1. Introduction
Inflammatory bowel disease (IBD) is a chronic, relapsing inflammatory condition of the gastrointestinal tract, encompassing Crohn’s disease (CD), ulcerative colitis (UC), and indeterminate (unclassified) colitis. Although its exact aetiology remains unclear, IBD is believed to result from a dysregulated immune response in genetically predisposed individuals, triggered by environmental and microbial factors [
1,
2]. The disease course is often unpredictable, with relapsing gastrointestinal inflammation episodes that sometimes cause dramatic symptoms. The most common among these are diarrhoea, bloody stools, and bowel urgency in UC, and abdominal pain and diarrhoea in CD. Disease relapses can occasionally present with fever, fatigue, weight loss, and the loss of appetite [
1]. While primarily impacting the gastrointestinal (GI) tract, IBDs may also manifest in other organ systems in approximately one-third of patients. Extraintestinal manifestations (EIMs) may present during the active or quiescent phases of IBD. They may occur before, at the same time, or after a diagnosis of inflammatory bowel disease has been made. Their response to treatment varies—some resolve with the control of intestinal inflammation, while others demand additional, organ-specific interventions. EIMs most frequently affect the musculoskeletal system (peripheral or axial arthritis and enthesitis), as well as the skin (pyoderma gangrenosum, erythema nodosum, and aphthous ulcers), the hepatobiliary system (notably primary sclerosing cholangitis), and the eyes (such as episcleritis, anterior uveitis, and iritis) [
3,
4]. A recent systematic review of the literature concluded that the prevalence of IBD in Europe is close to 0.3%, equivalent to around 2.25 million people [
5,
6].
The standard therapeutic approach to IBD involves using pharmacotherapy to control symptoms, mainly by modulating the immune response. These include aminosalicylates, corticosteroids, immunomodulators, and, more recently, biologics (anti-TNFs, ustekinumab, vedolizumab, mirikizumab, risankizumab, guselkumab) and small molecules (tofacitinib, upadacitinib, filgotinib, ozanimod, etrasimod). Despite the recent progress in conservative treatment in IBD, surgery continues to play a significant role in the overall therapeutic approach. Recent studies have shown that the surgical rate for Crohn’s disease declined from 10% to 8.8% (
p < 0.001), while for ulcerative colitis, it decreased from 7.7% to 7.5% [
1,
7]. Croatia is currently among the countries providing its patients with the advanced, modern therapeutic options outlined above. The Sestre Milosrdnice University Hospital Centre has its own team of IBD specialists, tasked with personalising therapeutic interventions to the individual needs of each patient.
IBD is characterised by periods of relapse and remission, with symptoms such as diarrhoea, rectal bleeding, urgency, faecal incontinence, and abdominal pain significantly impacting the patients’ quality of life, which, compared to healthy individuals, is reduced in these patients [
8,
9,
10,
11,
12]. The World Health Organisation defines quality of life as an individual’s perception of their position in life in the context of the culture and value systems in which they live, and about their goals, expectations, standards, and concerns [
13]. The quality of life of the patients with IBD is often assessed using questionnaires, such as the generic EUROHISQoL [
14] and the IBD-specific IBDQ [
15]. Earlier research and guidelines have not strongly emphasised improved quality of life as a therapeutic goal, but this perspective has changed significantly in the last decade. Since 2013, a growing number of unique publications have been released each year, focusing on quality of life in patients with IBD. In the recent period, patient-reported outcomes and quality of life have grown in importance, both in research and in clinical trials [
10,
11,
16]. The recent CONFIDE study [
8] aimed to define the difference in perspectives between patients and healthcare providers regarding symptom severity and impact. Among other shortcomings in communication, they found a key discrepancy in the importance given to bowel urgency and the fears associated with this symptom.
The following question arises: which disease phenotype has a greater impact on the quality of life in patients with IBD? It was previously believed that Crohn’s disease (CD) had a greater impact on quality of life than ulcerative colitis (UC), which is reflected in the literature by a significantly higher volume of research focused on CD. However, when you look at the results of this study, you can see that the impact of CD and UC on quality of life is similar [
17].
Considering the newfound importance of quality of life (QoL) and its novelty, this cross-sectional study was conducted to assess the following: (1) the impact IBD and specific therapy (conventional vs. advanced options) have on various aspects of patients’ QoL; (2) the patients’ perception of IBD medications and possible surgical interventions; and (3) the perception of QoL as a therapeutic goal.
