Abstract
Acute severe ulcerative colitis (ASUC) comprises a severe manifestation of inflammatory bowel disease that requires close monitoring and aggressive treatment. This study aimed to evaluate the experience of patients admitted to a single tertiary service with ASUC, focusing on perception of the received therapy and preferences regarding location of care. Patients admitted with ASUC were invited to complete a short online survey. Data regarding disease characteristics, management, and outcomes were obtained through retrospective chart review. Of the 24 patients meeting Truelove and Witt's criteria for ASUC, 20 (74.07%, median age 34 [interquartile range 29–48] years, 13 [65%] female) responded. The majority of study participants reported receiving excellent overall inpatient care (15 out of 20, 75%), a strong agreement that they felt safe as an inpatient (17 out of 20, 85%) and felt their individual needs were met and questions were answered during hospitalization (15 out of 20, 75%). A preference toward inpatient management rather than an ambulatory setting was noted (14 out of 20, 70%). In conclusion, patients admitted with ASUC experienced a high degree of satisfaction with their care, with a preference toward inpatient care.
Keywords
Introduction
Ulcerative colitis (UC) is a chronic condition that forms 1 of the 2 major subtypes of inflammatory bowel disease (IBD). The relapsing-remitting nature of the disease often leads to significant adverse physical and psychological impacts for patients.1‐3 Approximately 20% of patients with UC require hospitalization within the first 5 years of diagnosis. 4 Acute severe UC (ASUC) represents a severe exacerbation of UC and maybe the index presentation of UC in approximately 19% of patients. 5 ASUC is defined by the Truelove and Witt's (TLW) criteria and requires inpatient management with high dose steroids, with medical or surgical rescue therapy in case of nonresponse, most commonly infliximab in the modern era. The condition poses significant morbidity and mortality, associated with colectomy (surgical resection of all or part of the large intestine) in up to 19%, 6 and potential mortality in up to 1%. 7
As a condition that requires intensive assessment and management, along with a threat of colectomy and potential ileostomy (a surgical procedure where the end of the small intestine is brought through an opening called a stoma into the abdominal wall), there is understandably, significant impact on psychological well-being of patients. However, there have not been any studies specifically focused on the experience of patients hospitalized with this condition. Emerging data regarding Janus kinase inhibitors such as tofacitinib and upadacitinib in the treatment of ASUC also poses questions regarding the option for patients to be treated with an oral agent as opposed to traditional intravenous therapy 8 and changing the paradigm of delivery of care to home-based care, reducing healthcare strains. Transitioning inpatient care to the outpatient setting safely is an established model of care, with strategies successfully implemented in areas such as acute pulmonary emboli with high patient acceptance. 9 This study aimed to characterize the patient experience during their inpatient admission for ASUC, focusing on their overall perception of the quality of their care and exploring their preferences regarding the route of therapies and treatment location.
Methods
Adult patients hospitalized due to ASUC at an IBD inpatient center between May 2022 and October 2023 were invited to participate. The study questionnaire was crafted through collaborative discussions among members of the IBD unit at our center and administered via an online RedCap survey. Survey questions comprised a 4-option question regarding the perception of overall hospital care, followed by 10 questions with 5-point Likert scale responses. These questions were designed to assess multiple domains, including education and rapport with clinicians, emotional support, comfort with medical therapy preference regarding route of administration, and preference regarding location of care. Details of the study questionnaire are outlined in Figure 1.
Study responses.
Information relating to patient demographics, disease characteristics, inpatient therapy, and treatment outcome were captured using the electronic medical record. Statistical analysis was performed using Prism 10 (GraphPad Software Inc., La Jolla, USA). Ethics approval was granted by our local Research Development and Governance Unit and all patients provided verbal consent for participation.
Results
Of the 24 patients with ASUC invited to participate, 20 responded. The demographic and disease characteristics of the participants are outlined in Table 1. The median age of patients was 34 (interquartile range [IQR] 29–48) years with a median total disease duration of 2.3 (IQR 1.6–6.5) years. Nearly half of the patients (9 out of 20, 45%) had a Mayo Endoscopic Subscore of 3, 7 out of 20 patients had prior or current biologic exposure and 7 out of 20 had prior or current immunomodulator exposure. Fourteen patients (70%) required rescue therapy in addition to intravenous hydrocortisone (13 intravenous infliximab, 1 upadacitinib). No patients required an inpatient colectomy. The median length of stay was 5 (range 3–7) days.
Participant Demographics and Disease Characteristics During Admission.
Abbreviations: 5ASA, 5-aminosalicylic acid; CI, confidence interval; CRP, C-reactive protein; Hb, hemoglobin; HR: heart rate; IQR: interquartile range; LOS, length of stay; TLW, Truelove and Witt's; UC: ulcerative colitis; 5SA: 5-aminosalicylate.
