HEALTH-RELATED QUALITY OF LIFE IN PATIENTS WITH INFLAMMATORY BOWEL DISEASE

Maria Tsoukka^1,2, Eleni Jelastopulu^1,3, George Charalambous^1,4

¹Postgraduate Program in Health Management, Frederick University, Nicosia, Cyprus

²General Hospital of Larnaca, Larnaca, Cyprus

³Department of Public Health, School of Medicine, University of Patras, Greece

⁴General Hospital of Athens “Hippocratio”, Athens, Greece

INTRODUCTION

Inflammatory Bowel Diseases (IBD) are clinical entities characterized by chronic relapsing immune activation and inflammation of the gastrointestinal tract. The main forms of these chronic diseases are Ulcerative Colitis and Crohn’s Disease. Crohn’s Disease may affect any part of the digestive tract, while Ulcerative Colitis affects only the large intestine. Both conditions follow a course of remissions and flare-ups, and their impact on patients’ daily lives is immediate (Baumgart and Carding, 2007). These diseases significantly affect patients’ Quality of Life (Pontes et al., 2004).

The traditional method of assessing the severity of IBD does not include the overall impact of the disease on the patient's health, nor does it take into account the patient's own perception of their illness. Chronic diseases create challenges that extend beyond morbidity and affect the daily life of those living with them.

Their overall health status is determined not only by clinical assessment, disease severity, and disease activity, but also by factors such as psychological well-being, professional, social, and intimate relationships, cultural beliefs, and especially the complications and side effects of treatment (Giakoumidakis et al., 2011; Mouzas and Pallis, 2001).

By identifying the factors associated with poor Quality of Life, valuable information can be obtained regarding how the disease affects all aspects of a patient's health. This can assist healthcare professionals in addressing patients’ problems effectively and contribute to better long-term outcomes (Bowling, 1995).

Inflammatory Bowel Diseases (IBD)

Inflammatory Bowel Diseases are chronic disorders of the digestive system characterized by periods of remission and relapse. The main phenotypes of IBD are Crohn’s Disease and Ulcerative Colitis (Cosnes et al., 2011).

The exact cause remains unknown. The prevailing theory suggests that chronic inflammation results from a complex interaction between genetic predisposition and various environmental factors. Recent studies have identified several locations within the human genome that predispose individuals to developing these diseases, although these genetic factors alone are insufficient to cause them.

Additional influences are required, including viruses, bacteria, smoking, anti-inflammatory medications, food preservatives, changes in dietary habits, psychological stress, and abnormal immune system responses. The role of psychological factors remains controversial but may contribute to acute relapses in patients with established disease (www.efcca.org).

Health-Related Quality of Life

The concept of “Quality of Life” as an aspect of health was first introduced in 1948 by the World Health Organization (WHO), which defined health as a state of complete physical, mental, and social well-being and not merely the absence of disease or disability (Bjornson and Mitchell, 2000).

At one point, it became widely accepted that traditional morbidity indicators used to evaluate health interventions provided only limited information. This led researchers to seek additional methods for assessing health status, particularly subjective perceptions of health, including Quality of Life (QoL). The term was developed to encompass aspects closely related to medical care and health-related experiences (Verissimo, 1995).

To better understand and measure the impact of disease on Quality of Life, the concept of Health-Related Quality of Life (HRQoL) was introduced. According to Drossman, HRQoL is a general assessment of the patient's perception of their illness, how it affects their activities, and its impact on psychological and social functioning (Moons, 2004 & Juniper et al., 2001).

According to Hatziagorou et al., HRQoL can also be described as the ability of a patient to perform daily life activities that reflect physical, social, and psychological well-being, as well as the satisfaction derived from their level of functioning and symptom control (Hatziagorou et al., 2002).

Health-Related Quality of Life refers to the subjective experiences and preferences expressed by individuals or groups concerning identifiable and significant aspects of their health status (Till et al., 1992).

There are many definitions of HRQoL. Most share a common focus on the impact of disease and treatment on social, emotional, and physical well-being (Ware et al., 1980), while others emphasize how disease affects a person's ability to achieve a satisfactory life (Spitzer et al., 1981).

HRQoL can therefore be used to classify patient problems, facilitate communication, identify potential concerns, monitor disease progression, understand patient perspectives, and evaluate treatment outcomes (Bowling, 1995).

Potential Factors Affecting Quality of Life in Patients with IBD

Psychosomatic Factors

Various researchers have reported that inflammatory bowel diseases, UC and CD, may partly constitute a psychosomatic illness (Tocchi, 1997 & Engel, 1955).

It is believed that the association between psychological factors and IBD is not a new concept. Historically, it emerged in the 1930s through gastroenterologists and psychiatrists who argued that emotional factors, life events, and personal experiences could be related to the worsening of IBD symptoms (Keefer, et al., 2008). At that time, IBD was considered a psychosomatic illness, and its relationship with stress and other psychological factors was viewed as so strong that researchers did not consider it necessary to include control groups in their studies. Several decades later, these findings were largely challenged due to methodological weaknesses and uncontrolled studies published in this field (Keefer, et al., 2008 and Mounder & Levenstein, 2008).

However, authors of major gastroenterology textbooks argue that psychological factors are a consequence rather than a cause of inflammatory bowel diseases and do not contribute to their etiology (Shearman, et al., 1997 and Feldmanm, et al., 2002). Therefore, according to these observations, depression and anxiety in IBD patients are considered more likely to be consequences of the chronic nature of the disease or side effects of treatment (e.g., interferon-ribavirin and depression) rather than etiological factors of the disease itself (Scharschmidt & Feltman, 1993).

