially important that mental health concerns are addressed in hospitalized patient who undergo colectomy due to frequent complications and prolonged length of stays, both of which has been identified as risk factors for anxiety, depression, and IBD-PST. 18,24 Second, effective communication and anticipatory guidance during hospitalization are crucial to help patients navigate the uncertainty that accompanies a severe flare. Overall, our study underscores the imperative of robust communication as a cornerstone of patient-centered care, particularly in the acute setting where decisions are critical, and the stakes are invariably high. Numerous studies have demonstrated the importance of effective communication in healthcare, which not only improves patient satisfaction but also improves patient health outcomes through informed decision making. 25,26 Effective communication from physicians and nurses that incorporate patient preference and allow patients to feel included, listed to, and respected may reduce the risk for anxiety, depression, and IBD-PTS. 18 To compound the issue, studies have shown large discrepancies between physicians and their patients in regards to the perceived quality of communication, patient knowledge about their medical situation, and the quality of care a patient receives in the hospital. 27,28 Third, the pronounced aversion to colectomy among patients means patients were generally willing to accept considerable risk related to therapeutic medical trials before considering surgical options. Bewtra, et al., (2014), using a discrete-choice experiment methodology, demonstrated that UC patients were willing to accept considerable risk ( > 5% 10-year risk of mortality from lymphoma or infection) from medical therapy in order to avoid an ostomy. 29 However, while the initial resistance to colectomy is strong, perspectives can shift towards increased acceptance of surgery. In stark contrast to participants who had not undergone a colectomy, those who had a colectomy retrospectively viewed colectomy positively. These insights suggest that while the initial resistance to colectomy is strong, with proper guidance, support, and nuanced understanding of benefits of colectomy for a patient with ASUC, perspectives can shift. This is consistent with a study by Brown et al. (2015), who found that 84% of patients who underwent colectomy for UC reported improved QoL compared to their status before surgery. 18 This major discrepancy stems from pre-surgery judgments being clouded by fear and uncertainty, which emphasizes the importance of proper guidance, support, and patient-centered inclusive communication as identified in a prior theme. 30 Generally, while surgeons engage in in-depth discussions about indications for surgery, therapeutic options, as well as risk-benefit tradeoffs, they were generally poor at assessing a patient’s understanding of the situation or picking up on subtle emotional and psychosocial clues. 31 The discrepancies in colectomy perceptions, represents a significant unmet need­– that needs to be better addressed by a patient’s care team. Fourth, the disparity between outpatient expectations and the reality of inpatient treatment underscores the importance of aligning patient understanding with the urgency and limited options for inpatient care. From our interviews, educational strategies in the outpatient setting are not sufficiently addressing the potential challenges inherent to the inpatient management of ASUC. This clear divide between patient knowledge and expectations are likely contributing to the anxiety, depression, and trauma ASUC patients experience while inpatient, leaving patients consistently feeling overwhelmed and unprepared to make important treatment decisions specifically around colectomy. Since 20-30% of UC patients will find themselves admitted with a severe flare during their life-time, reassessment of our outpatient educational strategies is needed. Strategies that ensure patients are thoroughly informed about the acuity and severity of ASUC, as well as the different trajectories their condition may take once hospitalization becomes necessary. This would align patient expectations with the full spectrum of UC management and prepare them for possible inpatient scenarios including the limitations of pharmacologic options and the potential for surgical intervention. Clear communication and anticipatory guidance, as emphasized in previous themes, remain crucial, especially in the transition from outpatient to inpatient care settings. The inclusion of familiar and trusting outpatient gastroenterologists in hospital-based treatment discussions could serve to bridge the outpatient-inpatient divide. Finally, balancing the rapid symptomatic relief of corticosteroids against significant adverse events, remains a significant concern for both patients and providers. This simply highlights the need to find suitable alternatives to corticosteroids that are equality or more effective, rapid acting, but have a more favorable safety profile and can be used as maintenance therapy. Currently only a handful of effective pharmacotherapy options are available for use in the hospital, with even less available to patients with prior anti-TNF exposure. While corticosteroids and cyclosporine are effective for induction, both are ineffective for maintenance therapy and are associated with significant adverse events. 3 Novel, targeted small molecules, such as tofacitinib or upadacitinib, are well suited to replace corticosteroids as first-line therapy. 32–35 Singh, et al., conducted a randomized control trial comparing eight weeks of tofacitinib to prednisolone and found no difference in efficacy or safety. 36 Other studies have explored restricting corticosteroids to the hospital setting and rapidly discontinuing these once rescue therapy has been initiated. 37 This strategy aligns with the opinions of the patients in our study, who explicitly expressed a strong desire to avoid corticosteroids unless absolutely necessary. As outlined in prior themes, patients are willing to engage in experimental treatment strategies if there is a potential for a lower risk colectomy. To mitigate the challenges inherent in the management of ASUC and enhance patient experience, our analysis points toward the need to develop and deploy a multifaceted intervention that addresses both medical and psychosocial issues within and beyond the hospital setting. 38–41 Table 2 outlines some areas for improvement as well as some proposed actional interventions based on the findings our study. These interventions would complement the medical management and serve to optimize care and outcomes for patients with ASUC. Creating patient-centered materials such as detailed pamphlets, diagrams, and illustrations can simplify the complexity of ASUC care. 42,43 These resources would not only delineate the stepwise approach to management but also clearly define what constitutes a therapeutic response versus failure. For instance, visual aids could illustrate the timeline of expected outcomes following initiation of first-line therapy, the decision points for considering rescue treatments, and the potential pathways leading to surgery. Furthermore, standardized communication protocols could be established to guide healthcare providers in offering more concrete anticipatory guidance. This would include setting realistic timeframes for each phase of treatment and recovery, thereby managing expectations and reducing the anxiety associated with the uncertainty of ASUC progression. In addition, incorporating input from a patients outpatient gastroenterologist and connecting hospitalized patients with support from peers who have experiential knowledge of the specific situation, could be a potential means of improving patient knowledge and eliminating uncertainty. 44,45 These interventions should aim to provide patients with a clearer understanding of their disease process and foster a collaborative environment where decision-making is shared. By doing so, patients can become active participants in their care, even in the fast-paced and often unpredictable context of ASUC management. 45,46 The strength of our study lies in the robust, patient-centered qualitative methodology, enabling a deep understanding of the UC patient journey through both deductive and inductive thematic analysis. Nevertheless, the limitations include the potential for selection bias and the single-center study design, which may not fully capture the diversity of experiences across different healthcare settings. In conclusion, this study highlights the nuanced experiences of UC patients and the complexities of managing ASUC flares. Our findings advocate for a patient-centered, transparent approach to care, emphasizing the need for effective communication, education, and reevaluation of clinical practices to align with patient values and expectations. Abbreviations Acute Severe Ulcerative Colitis (ASUC); Quality of life (QoL); Ulcerative colitis (UC); international review board (IRB) Declarations PDRH received consulting fees from AbbVie, Amgen, Genentech, JBR Pharma and Lycera. All other authors report no disclosures. Author Contributions: Study concept and design: JAB, DR, PDRH, SB Acquisition: JAB, DR Analysis, or interpretation of data: JAB, DR, PK, CL, QS, MD Drafting of the manuscript: JAB, DR Critical revision of the manuscript: All authors Final approval: All authors References Chang JT, Hays RD, Shekelle PG, et al. Patients’ global ratings of their health care are not associated with the technical quality of their care. Ann Intern Med . 2006;144(9):665-672. doi:10.7326/0003-4819-144-9-200605020-00010 Bartlett EE, Grayson M, Barker R, Levine DM, Golden A, Libber S. The effects of physician communications skills on patient satisfaction; recall, and adherence. J Chronic Dis . 1984;37(9-10):755-764. doi:10.1016/0021-9681(84)90044-4 Rubin DT, Ananthakrishnan AN, Siegel CA, Sauer BG, Long MD. ACG Clinical Guideline: Ulcerative Colitis in Adults. 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Semistructured interviewing in primary care research: a balance of relationship and rigour. Fam Med Community Health . 2019;7(2):e000057. doi:10.1136/fmch-2018-000057 Jordan A, Ahmed M, Saunyama Q, Kinnucan JA, Riehl M, Berinstein J. Su1792 SUBOPTIMAL SCREENING RATES OF ANXIETY AND DEPRESSION FOR INPATIENTS WITH INFLAMMATORY BOWEL DISEASE. Gastroenterology . 