4. Discussion
For decades, the conventional approach to medicine has given precedence to addressing the physical aspects of illness, with achieving clinical, biochemical, and endoscopic response and remission as the primary therapeutic objectives in IBD. In recent times, with the advancements in treatment options, an increased emphasis has been placed on treatment targets from the patient’s perspective and quality of life for patients with IBD.
Consistent with previous studies [
10,
11,
12], our results showed that patients with IBD have a significantly reduced quality of life. A significant proportion of patients did not perceive themselves as being as healthy as others (21.8%) and disagreed with the statement that their overall health was excellent (28.2%). It is important to highlight that the decline in the quality of life of our patients occurred not only during active disease periods but also persisted during the periods of remission, as in previous research [
11,
21]. This data alone emphasised the importance of disease clearance, restoring quality of life as one of the main goals in treating IBD. Still, the single most important predictor of poor quality of life was disease activity [
11,
12,
22,
23,
24,
25]. In line with earlier research, our results showed that most variables affecting our patients’ quality of life were directly related to faecal urgency or faecal incontinence as the consequence of disease activity. For example, a significant portion of our patients stated that while planning any outing, they needed to consider the location and availability of toilets. They also preferred travel options with toilets, and while in public places, they often chose seats near toilets. Faecal urgency and faecal incontinence are distressing symptoms of IBD that lead many patients to avoid work, social, and physical activities. Even more concerning, earlier research showed that healthcare providers often severely underestimate these symptoms [
8]. Defining therapeutic goals together is key in enhancing the overall quality of care and may also contribute to improved treatment adherence. Furthermore, our patients expressed concerns about the pharmacological therapy they were receiving, and many of them expressed fear due to possible surgical procedures in the future (26.5% and 61.1%, respectively). We find this information crucial, urging us physicians, together with our IBD nurses, to provide a more thorough explanation of all treatment options and to possibly alleviate any concerns they may have. This study did not find a statistically significant difference in the answers provided by conventional patients compared to those receiving advanced therapeutic options (biologics or small molecules), except in one instance. A larger percentage of patients receiving advanced therapeutic options felt their disease impacted their lives in periods of remission. This difference could be explained by the fact that a significant percentage of advanced treatment options required daily hospital administration, which consumed a considerable amount of time and reduced patients’ independence.
Inflammatory bowel disease is marked by frequent relapses that often require hospitalisation or staying at home. It is no surprise that some of our patients considered themselves to miss work more often than healthy individuals. They believed their employers were required to help them solve these issues, either by allowing them to work from home or offering flexible working hours. Previous research found similar results as, compared to the healthy population, IBD patients worked reduced hours more often, mainly due to a perceived lack of control over their symptoms [
26]. One European study [
27], including 4670 IBD patients, found that 40% of them had to adjust their work life due to illness, most often by switching to working from home or working reduced and flexible hours. The most prevalent reasons for absenteeism were fatigue, scheduled or emergency doctor’s appointments, and spasmodic abdominal pain. IBD’s negative impact on patients’ professional lives has shown a correlation with poorer quality of life in several studies [
22,
25,
27,
28]. Absenteeism, often coupled with high treatment costs, can present a significant financial burden for individuals and the countries they live in. Advancements in therapeutic options could not only mean better quality of life for patients but also significant savings for healthcare systems in their countries, regardless of the price of the drug itself [
29,
30]. Until then, educating the wider population about the challenges IBD patients face every day, together with advocating for systematic changes that allow them flexibility in work, may prove beneficial in the long run. Following this research, better cooperation was established between our institution and the Croatian Crohn’s and Ulcerative Colitis Association, a national association of patients with IBD, which has mechanisms to influence the improvement of working conditions for our patients.
The chronic nature of IBD, its prevalence in young people, and the need for long-term treatment present a burden these patients carry every day, which can negatively impact their mental state. Compared to the general population, research confirms a significantly higher frequency of anxiety and depression among patients with IBD, while defining their role as independent predictors of poorer quality of life [
31,
32,
33] and IBD-related disability [
34]. Authors Garcia-Alanis M. et al. [
31] have, with the use of diagnostic interviews, found 56.7% of patients in their group, a percentage much larger than in studies on the general population, suffer from at least one of the major mental disorders. Furthermore, research indicates that depression and anxiety, while not capable of causing IBD, might still promote disease exacerbations, which we can notice in everyday practice. Psychological morbidity can induce abnormal abdominal pain perception, sleep dysfunction, negative illness perception, and non-adherence to medication [
35]. The key takeaway from most studies was that examinations for psychological disturbances in IBD patients need to be conducted more often when taking a comprehensive approach to their treatment. Shortcomings in this area can be seen in the study by Engel K et al. [
24] which showed that 80% of recently diagnosed IBD patients felt they did not receive sufficient psychological support from their physician. The same study also showed a positive correlation between a good patient–physician relationship and patients’ quality of life. Our findings aligned with prior research, as our patients perceived themselves as underachievers and reported absenteeism due to emotional issues. Many expressed heightened stress levels, attributing frustration to their illness. A considerable number of patients stated they have anxious or depressive thoughts, underscoring a perceived lack of understanding and support from the people around them. Of particular concern was that a significant number of our patients felt a lack of empathy from their friends, coworkers, and, what particularly surprised us, their family. As physicians, we also have an important role in taking care of our patients’ mental health. Tight cooperation between gastroenterologists and psychologists or psychiatrists can prove very important in managing this often-neglected aspect of IBD. Unfortunately, due to obligations and a lack of time, we sometimes overlook this aspect and, when monitoring patients, rely more on biochemical parameters and selected clinical symptoms than on the patient’s general condition. After this research at our clinical hospital centre, we addressed this by including a psychiatrist as a constitutive member of our IBD team and making it a standard of care to refer every newly diagnosed IBD patient to them.