Study responses are outlined in Figure 1. Fifteen (75%) of patients felt they received excellent overall inpatient care and 17 (85%) strongly agreed that they felt safe when managed in the hospital. Thirteen (65%) and 15 (75%) of patients felt their views were listened to, and their individual needs were met, respectively. Most of the participants (14 out of 20, 70%) reported a good understanding of their disease and its management. Sixteen (80%) strongly agreed that their disease and management plans were well explained to them in the hospital.
A combined 80% of patients expressed reluctance for potential home-based care for ASUC. Similarly, only 30% responded in agreement that they would feel confident in the safety of their treatment and care if managed at home instead of the hospital. Twenty percent of patients agreed with a statement expressing a preference to have been managed at home during their admission, and 70% of patients expressed a preference for continuing to be treated in the hospital in the future. Eight participants (40%) expressed concerns with respect to the safety of treatment at home. The intravenous route was preferred over oral tablets for ASUC management by 11 (55%) of participants, while 6 (30%) felt neutral toward either route.
Discussion
ASUC represents a severe exacerbation of UC requiring intensive assessment and treatment, with the potential for a significant impact on patients’ emotional and physical well-being. This study demonstrated that most patients admitted with ASUC preferred care and felt safe in the inpatient setting, felt more comfortable receiving intravenous medication, and felt concerned about any potential home-based care for their condition.
Clearly, most patients preferred hospital-based care with intravenous medication administration to care at home. Furthermore, most patients felt their individual needs and questions were met in the hospital, all reporting having a good understanding of their disease. Given that most of these patients had experienced severe disease exacerbation, it is understandable that patients were concerned about the potential loss of intensive monitoring and treatment in case of home-based management. Most (55%) of the participants preferred intravenous rather than oral medical therapy. This may in part be due to perceptions of rapid symptom relief with intravenous medical therapy, with the speed of onset of symptom relief a priority among most patients with IBD in an earlier study. 10 Hence, any developing strategies for the management of patients with ASUC would need to consider measures to reassure patients regarding safety, speed of onset of action, and close monitoring of disease activity.
Reassuringly, all patients felt that their needs and questions were answered in the hospital and that their disease and management plans were well-explained. This may have translated into the perception of a good understanding of their disease and management. Previous studies in the ambulatory setting have also reported high patient satisfaction, with women and those with longer duration of disease reporting lower perceived quality of care. 11 No such trend was noted in the current study of patients hospitalized with ASUC. High patient satisfaction with care may lead to better engagement in self-care, enhance communication with healthcare providers, and improve adherence to treatment, 12 which ultimately can reduce economic burden. The care of patients admitted with ASUC is likely to follow a similar principle.
Further research is required to definitively establish whether additional factors modulate this choice of intravenous or oral administration, and indeed the preference of hospital over home-based administration. It remains to be determined whether these concerns may be ameliorated by the utilization of an oral agent with comparable efficacy to an intravenous therapy agent, or frequent and reliable follow-up outpatient service with daily reviews such that any failure to respond to therapy is identified.
Limitations
Due to the nature of the retrospective study design, our results are subject to a degree of recall bias, particularly for patients who were admitted at the start of the study's inclusion period. Furthermore, as a single-center study, the patient experience may not be generalizable to a broader international setting. Finally, it is acknowledged that this was a small sample size, and these results require validation in larger studies.
Conclusions
In conclusion, this experience survey of patients hospitalized with ASUC showed general satisfaction with the quality of care and a perception of a high degree of understanding of the condition and its management. Most patients preferred inpatient intravenous therapy-based management. Future studies will be required to elucidate the additional factors that drive this preference and to facilitate an outpatient model that delivers an equivalent patient experience to that of inpatient care.
Footnotes
Author contributions
MM participated in the research design, performance of the research, data analysis, and writing of the paper. SY participated in the research design, performance of the research, data analysis, and writing of the paper. AC participated in the research design and performance of the research. SL participated in the research design and performance of the research. MG participated in the research design, data analysis, and writing of the paper. All authors reviewed and approved the final version of the manuscript for submission.
Declaration of Conflicting Interests
The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: MG has served on the advisory board of Abbvie and Pfizer, and has received speaker fees, research, or travel grants from Abbvie, Celltrion, Dr Falk, Fresenius Kabi, Janssen, Pfizer, Pharmacosmos, and Takeda.
Ethical Approval
This study was approved by the Northern Health Research Development and Governance Unit (Reference 2023_non-HREC_32).
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Human and Animal Rights
All procedures in this study were conducted in accordance with the Northern Health Research Development and Governance Unit (Reference 2023_non-HREC_32).
Informed Consent
Verbal informed consent was obtained from the patients for their anonymized information to be published in this article.