2023;164(6):S-684. doi:10.1016/S0016-5085(23)02590-8 Taft TH, McGarva J, Omprakash TA, et al. Hospitalization Experiences and Post-traumatic Stress in Inflammatory Bowel Disease: Opportunities for Change. Inflammatory Bowel Diseases . 2023;29(5):675-683. doi:10.1093/ibd/izac148 Szigethy EM, Allen JI, Reiss M, et al. White Paper AGA: The Impact of Mental and Psychosocial Factors on the Care of Patients With Inflammatory Bowel Disease. Clin Gastroenterol Hepatol . 2017;15(7):986-997. doi:10.1016/j.cgh.2017.02.037 Crowley RA, Kirschner N, Health and Public Policy Committee of the American College of Physicians. The integration of care for mental health, substance abuse, and other behavioral health conditions into primary care: executive summary of an American College of Physicians position paper. Ann Intern Med . 2015;163(4):298-299. doi:10.7326/M15-0510 Taft TH, Bedell A, Craven MR, Guadagnoli L, Quinton S, Hanauer SB. Initial Assessment of Post-traumatic Stress in a US Cohort of Inflammatory Bowel Disease Patients. Inflamm Bowel Dis . 2019;25(9):1577-1585. doi:10.1093/ibd/izz032 Taft TH, Quinton S, Jedel S, Simons M, Mutlu EA, Hanauer SB. Posttraumatic Stress in Patients With Inflammatory Bowel Disease: Prevalence and Relationships to Patient-Reported Outcomes. Inflamm Bowel Dis . 2022;28(5):710-719. doi:10.1093/ibd/izab152 Eugenicos MP, Ferreira NB. Psychological factors associated with inflammatory bowel disease. Br Med Bull . 2021;138(1):16-28. doi:10.1093/bmb/ldab010 Ananthakrishnan AN, Gainer VS, Cai T, et al. Similar risk of Depression and Anxiety following surgery or hospitalization for Crohn’s disease and Ulcerative colitis. Am J Gastroenterol . 2013;108(4):594-601. doi:10.1038/ajg.2012.471 Karimi N, Moore AR, Lukin A, Kanazaki R, Williams AJ, Connor S. Clinical communication in inflammatory bowel disease: a systematic literature review protocol. BMJ Open . 2020;10(11):e039503. doi:10.1136/bmjopen-2020-039503 Heisler M, Bouknight RR, Hayward RA, Smith DM, Kerr EA. The relative importance of physician communication, participatory decision making, and patient understanding in diabetes self-management. J Gen Intern Med . 2002;17(4):243-252. doi:10.1046/j.1525-1497.2002.10905.x Olson DP, Windish DM. Communication Discrepancies Between Physicians and Hospitalized Patients. Archives of Internal Medicine . 2010;170(15):1302-1307. doi:10.1001/archinternmed.2010.239 Al Khoury A, Balram B, Bessissow T, et al. Patient Perspectives and Expectations in Inflammatory Bowel Disease: A Systematic Review. Dig Dis Sci . 2022;67(6):1956-1974. doi:10.1007/s10620-021-07025-y Bewtra M, Kilambi V, Fairchild AO, Siegel CA, Lewis JD, Johnson FR. Patient preferences for surgical versus medical therapy for ulcerative colitis. Inflamm Bowel Dis . 2014;20(1):103-114. doi:10.1097/01.MIB.0000437498.14804.50 Pothemont K, Quinton S, Jayoushe M, et al. Patient Perspectives on Medical Trauma Related to Inflammatory Bowel Disease. J Clin Psychol Med Settings . 2022;29(3):596-607. doi:10.1007/s10880-021-09805-0 Levinson W, Hudak P, Tricco AC. A systematic review of surgeon-patient communication: strengths and opportunities for improvement. Patient Educ Couns . 2013;93(1):3-17. doi:10.1016/j.pec.2013.03.023 Berinstein JA, Steiner CA, Regal RE, et al. Efficacy of Induction Therapy With High-Intensity Tofacitinib in 4 Patients With Acute Severe Ulcerative Colitis. Clin Gastroenterol Hepatol . 2019;17(5):988-990.e1. doi:10.1016/j.cgh.2018.11.022 Berinstein JA, Sheehan JL, Dias M, et al. Tofacitinib for Biologic-Experienced Hospitalized Patients With Acute Severe Ulcerative Colitis: A Retrospective Case-Control Study. Clin Gastroenterol Hepatol . 2021;19(10):2112-2120.e1. doi:10.1016/j.cgh.2021.05.038 Berinstein JA, Karl T, Patel A, et al. Effectiveness of Upadacitinib for Patients with Acute Severe Ulcerative Colitis: A Multi-Center Experience. Am J Gastroenterol . Published online January 26, 2024. doi:10.14309/ajg.0000000000002674 Singh A, Goyal MK, Midha V, et al. Tofacitinib in acute severe ulcerative colitis (TACOS): A randomized controlled trial: Tofacitinib in ASUC. Am J Gastroenterol . Published online December 22, 2023. doi:10.14309/ajg.0000000000002635 Singh A, Midha V, Kaur K, et al. Tofacitinib Versus Oral Prednisolone for Induction of Remission in Moderately Active Ulcerative Colitis [ORCHID]: A Prospective, Open-Label, Randomized, Pilot Study. J Crohns Colitis . 2024;18(2):300-307. doi:10.1093/ecco-jcc/jjad153 Tarabar D, El Jurdi K, Traboulsi C, et al. A Prospective Trial with Long Term Follow-up of Patients With Severe, Steroid-Resistant Ulcerative Colitis Who Received Induction Therapy With Cyclosporine and Were Maintained With Vedolizumab. Inflamm Bowel Dis . 2022;28(10):1549-1554. doi:10.1093/ibd/izab328 Berinstein JA, Cohen-Mekelburg SA, Greenberg GM, et al. A Care Coordination Intervention Improves Symptoms But Not Charges in High-Risk Patients With Inflammatory Bowel Disease. Clin Gastroenterol Hepatol . 2022;20(5):1029-1038.e9. doi:10.1016/j.cgh.2021.08.034 Moser NL, Plante WA, LeLeiko NS, Lobato DJ. Integrating behavioral health services into pediatric gastroenterology: A model of an integrated health care program. Clinical Practice in Pediatric Psychology . 2014;2(1):1-12. doi:10.1037/cpp0000046 Regueiro MD, McAnallen SE, Greer JB, Perkins SE, Ramalingam S, Szigethy E. The Inflammatory Bowel Disease Specialty Medical Home: A New Model of Patient-centered Care. Inflamm Bowel Dis . 2016;22(8):1971-1980. doi:10.1097/MIB.0000000000000819 Mikocka-Walus AA, Andrews JM, Bernstein CN, et al. Integrated models of care in managing inflammatory bowel disease: a discussion. Inflamm Bowel Dis . 2012;18(8):1582-1587. doi:10.1002/ibd.22877 Gordon M, Sinopoulou V, Ibrahim U, Abdulshafea M, Bracewell K, Akobeng AK. Patient education interventions for the management of inflammatory bowel disease. Cochrane Database Syst Rev . 2023;5(5):CD013854. doi:10.1002/14651858.CD013854.pub2 Norouzkhani N, Bahari A, Faramarzi M, Shokri Shirvani J, Eslami S, Tabesh H. Development and Validation of an Educational Book on Self-Management in Inflammatory Bowel Disease Based on Patient Preferences and Expert Opinions: A Methodological Study. J Clin Med . 2023;12(24):7659. doi:10.3390/jcm12247659 Adriano A, Thompson DM, McMullan C, et al. Peer support for carers and patients with inflammatory bowel disease: a systematic review. Syst Rev . 2022;11(1):200. doi:10.1186/s13643-022-02064-6 Hashash JG, Sigal R, Wein-Levy P, Szigethy EM, Merusi JJ, Regueiro MD. Inflammatory Bowel Disease (IBD) Connect: A Novel Volunteer Program for Hospitalized Patients with IBD and Their Families. Inflamm Bowel Dis . 2016;22(11):2748-2753. doi:10.1097/MIB.0000000000000952 Tables Table 1 Overall N = 34 Prior Hospitalization N = 17 Current Hospitalization N = 17 Age, years 40.8 (13.9) 36.5 (11.8) 45.0 (14.9) Sex Male 22 (65%) 10 (59%) 12 (71%) Female 12 (35%) 7 (41%) 5 (29%) Race White 29 (85%) 15 (88%) 14 (82%) Black 0 (0%) 0 (0%) 0 (0%) Other 5 (15%) 2 (12%) 3 (18%) Ethnicity Non-Hispanic 32 (94%) 16 (94%) 16 (94%) Hispanic 2 (5.9%) 1 (5.9%) 1 (5.9%) Duration IBD, years 11.0 (9.8) 9.8 (8.7) 12.2 (10.9) Distribution of Disease Proctitis 2 (5.9%) 1 (5.9%) 1 (5.9%) Left-sided Colitis 5 (15%) 1 (5.9%) 4 (24%) Pancolitis 27 (79%) 15 (88%) 12 (71%) Corticosteroid Dependent 21 (62%) 8 (47%) 13 (76%) Prior Advanced Therapy Use 29 (85%) 13 (76%) 16 (94%) Number Prior Advanced Therapy Exposures 1 Advanced Therapy 11 (32%) 4 (24%) 7 (41%) 2 Advanced Therapy 9 (26%) 3 (18%) 6 (35%) 3 Advanced Therapy 8 (24%) 5 (29%) 3 (18%) 4 Advanced Therapy 0 (0%) 0 (0%) 0 (0%) 5 Advanced Therapy 1 (2.9%) 1 (5.9%) 0 (0%) Prior Infliximab Exposure 22 (65%) 10 (59%) 12 (71%) Prior Adalimumab Exposure 12 (35%) 7 (41%) 5 (29%) Prior Ustekinumab Exposure 4 (12%) 1 (5.9%) 3 (18%) Prior Vedolizumab Exposure 14 (41%) 7 (41%) 7 (41%) Prior Tofacitinib Exposure 5 (15%) 4 (24%) 1 (5.9%) Prior Upadacitinib Exposure 1 (2.9%) 1 (5.9%) 0 (0%) Truelove and Witt's Criteria Met 26 (76%) 11 (65%) 15 (88%) Number of Bloody Bowel Movements 9.7 (5.7) 9.0 (7.3) 10.3 (4.1) Length of Stay, days 8.4 (9.2) 10.9 (12.1) 6.0 (3.7) Colectomy Status 6 (18%) 5 (29%) 1 (5.9%) Time From Discharge to Interview, years 0.8 (1.9) 2.3 (1.7) NA Continuous variables are presented as mean (standard deviation). Categorical variables are presented as proportion (percentage) Table 2: Actionable interventions to improve acute severe ulcerative colitis (ASUC) care based on patient perceptions and experiences that were identified in our study Identified Areas for Improvement Proposed Actionable Interventions Impaired quality of life and mental health due to ulcerative colitis Develop comprehensive inpatient support programs encompassing mental health and quality of life assessments. Lack of communication and guidance on clinical course Implement standardized protocols for inpatient education and create pathways for continuous outpatient-inpatient dialogue. Develop detailed visual aids and pamphlets. Misaligned expectations for inpatient care Educate patients in the outpatient setting about the nature of inpatient care and potential for escalated treatment options including colectomy to avoid ASUC-related complications. Perception of colectomy Facilitate honest, patient-centered discussions on risks and benefits of colectomy. Introduce decision aids for surgery, emphasizing the pros and cons, and provide preoperative counseling sessions. Discuss potential for colectomy as an outpatient and early in a patient’s inpatient treatment course. Implement peer support interventions by connecting hospitalized patients to other UC patients who have experiential knowledge and personal prior experience with an admission for ASUC. Negative perceptions of steroids Promote the use of steroid-sparing strategies and educate patients. Support clinical trials that explore steroid-sparing or steroid-minimizing treatment strategies for ASUC ASUC: Acute severe ulcerative colitis; UC: ulcerative colitis; Additional Declarations No competing interests reported. Supplementary Files SupplementalTable.docx Cite Share Download PDF Status: Published Journal Publication published 18 Sep, 2024 Read the published version in Digestive Diseases and Sciences → Version 1 posted Editorial decision: Revision requested 23 Aug, 2024 Reviews received at journal 22 Aug, 2024 Reviewers agreed at journal 12 Aug, 2024 Reviewers invited by journal 16 Jul, 2024 Editor assigned by journal 15 Jul, 2024 Submission checks completed at journal 11 Jul, 2024 First submitted to journal 08 Jul, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. We do this by developing innovative software and high quality services for the global research community. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4707080","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":334468371,"identity":"f7adbcef-2a43-47bc-b56d-b89a2c454720","order_by":0,"name":"Dustin 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Arbor","correspondingAuthor":false,"prefix":"","firstName":"Jeffrey","middleName":"","lastName":"Berinstein","suffix":""}],"badges":[],"createdAt":"2024-07-08 16:51:31","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4707080/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4707080/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1007/s10620-024-08633-0","type":"published","date":"2024-09-18T15:57:03+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":65105235,"identity":"41bed683-103c-46e6-884e-d4075f628fa9","added_by":"auto","created_at":"2024-09-23 16:14:40","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":773298,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4707080/v1/e276fe87-e880-40a6-b6ce-1e07a28d8ae8.pdf"},{"id":61756296,"identity":"07a07e2d-f5b8-4b92-8e83-620755b82c87","added_by":"auto","created_at":"2024-08-05 08:39:04","extension":"docx","order_by":4,"title":"","display":"","copyAsset":false,"role":"supplement","size":17277,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementalTable.docx","url":"https://assets-eu.researchsquare.com/files/rs-4707080/v1/e78898cf33f9b25b9349e829.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis ","fulltext":[{"header":"Introduction","content":"\u003cp\u003eUlcerative colitis (UC) is a chronic immune-mediated inflammatory condition associated with mucosal inflammation of colon. UC-related symptoms include fecal urgency, diarrhea, rectal bleeding, and abdominal pain.\u003csup\u003e1,2\u003c/sup\u003e The severity of active UC is classified into mild, moderate, or severe disease according to clinical symptoms, laboratory values, and endoscopic appearance.\u003csup\u003e3\u003c/sup\u003e In recent years, multiple effective treatments have been approved for UC, significantly lowering symptom severity and complications such as the need for surgery, hospitalization, and death.\u003csup\u003e4\u0026ndash;6\u003c/sup\u003e Unfortunately, despite these medical advancements, patients with UC still experience high morbidity and reduced quality of life (QoL).\u003csup\u003e7\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eIn fact, 20\u0026ndash;30% of UC patients will experience a severe flare, known as acute severe ulcerative colitis (ASUC), during their disease course with about 20% of UC patients presenting with a ASUC as their initial presentation.\u003csup\u003e8\u0026ndash;10\u003c/sup\u003e ASUC, which is defined as having\u0026thinsp;\u0026ge;\u0026thinsp;6 bloody bowel movements per day with signs of systemic toxicity, can be life-threatening and requires prompt treatment to avoid severe complications, permanent colectomy, and even mortality.\u003csup\u003e11\u003c/sup\u003e Considerable therapeutic advancements in UC treatment, however improvements in ASUC treatment continue to lag, with as many as 20\u0026ndash;30% of patients with ASUC requiring colectomy within 90 days of hospitalization.\u003csup\u003e10\u0026ndash;12\u003c/sup\u003e While colectomy is a life-saving procedure for patients with ASUC and long term outcomes can be positive, many patients experience operative complications as well as changes in QoL, work-productivity, mood, body image, fertility, sexual function, and bowel symptoms.\u003csup\u003e13\u003c/sup\u003e This reality is challenging for patients with UC who find themselves navigating ASUC and highlights the need to understand patient experiences and perspectives on ASUC including expectations for the hospitalization, preparedness for new treatment and/or surgery, and factors influencing their decision making regarding medication, surgery, and clinical trial participation.\u003csup\u003e14\u003c/sup\u003e\u003c/p\u003e \u003cp\u003eTo bridge this gap, we conducted qualitative semi-structured interviews with both individuals hospitalized for a severe flare of UC within the last 5 years as well as patients currently hospitalized with a severe flare of UC. Knowledge of patient experiences and perspectives is instrumental in developing patient-centered interventions that not only address poor clinical outcomes but also align with patients' values, preferences, and willingness engage in clinical research and trials.\u003c/p\u003e"},{"header":"Methods","content":"\u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003eStudy Design\u003c/h2\u003e \u003cp\u003eWe conducted a qualitative descriptive study that utilized a hybrid thematic analysis approach to understand perspectives and experiences of patients with UC navigating an ASUC flare. We conducted semi-structured interviews, allowing for a focused, yet flexible exploration of participants' experiences and perspective. A hybrid approach utilizes pre-determined codes or themes developed through clinical experience and existing literature (deductive approach), in combination with the generation of new codes and themes identified from the data obtained from the interview (inductive approach) as the starting point for thematic analysis.\u003csup\u003e15,16\u003c/sup\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eParticipants\u003c/h2\u003e \u003cp\u003eWe included adult patients (\u0026ge;\u0026thinsp;18 years of age) who were hospitalized for ASUC. Interviews were conducted both retrospectively among patients with a recent hospitalization for ASUC between January 2017 and March 2024, and prospectively among patients within 24 hours of hospitalization for ASUC from July 2023 to March 2024. Prospective interviews among patients with a current hospitalization were ASUC were included in order obtain real-time insight into patient treatment-related decision making prior to committing to medical therapy or surgery. We used purposive sampling to include ASUC patients who underwent colectomy to enrich the diversity of perspectives and experiences. The medical charts of eligible patients were then reviewed to confirm a diagnosis of ASUC (DR and JAB) and to extract demographic, disease characteristic, and colectomy status. Eligible patients were contacted by telephone (if previously hospitalized) or approached in-person (if currently hospitalized) inviting them to participate. Some participants had been hospitalized several times during their life and comments and experiences shared by the participants were included from all of their hospitalizations.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eData Collection\u003c/h2\u003e \u003cp\u003e Semi-structured interviews were conducted by DR and JAB and directed by an interview guide to facilitate discussion on key gaps in our understanding and approach to ASUC. The interview guide was developed based on available literature on ASUC and included open-ended questions and prompts designed to elicit detailed responses about a participants' experiences with hospitalization, perceptions of care, decision-making processes regarding treatment options, and perspectives on the impact of ASUC on their quality of life. See \u003cb\u003eSupplemental Table\u0026nbsp;1\u003c/b\u003e for domains identified and corresponding interview questions. Our interview questions were further refined through collaborative discussion and mock interviews with patient advocates with a recent hospitalization for ASUC. The interviews lasted forty-five minutes to one and a half hours. All interviews were audio-recorded and transcribed verbatim.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eAnalytical Approach\u003c/h2\u003e \u003cp\u003eInterviews were analyzed using a well-established hybrid inductive-deductive approach, which utilizes pre-determined codes or themes developed through clinical experience and existing literature (deductive approach), in combination with the generation of new codes and themes identified from the data obtained from the interview (inductive approach).\u003csup\u003e15,16\u003c/sup\u003e This hybrid thematic analysis approach was guided by a deductive coding framework (\u003cb\u003eSupplemental Table\u0026nbsp;1\u003c/b\u003e) derived from the study aims, while allowing for the inductive emergence of unanticipated themes. Coders were trained in qualitative analysis techniques to ensure reliability and validity in coding and the identification of themes. All interviews were coded by at least two investigators. The investigators extracted quotes and central ideas that were relevant to the codes that were developed. The codes and extracted quotes were reviewed and combined to generate preliminary themes. With input from all investigators, the themes were reviewed and refined carefully to make the themes unambiguous. Quotes representative of the final themes were then selected as representative and memorable. This process is not linear, and steps were revisited multiple times as necessary. This study was reviewed and approved by the institutional review board.\u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eParticipant Characteristics\u003c/h2\u003e \u003cp\u003eWe identified and interviewed 34 patients (44.2% of potential participants contacted) who had been hospitalized for ASUC at the University of Michigan. Among those who participated, 17 (50%) participants were currently hospitalized for ASUC. The mean age was 40.8 \u003cspan class=\"InlineEquation\"\u003e\u003cspan class=\"mathinline\"\u003e\\(\\:\\pm\\:\\)\u003c/span\u003e\u003c/span\u003e 13.0 years, 22 (65%) were male, 29 (85%) were White, and 32 (94%) were non-Hispanic. Participants had a mean UC duration of 11.0 \u003cspan class=\"InlineEquation\"\u003e\u003cspan class=\"mathinline\"\u003e\\(\\:\\pm\\:\\)\u003c/span\u003e\u003c/span\u003e 9.8 years, 27 (79%) had pancolitis, 21(62%) were considered steroid-refractory on admission and the majority had multiple advanced therapy exposures prior to admission with the most common being an anti-tumor necrosis factor. Ultimately, 6 (17.6%) participants underwent colectomy for their ASUC.