Fatigue, mental health issues, and malnutrition with a loss of muscle mass are all consequences of the chronic nature of IBD that can limit patients’ physical abilities. Only a few of our patients felt like their disease limited them from performing moderate activities such as climbing, walking long distances, or squatting. In contrast, a significant number of patients felt limited when performing intense activities. This followed the same results in previous research that found patients with IBD were less active than the healthy population, mainly due to symptoms like abdominal or joint pain or the fear of their onset [
36,
37]. Patients currently in severe, active phases of IBD are often in hospitals and thus cannot be physically active. However, individuals in remission or experiencing milder forms of IBD could benefit from physical activity, given its established role in complementing the treatment of other chronic diseases [
38]. The possible positive effects of exercise include improved physical and mental health, better nutritional status, higher bone density, and the restoration of muscle strength, all of which could lead to better quality of life. Although studies have shown that individuals with IBD tolerate physical activity, and that it can positively impact their quality of life, the ideal type of training for this population is not known [
36,
39]. For this reason, authors Erp et al. [
37] conducted a study with 25 patients with IBD in remission. All of them were invited to participate in a 12-week workout program specifically designed for them by a sports medicine specialist and under the constant surveillance of a physical therapist. Following 12 weeks of this program, participants showed a significant reduction in body fat percentage, enhancement in muscle strength, improved cardiovascular health, better results in quality-of-life questionnaires, and fatigue levels equal to those in the healthy population. To conclude, individuals with IBD have a significant benefit from targeted physical activity. Collaboration between their physicians and physiotherapists, or at the very least the availability of personalised programs, would positively impact their treatment and overall well-being. For instance, at the onset of an IBD diagnosis, a gastroenterologist should explain the importance of physical activity, alleviate anticipatory anxiety IBD patients might have regarding their symptoms and exercise, and refer them to a physiotherapist specialised in IBD patients, with a workout plan specifically tailored to their needs. At the same time, offering a nutritionist-approved diet plan may even further improve adherence.
This questionnaire has improved everyday clinical practice in our hospital by making us think about the patients’ quality of life even more, which is the first step in improving it. Communication with patients is vital for improving the quality of IBD treatment. Even when pressured by daily obligations, we cannot ignore quality of life when monitoring our patients, especially questions about faecal urgency and faecal incontinence, which are tremendously important for the quality of life of our patients. Our centre’s experience has demonstrated that IBD nurses play a crucial role in the team, significantly enhancing communication and, consequently, patient care. A multidisciplinary IBD team, including both a psychiatrist as a standard member and a psychologist (on demand), should be the standard approach. As we have shown in our patients, IBD Disk can also offer practical and fast insight into the patient’s general condition. Therefore, it can be provided to patients at set intervals to objectively evaluate their perception of their illness activity, and this can be performed entirely by an IBD nurse.
This study had several limitations. It was conducted in a single centre, the Sestre Milosrdnice Clinical Hospital Centre, and as such was limited to a smaller pool of patients and their relative lack of diversity. Furthermore, we chose to include patients treated with different therapeutic options but did not differentiate between them. We excluded all patients who underwent surgery; thus, this large group of patients was not represented in this study. Additionally, we were surprised by the large number of patients who felt misunderstood by their families. We believe more research needs to be undertaken to determine how different societal circumstances (e.g., family dynamics, marital status, economic status, type of occupation) impact quality of life. Lastly, sleep is a vital determinant of overall quality of life that was not adequately covered in this study. Since mental disorders that impact sleep are more prevalent in this group of patients, we believe this to be an important area for further research.