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec10\" class=\"Section2\"\u003e \u003ch2\u003eThematic analysis\u003c/h2\u003e \u003cp\u003eHybrid thematic analysis uncovered five major themes. The themes were: 1) the pervasive impact of ulcerative colitis on quality of life and mental health, 2) challenges associated with navigating uncertainty in ASUC care, 3) prioritizing colon preservation, 4) bridging the divide between outpatient expectations and inpatient realities, and 5) balancing rapid symptom improvement with steroid safety.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eTheme 1: The Pervasive Impact of Ulcerative Colitis on Quality of Life and Mental Health\u003c/h2\u003e \u003cp\u003eWhen patients were engaged and encouraged to speak about the impact of their UC on their daily life, it was evident that UC- related symptoms had a profound and pervasive impact on quality of life and mental health, often resulting in alteration of daily routines and development of multiple coping strategies. For example, many patients reported a constant awareness of nearby bathrooms and modification of their activities focused on restroom accessibility. Many patients reported missing significant life events due to their UC such as family holidays and career opportunities. These were recounted with a sense of loss and regret. For example, one participant shared: \u0026ldquo;I missed Christmas due to a severe flare\u0026rdquo; while another said \u0026ldquo;I lost my job due to UC. I was hospitalized 38 times in one year. It [UC] took years away from my life\u0026rdquo;. Patients emphasized physical debilitation, including weight loss and fecal incontinence. This was illustrated by a participant to stated \u0026ldquo;Aside from having cancer or something that is terminal, I couldn\u0026rsquo;t think of a worse disease. You miss out on a lot of things [due to UC].\u0026rdquo;\u003c/p\u003e \u003cp\u003eSome patients described symptoms consistent with medical post-traumatic stress disorder such as negative changes in thoughts and mood associated with their prior experiences, intrusive memories, and coping behaviors to avoid reminders of their experience. Some of these coping strategies were maladaptive such as avoiding in-person medical care (especially in hospital) and delaying hospitalizations though recommended by their care team. For example, one participant told me that he \u0026ldquo;would rather do anything than come into the emergency room again\u0026rdquo; [specifically citing ineffective and experimental therapy even if it increased his risk of a bad outcome]. This avoidance led to maladaptive coping strategies, which included avoiding in-person medical care (especially when the care was to take place within a hospital) and delaying presenting to the hospital as long as possible, even when clearly necessary and recommended by their care team. One patient said, \u0026ldquo;no offense to you, but I hate doctors and I hate hospitals\u0026rdquo;. He stated, somewhat satirically, that the way he felt about going to the emergency room was encapsulated by the idiom if \u0026ldquo;I have to go back, you will never take me alive\u0026rdquo;. The mental health impact was further magnified by hospitalizations, which most patients identified as peak episodes of vulnerability. While patients were admitted, physical pain and psychological distress often culminated in a profound sense of abandonment, exacerbated by the perceived lack of emotional support from the medical system while they were admitted. One patient reminisced that while he was recently in the ED, he had intrusive \u0026ldquo;thoughts of being left there [in the ED] with no one to take care of me\u0026rdquo;. This patient also said during his most recent hospitalization, \u0026ldquo;my anxiety was through the roof\u0026hellip;For the first time I needed anxiety meds\u0026hellip;I am a lawyer, so stress management is the name of the game when it comes to my job\u0026rdquo;. Another patient said \u0026ldquo;I felt abandoned during my first hospitalization. My stomach was killing me to a point where I wanted to end my life.\u0026rdquo; Yet it is noteworthy that may patients identified familial support as a crucial lifeline during these difficult times. This was more pronounced for younger patients (\u0026lt;\u0026thinsp;40 years of age) compared to those (\u0026gt;\u0026thinsp;40) and those with shorter duration of disease. It was also noted that patients with more robust familial/social support in the hospital experienced less distress while being hospitalized.\u003c/p\u003e \u003cp\u003e \u003cem\u003eTheme 2: The Challenges Associated with Navigating Uncertainty in ASUC Care- The Critical Role of Communication and Anticipatory Guidance during Hospitalization\u003c/em\u003e \u003c/p\u003e \u003cp\u003eThe dynamic and constantly evolving nature of ASUC management add layers of complexity to these already challenging encounters. Given the rapid deterioration that can occur with ASUC, treatment must be initiated immediately. This urgency contrasts starkly with the more measured approach in outpatient management, where there is greater opportunity for discussion, insurance navigation, and prolonged informed patient-centered decision-making. In addition, treatment approach and medication may be escalated, augmented, or altered from one day to another based on poorly defined and often subjective measures of response to first-line and second-line therapies.\u003c/p\u003e \u003cp\u003ePatients described wide variability in prior hospital experiences. According to participants, their experience was influenced by the quality of communication and anticipatory guidance provided by their care team. For example, some participants reported satisfaction with their experience when they were admitted to academic medical centers staffed by UC specialists with high levels of experience. This was attributed to the multidisciplinary approach, which fostered a more comprehensive understanding of one\u0026rsquo;s condition and anticipated hospitalization trajectory. For example, one participant shared: \u0026ldquo;My hospitalization at the University was better. They checked in on me, answered all my questions, and were more supportive psychologically\u0026hellip;I felt like things were getting swept under the rug at the other hospital.\u0026rdquo; On the other hand, participants described feeling frustration when their situation failed to improve, or their condition worsened necessitating a change in the treatment plan which often included surgery. For example, one participant said, \u0026ldquo;during my first hospitalization I felt like I didn\u0026rsquo;t know what was going on and I was left in the dark\u0026rdquo;. This was particularly challenging when gastrointestinal specialists act as consultants rather than primary treatment team necessitating multiples lines of complicated coordination and communication between services to navigate the nuances of ASUC care.\u003c/p\u003e \u003cp\u003eOverall, participants placed a high value on understanding the day-to-day management decisions as well what markers would indicate a response to therapy and what rescue treatments could be considered in the event of an insufficient response. For example, one patient stated that \u0026ldquo;some people are better communicators than others. I liked when people talked about the greater picture rather than just the next 24 hours, like this is the plan for the day, see you tomorrow\u0026rdquo;. Patients also emphasized the value of autonomy in decision making and felt more equipped to make informed decisions when more effective communication was delivered. The desire for proactive, transparent discussions about potential outcomes, including the possibility of colectomy, was a recurring theme. Patients expressed a need for time to mentally prepare for such outcomes, which speaks to the necessity of early and direct anticipatory guidance. Hospitalizations for a ASUC were clearly identified as a critical juncture in a patient\u0026rsquo;s treatment journey, marked by heightened vulnerability and an urgent need for clarity and direction. However, providing detailed guidance is inherently difficult given the unpredictability of an ASUC clinical course and the need for rapid decision-making. Such foresight from medical teams can help patients grapple with the gravity of their situation, enabling heightened control in an otherwise tumultuous situation. Although participants conveyed their reliance on experts to guide their treatment plan, they felt \u0026ldquo;listened to\u0026rdquo; and \u0026ldquo;in control\u0026rdquo; when a more \u0026ldquo;open conversation\u0026rdquo; outlining one\u0026rsquo;s potential treatment path took place at the onset of one\u0026rsquo;s hospitalization. Patients felt more at ease when they were at an academic medical center with \u0026ldquo;UC specialists\u0026rdquo; and when their outpatient physician was engaged and involved in their inpatient care.\u003c/p\u003e \u003cp\u003e \u003cem\u003eTheme 3: Prioritizing Colon Preservation \u0026mdash; Patients are reluctant to accept colectomy and are willing to accept significantly greater safety concerns related to medication to avoid colectomy even if the potential chances of success are exceedingly low.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eWithin the multifaceted approach to managing ASUC, colectomy is often perceived by patients as a definitive last resort, signifying treatment failure and \u0026ldquo;giving up\u0026rdquo;. The discussions of colectomy often elicited fear and a profound emotional response with one participant recalling telling the surgeon \u0026ldquo;To leave the room unless colectomy was their only option\u0026rdquo; and other participants stating, \u0026ldquo;I would rather die [than undergo colectomy]\u0026rdquo; or that \u0026ldquo;I would not want to go on if I had to have a colectomy.\u0026rdquo; According to the participants, their intense aversion stemmed from their perceptions of post-colectomy body image, the impact on intimate relationships, limitations on activities of enjoyment, and the daunting nature of surgery itself and post-surgical recovery.\u003c/p\u003e \u003cp\u003eOur interviews revealed a spectrum of awareness about colectomy among patients. While some participants were uninformed about the multistage process and believed an ostomy would be permanent, others, despite being informed, remained firmly opposed to the idea comparing having a J-pouch to a \u0026ldquo;permanent UC flare\u0026rdquo; because of the frequent bowel movements that follows this procedure. The sentiment did not significantly shift even with the understanding that a staged surgical approach could potentially lead to an ileostomy takedown and the restoration of a more natural bowel function that is present with the construction of a J-pouch.\u003c/p\u003e \u003cp\u003eParticipants' decision-making regarding initiation of new medications and their risk tolerance for side effects and potential complications when starting a new medication were explored with intriguing findings. Participants placed high value on efficacy and rapidity of onset, as the majority expressed an overwhelming desire for treatment that resulted in swift and effective relief, allowing a return to normalcy in life. Despite experiencing severe side effects in some cases, participants exhibited a remarkably high tolerance for medication risk, accepting the potential for serious infections and malignancies as lesser evils compared to the daily struggles with UC or perceived repercussions of a colectomy. One participant shared \u0026ldquo;theoretical risks aren\u0026rsquo;t that significant compared to the hellish reality\u0026rdquo; while another participant said \u0026ldquo;I would consider joining a study. No one wants to be the Guinea pig, but [I] would probably be [willing to be] in trials.\u0026rdquo;\u003c/p\u003e \u003cp\u003eWhen faced with the option for medical therapy, even with a high likelihood of failure, participants expressed an unwavering desire to proceed. The rationale was that an attempted and failed medical management made the transition to accepting colectomy somewhat easier, as if they had exhausted all other avenues. This tolerance extended to the consideration of less-established clinical trials, higher-than-approved medication dosages, and combining or stacking multiple immunosuppressant therapies if it offered even a sliver of hope to avoid surgery (e.g. \u0026ldquo;I would try anything to keep my colon- eastern medicine, sticking medication up my butt- you name it.\u0026rdquo;) Generally, patients with a short duration of disease or patients who experienced an extended remission prior to hospitalization were more opposed to surgery, whereas patients with long-standing disease, frequent hospitalization, prolonged outpatient corticosteroid use, and multiple medication failures were more willing to accept the need for surgery regardless of their current symptom burden.\u003c/p\u003e \u003cp\u003eOur interviews also shed light on the post-colectomy reflections of participants. Some who required colectomy, reported a retrospective appreciation for the procedure, acknowledging that their pre-surgery judgments were clouded by fear and uncertainty. With hindsight, they shared sentiments of gratitude, recognizing their colectomy as a pivotal point leading to a better quality of life than what they experienced while on medications. For example, one participant showed \u0026ldquo;If I had to do it all over again at 24 [age at which he was diagnosed with UC], I would have said give me the colectomy then. I have a better quality of life now than I ever did on the medications\u0026rdquo;. However, most participants felt unprepared for their post-operative course and underestimated the frequency and impact of common post-operative challenges (such as post-operative pain, nausea, ileus, etc.) despite reportedly having several in-depth conversations with their surgeons prior to the procedure. In addition, patients described being unprepared for the everyday challenges of living with an ostomy such as finding \u0026ldquo;appropriate clothing\u0026rdquo; and adaptations for certain activities such as exercising and playing sports. Despite the difficulties, participants consistently expressed that undergoing colectomy allowed them to return to activities that they could not perform prior to colectomy, such as opening their own business or returning to work/school.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eTheme 4: Bridging the Divide Between Outpatient Expectations and Inpatient Realities\u003c/h2\u003e \u003cp\u003eAccording to participants, a notable discord exists between outpatient management expectations and urgency of inpatient treatment for ASUC flares in the continuum of UC care. Participants described entering the hospital with the belief that outpatient therapeutic strategies would seamlessly transition to the inpatient context and that all the available medications could be applied to their inpatient management. This misalignment was further compounded by the immediate need for efficacious and rapid-acting interventions that the inpatient setting demands, a stark contrast to the deliberate, long-term management strategies typical of outpatient care.\u003c/p\u003e \u003cp\u003eWhile there is an array of FDA approved medications for UC, most participants were surprised that only a select few were available inpatient. The expectation for intravenous corticosteroids to be augmented by novel therapies reflects a hope for symptom normalization that may not align with inpatient therapeutic limitations. Participants shared their frustration with the lack of available inpatient therapeutics, especially when novel efficacious therapies (such as tofacitinib or upadacitinib) may exist but not be available at many hospitals due to inpatient formulary restrictions and costs. This was illustrated by a participant who stated, \u0026ldquo;When I got admitted last time, they put me on IV steroids and after two days the guy was talking about removing my colon. To me, there has to be a dozen treatments before we get here [needing a colectomy]. Let\u0026rsquo;s go through those dozen options and be patient before we talk about a permanent surgery. We are going to cross every bridge before we get there.\u0026rdquo;\u003c/p\u003e \u003cp\u003eMoreover, the perception of colectomy \u0026mdash; not as a legitimate treatment modality but as a marker of therapeutic failure \u0026mdash; exacerbated participant anxiety and frustration during their hospital admissions. This discrepancy appeared to be further exacerbated when patients had not previously engaged in any discussions about the role of colectomy in UC management and differences in the approach to care in the hospital setting. In high-acuity inpatient situations, the urgency of therapeutic decisions, necessitated by the risk of complications such as toxic megacolon and perforation, is often not fully appreciated by patients. These sudden discussions about colectomy, often caught patients off-guard, leaving patients feeling overwhelmed and unprepared to make important treatment decisions. One participant stated \u0026ldquo;My outpatient gastroenterologists tiptoed around the subject of colectomy and was much more focused on different drug options\u0026rdquo; while another participant stated \u0026ldquo;The first conversation [about colectomy] was in the hospital, and it didn\u0026rsquo;t go well. I understood that a certain amount of patients would require a colectomy, but I didn\u0026rsquo;t think that it really applied to me.\u0026rdquo;\u003c/p\u003e \u003cp\u003eClinician-patient relationship, cultivated in the outpatient setting, clearly played an important role in the transition to inpatient care. For many, the inclusion of a familiar and trusted outpatient gastroenterologists in hospital-based treatment discussions served as a grounding and informative source of comfort to help better understand the rationale behind acute management decisions. This generally resulted in patients being more receptive to the proposed treatment. On the other hand, many patients expressed frustration with their outpatient provider \u0026ndash;blaming them for their hospitalization based on poor management decisions, poor communication, and selection of ineffective medications. While some patients expressed skepticism for medical treatments offered, most patients trusted the information they received from their inpatient treatment team, especially when they observed good communication between the various team members.\u003c/p\u003e \u003cp\u003e \u003cem\u003eTheme 5: Balancing rapid symptom improvement against steroid safety concerns.\u003c/em\u003e \u003c/p\u003e \u003cp\u003eWhen discussing thoughts about corticosteroids, there was a clear dichotomy within the UC patient community. This was aptly described by one patient as a \u0026ldquo;love-hate\u0026rdquo; relationship. The rapid and effective control of inflammation and associated symptoms are often offset by the consequences of chronic use, including, but not limited to, osteoporosis, hyperglycemia, psychiatric effects, and increased susceptibility to infections. Such side effects have been appropriately described by some participants as a \u0026ldquo;necessary evil\u0026rdquo;, where the benefits of immediate relief are weighed against the risk of long-term harm.\u003c/p\u003e \u003cp\u003ePatients appropriately recognized the acute and long-term negative effects associated with corticosteroid therapy, stating they would not take them \u0026ldquo;unless absolutely necessary\u0026rdquo;, describing steroids as \u0026ldquo;the worst medications you got\u0026rdquo;. In addition, many patients recognized that steroids only provide a short-term \u0026ldquo;Band-Aid\u0026rdquo; solution for UC, due to lack of data supporting the use of corticosteroids as a long-term maintenance strategy. One patient characterized the short-term benefit as follows: \u0026ldquo;once you taper down, it flared back up, and you end up in the hospital and you got to start all over again\u0026rdquo;. Patients generally recognized the role corticosteroids play in controlling acute flares of disease with some patients more willing to take corticosteroids as they represent a \u0026ldquo;known\u0026rdquo;, \u0026ldquo;proven\u0026rdquo;, and readily accessible entity compared to the often \u0026ldquo;scary\u0026rdquo; infusion-based biologics or \u0026ldquo;new\u0026rdquo; and \u0026ldquo;unknown\u0026rdquo; small molecules. This preference for corticosteroids was most prevalent among patients with a new diagnosis of UC, and among patients who have been able to successful manage their disease with mesalamine, intermittent and occasional corticosteroids, or did not require any therapy. However, most patients expressed enthusiasm for alternative therapies that could offer the rapid efficacy of corticosteroids without their extensive side effect profile. To patients, this represents a significant unmet need in the ASUC treatment algorithm, and patients were generally excited to participate in clinical research for agents that could replace corticosteroids in our current treatment pathways.\u003c/p\u003e \u003cp\u003eNevertheless, when patients were faced with a high likelihood of needing a colectomy to control symptoms and prevent complications, they expressed a preference for the most aggressive approach possible which often included the simultaneous administration of corticosteroids and advanced therapeutics. This approach reflects the imperative to maximize therapeutic efficacy while attempting to mitigate the risk of complications inherent to UC progression. Patients appeared to be most confident using corticosteroids in the hospital, despite their stated strong desire to avoid them in theory, appreciating the fact that corticosteroids have more efficacy data and represent a proven treatment compared to all other newer advanced therapies.\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis qualitative study captured meaningful insight into patient perceptions and experiences navigating an ASUC flare, identifying multiple areas for actionable interventions to improve care (\u003cstrong\u003eTable 2\u003c/strong\u003e). Five key themes were identified, each with significant implications for developing more patient-centered clinical management approaches for this challenging condition.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFirst, the pervasive impact of UC on patients\u0026apos; quality of life and mental health is clear.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThis thematic exploration underscores the necessity implementing \u0026ldquo;whole-person care\u0026rdquo; that addresses both the physical symptoms as well as the psychosocial manifestations of UC in pre-hospital, hospital, and post-hospital setting. While multiple quality improvement initiatives have been developed to improved deficiencies in quality of care of hospitalized IBD patients, these mostly focus on medical management and less on QoL and mental health. Previously, we conducted a small survey study of patients hospitalized with IBD and found that inpatient screening and management for anxiety and depression among inpatients with IBD was suboptimal.\u003csup\u003e17\u003c/sup\u003e Anxiety receives considerably less attention during hospital care, in part due to limited psychiatric resources, stigmatization of mental health issues, and the prioritization of \u0026ldquo;medical\u0026rdquo; problems over psychosocial needs.\u003csup\u003e18\u0026ndash;20\u003c/sup\u003e Hospitalizations can be highly stressful experiences for patients and are potential sources of medical trauma. A larger survey study of 639 IBD patients with at least one hospitalization for IBD found that 25% of patients with IBD report moderate to severe symptoms of post-traumatic stress directly related to their disease experiences (IBD-PTS).\u003csup\u003e21,22\u003c/sup\u003e This study identified negative hospitalization experiences and frequent and uncontrolled anxiety during hospitalizations as risk factors for IBD-PTS. \u003csup\u003e18\u003c/sup\u003e On the other hand, good communication by the medical team was protective against IBD-PTS.\u003csup\u003e18\u003c/sup\u003e Numerous studies have demonstrated that depression and anxiety affect disease activity, disease relapse, and healthcare utilization, underscoring the importance of addressing this as part of their hospitalization.\u003csup\u003e23\u003c/sup\u003e It is especially important that mental health concerns are addressed in hospitalized patient who undergo colectomy due to\u0026nbsp;frequent complications and prolonged length of stays, both of which has been identified as risk factors for anxiety, depression, and IBD-PST.\u003csup\u003e18,24\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eSecond, effective communication and anticipatory guidance during hospitalization are crucial to help patients navigate the uncertainty that accompanies a severe flare. Overall, our study underscores the imperative of robust communication as a cornerstone of patient-centered care, particularly in the acute setting where decisions are critical, and the stakes are invariably high. Numerous studies have demonstrated the importance of effective communication in healthcare, which not only improves patient satisfaction but also improves patient health outcomes through informed decision making.\u003csup\u003e25,26\u003c/sup\u003e Effective communication from physicians and nurses that incorporate patient preference and allow patients to feel included, listed to, and respected may reduce the risk for anxiety, depression, and IBD-PTS.\u003csup\u003e18\u003c/sup\u003e To compound the issue, studies have shown large discrepancies between physicians and their patients in regards to the perceived quality of communication, patient knowledge about their medical situation, and the quality of care a patient receives in the hospital.\u003csup\u003e27,28\u003c/sup\u003e\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThird, the pronounced aversion to colectomy among patients means patients were generally willing to accept considerable risk related to therapeutic medical trials before considering surgical options. Bewtra, \u003cem\u003eet al.,\u003c/em\u003e (2014), using a discrete-choice experiment methodology, demonstrated that UC patients were willing to accept considerable risk ( \u0026gt; 5% 10-year risk of mortality from lymphoma or infection) from medical therapy in order to avoid an ostomy.\u003csup\u003e29\u003c/sup\u003e However, while the initial resistance to colectomy is strong, \u0026nbsp;perspectives can shift towards increased acceptance of surgery. \u0026nbsp;In stark contrast to participants who had not undergone a colectomy, those who had a colectomy retrospectively viewed colectomy positively. These insights suggest that while the initial resistance to colectomy is strong, with proper guidance, support, and nuanced understanding of benefits of colectomy for a patient with ASUC, perspectives can shift. \u0026nbsp;This is consistent with a study by Brown et al. (2015), who found that 84% of patients who underwent colectomy for UC reported improved QoL compared to their status before surgery.\u003csup\u003e18\u003c/sup\u003e This major discrepancy stems from pre-surgery judgments being clouded by fear and uncertainty, which emphasizes the importance of proper guidance, support, and patient-centered inclusive communication as identified in a prior theme.\u003csup\u003e30\u003c/sup\u003e\u0026nbsp; Generally, while surgeons engage in in-depth discussions about indications for surgery, therapeutic options, as well as risk-benefit tradeoffs, they were generally poor at assessing a patient\u0026rsquo;s \u0026nbsp;understanding of the situation or picking up on subtle emotional and psychosocial clues.\u003csup\u003e31\u003c/sup\u003e The discrepancies in colectomy perceptions, represents a significant unmet need\u0026shy;\u0026ndash; that needs to be better addressed by a patient\u0026rsquo;s care team.\u003c/p\u003e\n\u003cp\u003eFourth, the disparity between outpatient expectations and the reality of inpatient treatment underscores the importance of aligning patient understanding with the urgency and limited options for inpatient care. From our interviews, educational strategies in the outpatient setting are not sufficiently addressing the potential challenges inherent to the inpatient management of ASUC. This clear divide between patient knowledge and expectations are likely contributing to the anxiety, depression, and trauma ASUC patients experience while inpatient, leaving patients consistently feeling overwhelmed and unprepared to make important treatment decisions specifically around colectomy. Since 20-30% of\u0026nbsp;UC\u0026nbsp;patients will find themselves admitted with a severe flare during their life-time, reassessment of our outpatient educational strategies is needed. Strategies that ensure patients are thoroughly informed about the acuity and severity of ASUC, as well as the different trajectories their condition may take once hospitalization becomes necessary. This would align patient expectations with the full spectrum of UC management and prepare them for possible inpatient scenarios including the limitations of pharmacologic options and the potential for surgical intervention. Clear communication and anticipatory guidance, as emphasized in previous themes, remain crucial, especially in the transition from outpatient to inpatient care settings. The inclusion of familiar and trusting outpatient gastroenterologists in hospital-based treatment discussions could serve to bridge the outpatient-inpatient divide.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFinally, balancing the rapid symptomatic relief of corticosteroids against significant adverse events, remains a significant concern for both patients and providers. This simply highlights the need to find suitable alternatives to corticosteroids that are equality or more effective, rapid acting, but have a more favorable safety profile and can be used as maintenance therapy. Currently only a handful of effective pharmacotherapy options are available for use in the hospital, with even less available to patients with prior anti-TNF exposure. While corticosteroids and cyclosporine are effective for induction, both are ineffective for maintenance therapy and are associated with significant adverse events.\u003csup\u003e3\u003c/sup\u003e Novel, targeted small molecules, such as tofacitinib or upadacitinib, are well suited to replace corticosteroids as first-line therapy.\u003csup\u003e32\u0026ndash;35\u003c/sup\u003e Singh, \u003cem\u003eet al.,\u003c/em\u003e conducted a randomized control trial comparing eight weeks of tofacitinib to prednisolone and found no difference in efficacy or safety.\u003csup\u003e36\u003c/sup\u003e Other studies have explored restricting corticosteroids to the hospital setting and rapidly discontinuing these once rescue therapy has been initiated.\u003csup\u003e37\u003c/sup\u003e This strategy aligns with the opinions of the patients in our study, who explicitly expressed a strong desire to avoid corticosteroids unless absolutely necessary. As outlined in prior themes, patients are willing to engage in experimental treatment strategies if there is a potential for a lower risk colectomy. \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo mitigate the challenges inherent in the management of ASUC and enhance patient experience, our analysis points toward the need to develop and deploy a multifaceted intervention that addresses both medical and psychosocial issues within and beyond the hospital setting.\u003csup\u003e38\u0026ndash;41\u003c/sup\u003e \u003cstrong\u003eTable 2\u0026nbsp;\u003c/strong\u003eoutlines some areas for improvement as well as some proposed actional interventions based on the findings our study. These interventions would complement the medical management and serve to optimize care and outcomes for patients with ASUC. Creating patient-centered materials such as detailed pamphlets, diagrams, and illustrations can simplify the complexity of ASUC care.\u003csup\u003e42,43\u003c/sup\u003e These resources would not only delineate the stepwise approach to management but also clearly define what constitutes a therapeutic response versus failure. For instance, visual aids could illustrate the timeline of expected outcomes following initiation of first-line therapy, the decision points for considering rescue treatments, and the potential pathways leading to surgery. Furthermore, standardized communication protocols could be established to guide healthcare providers in offering more concrete anticipatory guidance. This would include setting realistic timeframes for each phase of treatment and recovery, thereby managing expectations and reducing the anxiety associated with the uncertainty of ASUC progression. In addition, incorporating input from a patients outpatient gastroenterologist and connecting hospitalized patients with support from peers who have experiential knowledge of the specific situation, could be a potential means of improving patient knowledge and eliminating uncertainty.\u003csup\u003e44,45\u003c/sup\u003e These interventions should aim to provide patients with a clearer understanding of their disease process and foster a collaborative environment where decision-making is shared. By doing so, patients can become active participants in their care, even in the fast-paced and often unpredictable context of ASUC management.\u003csup\u003e45,46\u003c/sup\u003e\u003c/p\u003e\n\u003cp\u003eThe strength of our study lies in the robust, patient-centered qualitative methodology, enabling a deep understanding of the UC patient journey through both deductive and inductive thematic analysis. Nevertheless, the limitations include the potential for selection bias and the single-center study design, which may not fully capture the diversity of experiences across different healthcare settings.\u003c/p\u003e\n\u003cp\u003eIn conclusion, this study highlights the nuanced experiences of UC patients and the complexities of managing ASUC flares. Our findings advocate for a patient-centered, transparent approach to care, emphasizing the need for effective communication, education, and reevaluation of clinical practices to align with patient values and expectations.\u0026nbsp;\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003eAcute Severe Ulcerative Colitis (ASUC); Quality of life (QoL); Ulcerative colitis (UC); international review board (IRB)\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003ePDRH received consulting fees from AbbVie, Amgen, Genentech, JBR Pharma and Lycera. All other authors report no disclosures.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthor Contributions:\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eStudy concept and design: JAB, DR, PDRH, SB\u003c/p\u003e\n\u003cp\u003eAcquisition: JAB, DR\u003c/p\u003e\n\u003cp\u003eAnalysis, or interpretation of data: JAB, DR, PK, CL, QS, MD\u003c/p\u003e\n\u003cp\u003eDrafting of the manuscript: JAB, DR\u003c/p\u003e\n\u003cp\u003eCritical revision of the manuscript: All authors\u003c/p\u003e\n\u003cp\u003eFinal approval: All authors\u003c/p\u003e\n"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eChang JT, Hays RD, Shekelle PG, et al. Patients\u0026rsquo; global ratings of their health care are not associated with the technical quality of their care. \u003cem\u003eAnn Intern Med\u003c/em\u003e. 2006;144(9):665-672. doi:10.7326/0003-4819-144-9-200605020-00010\u003c/li\u003e\n\u003cli\u003eBartlett EE, Grayson M, Barker R, Levine DM, Golden A, Libber S. 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Inflammatory Bowel Disease (IBD) Connect: A Novel Volunteer Program for Hospitalized Patients with IBD and Their Families. \u003cem\u003eInflamm Bowel Dis\u003c/em\u003e. 2016;22(11):2748-2753. doi:10.1097/MIB.0000000000000952\u003c/li\u003e\n\u003c/ol\u003e"},{"header":"Tables","content":"\u003cp\u003e\u003cstrong\u003eTable 1\u003c/strong\u003e\u003c/p\u003e\n\u003ctable border=\"0\" cellspacing=\"0\" cellpadding=\"0\" width=\"954\"\u003e\n \u003cthead\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"bottom\"\u003e\n \u003cp\u003e\u003cstrong\u003eOverall\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eN = 34\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrior Hospitalization\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eN = 17\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\"\u003e\n \u003cp\u003e\u003cstrong\u003eCurrent Hospitalization\u003c/strong\u003e\u003c/p\u003e\n \u003cp\u003eN = 17\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/thead\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eAge, years\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e40.8 (13.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e36.5 (11.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e45.0 (14.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eSex\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eMale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e22 (65%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e10 (59%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e12 (71%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eFemale\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e12 (35%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e7 (41%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e5 (29%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eRace\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eWhite\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e29 (85%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e15 (88%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e14 (82%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eBlack\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eOther\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e5 (15%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e2 (12%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e3 (18%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eEthnicity\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eNon-Hispanic\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e32 (94%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e16 (94%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e16 (94%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eHispanic\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e2 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eDuration IBD, years\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e11.0 (9.8)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e9.8 (8.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e12.2 (10.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eDistribution of Disease\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eProctitis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e2 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003eLeft-sided Colitis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e5 (15%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e4 (24%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003ePancolitis\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e27 (79%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e15 (88%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e12 (71%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eCorticosteroid Dependent\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e21 (62%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e8 (47%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e13 (76%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrior Advanced Therapy Use\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e29 (85%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e13 (76%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e16 (94%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber Prior Advanced Therapy Exposures\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e1 Advanced Therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e11 (32%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e4 (24%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e7 (41%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e2 Advanced Therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e9 (26%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e3 (18%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e6 (35%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e3 Advanced Therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e8 (24%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e5 (29%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e3 (18%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e4 Advanced Therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e5 Advanced Therapy\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e1 (2.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrior Infliximab Exposure\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e22 (65%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e10 (59%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e12 (71%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrior Adalimumab Exposure\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e12 (35%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e7 (41%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e5 (29%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrior Ustekinumab Exposure\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e4 (12%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e3 (18%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrior Vedolizumab Exposure\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e14 (41%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e7 (41%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e7 (41%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrior Tofacitinib Exposure\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e5 (15%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e4 (24%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003ePrior Upadacitinib Exposure\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e1 (2.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e0 (0%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eTruelove and Witt\u0026apos;s Criteria Met\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e26 (76%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e11 (65%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e15 (88%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eNumber of Bloody Bowel Movements\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e9.7 (5.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e9.0 (7.3)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e10.3 (4.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eLength of Stay, days\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e8.4 (9.2)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e10.9 (12.1)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e6.0 (3.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eColectomy Status\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e6 (18%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e5 (29%)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003e1 (5.9%)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"34.696016771488466%\" valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eTime From Discharge to Interview, years\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e0.8 (1.9)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"23.270440251572328%\" valign=\"top\"\u003e\n \u003cp\u003e2.3 (1.7)\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"18.763102725366878%\" valign=\"top\"\u003e\n \u003cp\u003eNA\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"100%\" colspan=\"4\" valign=\"top\"\u003e\n \u003cp\u003eContinuous variables are presented as mean (standard deviation). Categorical variables are presented as proportion (percentage)\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cbr\u003e\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTable 2:\u0026nbsp;\u003c/strong\u003eActionable interventions to improve acute severe ulcerative colitis (ASUC) care based on patient perceptions and experiences that were identified in our study\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\" width=\"666\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd width=\"36.93693693693694%\" valign=\"bottom\"\u003e\n \u003cp\u003e\u003cstrong\u003eIdentified Areas for Improvement\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"63.06306306306306%\" valign=\"bottom\"\u003e\n \u003cp\u003e\u003cstrong\u003eProposed Actionable Interventions\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"36.93693693693694%\"\u003e\n \u003cp\u003e\u003cstrong\u003eImpaired quality of life and mental health due to ulcerative colitis\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"63.06306306306306%\"\u003e\n \u003cp\u003eDevelop comprehensive inpatient support programs encompassing mental health and quality of life assessments.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"36.93693693693694%\"\u003e\n \u003cp\u003e\u003cstrong\u003eLack of communication and guidance on clinical course\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"63.06306306306306%\"\u003e\n \u003cp\u003eImplement standardized protocols for inpatient education and create pathways for continuous outpatient-inpatient dialogue. Develop detailed visual aids and pamphlets.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"36.93693693693694%\"\u003e\n \u003cp\u003e\u003cstrong\u003eMisaligned expectations for inpatient care\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"63.06306306306306%\"\u003e\n \u003cp\u003eEducate patients in the outpatient setting about the nature of inpatient care and potential for escalated treatment options including colectomy to avoid ASUC-related complications.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"36.93693693693694%\"\u003e\n \u003cp\u003e\u003cstrong\u003ePerception of colectomy\u0026nbsp;\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"63.06306306306306%\"\u003e\n \u003cp\u003eFacilitate honest, patient-centered discussions on risks and benefits of colectomy. Introduce decision aids for surgery, emphasizing the pros and cons, and provide preoperative counseling sessions. Discuss potential for colectomy as an outpatient and early in a patient\u0026rsquo;s inpatient treatment course. Implement peer support interventions by connecting hospitalized patients to other UC patients who have experiential knowledge and personal prior experience with an admission for ASUC.\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd width=\"36.93693693693694%\"\u003e\n \u003cp\u003e\u003cstrong\u003eNegative perceptions of steroids\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd width=\"63.06306306306306%\"\u003e\n \u003cp\u003ePromote the use of steroid-sparing strategies and educate patients. Support clinical trials that explore steroid-sparing or steroid-minimizing treatment strategies for ASUC\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u0026nbsp;ASUC: Acute severe ulcerative colitis; UC: ulcerative colitis;\u003c/p\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"digestive-diseases-and-sciences","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ddsj","sideBox":"Learn more about [Digestive Diseases and Sciences](http://link.springer.com/journal/10620)","snPcode":"10620","submissionUrl":"https://submission.nature.com/new-submission/10620/3","title":"Digestive Diseases and Sciences","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"acute severe ulcerative colitis, ulcerative colitis, inflammatory bowel disease, colectomy","lastPublishedDoi":"10.21203/rs.3.rs-4707080/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4707080/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eIntroduction:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAcute severe ulcerative colitis (ASUC) is a life-treating presentation of ulcerative colitis (UC) that requires prompt initiation of treatment to avoid complication. Unfortunately, outcomes for ASUC are suboptimal, with as many as 20-30% of patients requiring colectomy. This can be challenging for patients and highlights the need to understand patient experiences and perspectives navigating ASUC.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA qualitative descriptive study utilizing semi-structured interviews was conducted to understand perspectives and experiences of patients navigating ASUC. Adult patients hospitalized for ASUC between January 2017 and March 2024 were eligible. Interviews were conducted both retrospectively among patients with a recent hospitalization and prospectively among patients within 24 hours of hospitalization for ASUC. Interviews were analyzed using a well-established hybrid inductive-deductive approach.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThirty-four patients (44.2% response rate) hospitalized for ASUC were interviewed. Hybrid thematic analysis uncovered five major themes: 1) the pervasive impact of UC on QoL and mental health, 2) challenges associated with navigating uncertainty 3) prioritizing colon preservation, 4) bridging the divide between outpatient expectations and inpatient realities, and 5) balancing rapid symptom improvement with steroid safety. Our findings advocate for transparent approach to care, emphasizing the need for effective communication, education, and better alignment with patient values and expectations.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusions:\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFive key themes were identified, each with significant implications for developing a more patient-centered approach to ASUC care. These themes captured meaningful insight into patient perceptions and experiences, identifying multiple areas for actionable interventions to improve care.\u003c/p\u003e","manuscriptTitle":"Understanding the Perspectives and Experiences of Patients with Acute Severe Ulcerative Colitis in the Hospital: A Qualitative Analysis ","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-08-05 08:38:59","doi":"10.21203/rs.3.rs-4707080/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-08-23T07:52:04+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-08-22T13:14:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"191569428465129310845612630525052385611","date":"2024-08-12T12:27:39+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-07-17T01:33:49+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-07-15T16:09:10+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-07-11T12:55:13+00:00","index":"","fulltext":""},{"type":"submitted","content":"Digestive Diseases and Sciences","date":"2024-07-08T16:47:59+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"digestive-diseases-and-sciences","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"ddsj","sideBox":"Learn more about [Digestive Diseases and Sciences](http://link.springer.com/journal/10620)","snPcode":"10620","submissionUrl":"https://submission.nature.com/new-submission/10620/3","title":"Digestive Diseases and Sciences","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"66033932-505b-4106-b178-d38da0b32bc7","owner":[],"postedDate":"August 5th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2024-09-23T16:13:33+00:00","versionOfRecord":{"articleIdentity":"rs-4707080","link":"https://doi.org/10.1007/s10620-024-08633-0","journal":{"identity":"digestive-diseases-and-sciences","isVorOnly":false,"title":"Digestive Diseases and Sciences"},"publishedOn":"2024-09-18 15:57:03","publishedOnDateReadable":"September 18th, 2024"},"versionCreatedAt":"2024-08-05 08:38:59","video":"","vorDoi":"10.1007/s10620-024-08633-0","vorDoiUrl":"https://doi.org/10.1007/s10620-024-08633-0","workflowStages":[]},"version":"v1","identity":"rs-4707080","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4707080","identity":"rs-4707080","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}