Although these views remain controversial, it is noted that patients with IBD suffer more frequently from psychological disorders than healthy individuals. In general, the prevalence of anxiety and depression is significantly higher among people with gastrointestinal diseases than in the general population and is estimated at approximately 30% (Derogatis & Wise, 1989 and Harter, et al., 2003). Specifically, in inflammatory bowel diseases, anxiety and depression rates have been estimated at 29–35% during remission (Mittermaier, et al., 2004 & Andrews, et al., 1987), and as high as 80% for anxiety and 60% for depression during disease flare-ups (Addolorato, 1997).

The high prevalence of these accompanying psychological disorders has been used to support the assumption that a patient’s psychological state may play a role in the etiology and/or clinical course of IBD. This hypothesis is further supported by prospective studies in which researchers observed relationships between depression, disease progression, and response to standard medical treatment (Mittermaier, et al., 2004 & Persoons, 2005). In addition, numerous studies have linked stress to IBD flare-ups (Anton, 1999 and Schwartz & Schwartz, 1982).

To date, there is no cure for certain inflammatory bowel diseases, and available treatments focus on managing inflammatory flare-ups with the aim of maintaining remission (Nahon, et al., 2011). Although the etiology of IBD remains unknown, it is believed that the disease results from interactions between genetic, immunological, and environmental factors (Cosnes, et al., 2011). These factors interact in such a way that, in genetically predisposed individuals, environmental triggers initiate immune dysfunction and intestinal symptoms (Neuman, 2007). One of these environmental triggers may be psychological factors, particularly psychological stress.

Clinical observations have shown that stressful experiences may adversely affect the course of IBD. Furthermore, many studies today emphasize the relationship between stress and IBD (Keefer, et al., 2008 and Mounder & Levenstein, 2008). Thus, although the role of stress in the onset of IBD has not been established, there is little doubt that stress acts as a triggering and aggravating factor in relation to disease progression and symptoms (Camara, et al., 2009; Mounder & Levenstein, 2008; Hisamatsu, et al., 2007; and Drossman & Ringel, 2004). Indeed, it may be considered one of the determining factors for disease relapse (Hisamatsu, et al., 2007; Bitton, et al., 2003; and Mawdsley & Rampton, 2005).

In patients with IBD, the unpredictability, uncertainty, and chronic course of the disease can lead to a broad range of psychological and interpersonal concerns, including loss of bowel control, bloating, altered body image, fatigue, fear of sexual rejection, social isolation, fear of being unable to meet social obligations, and feelings of uncleanliness (Drossman & Ringel, 2004 and Kiebles, et al., 2010). Certain symptoms, such as fecal incontinence, diarrhea, and bowel control issues in general, may lead to reduced self-esteem and stigmatization of these patients (Casati & Toner, 2000 and Cooper, et al., 2010).

Patients with IBD and the Use of Healthcare Services

The emphasis in healthcare in general, and in medical practice in particular, is shifting toward the multifactorial management of chronic conditions rather than focusing solely on acute problems. The focus is moving away from treatment alone toward health promotion and prevention, and from disease-centered medicine to patient-centered medicine (Van De Brink, 2001). A patient facing a significant health problem often experiences cognitive confusion, influenced by a complete or partial lack of knowledge and inability to fully understand the condition, as well as by perceptions of the healthcare system to which they have turned for help. Patients also experience emotional turmoil, as illness represents a significant threat to personal identity and a loss of control (Panagopoulou & Benos, 2004).

Every patient expects not only their physical condition to be addressed but also all of the aforementioned concerns. They want to listen and understand, while also being heard and feeling understood (Panagopoulou & Benos, 2004).

Clinical quality assurance is defined as <> (HMSO, 1989).

According to Urden L.D. (2002), <>. However, despite the extensive literature on the subject, its integration into everyday practice remains limited (Verissimo, 1996). In clinical practice, there has been some skepticism regarding the adoption of Health-Related Quality of Life (HRQoL) measures in routine care, particularly because they involve human characteristics alongside laboratory data and endoscopic findings. HRQoL can be considered a primary goal of therapeutic intervention in chronic diseases, aiming to improve patients’ quality of life. Ultimately, it should serve as the benchmark for evaluating the effectiveness of any intervention.

In contrast, disease activity indices used in IBD have been shown to be relatively insensitive and may even conflict with patients’ own perceptions of their condition (Garrett & Drossman, 1990). On the other hand, methods that assess HRQoL in conjunction with clinical disease activity have been strongly associated with improved well-being and reduced use of healthcare services (Drossman et al., 1989). In other words, quality of life, compared with clinical assessment alone, is a better predictor of healthcare utilization (Drossman et al., 1989; Ware et al., 1986).

RESEARCH IN CYPRIOT IBD PATIENTS

Inflammatory Bowel Diseases (IBD), as chronic medical conditions, negatively affect the Quality of Life of patients compared with the general population. Assessing their Quality of Life is a fundamental prerequisite for evaluating their needs and designing appropriate healthcare services. The purpose of this study was to investigate the Quality of Life of patients with IBD and the factors that may influence it.

The research methodology was quantitative and, from a research design perspective, constituted a non-experimental cross-sectional study. The sample consisted of 100 IBD patients, of whom 39% had Crohn’s Disease and 61% had Ulcerative Colitis. Data collection lasted two months and was carried out using the Greek version of the Short Inflammatory Bowel Disease Questionnaire (SIBDQ) for Quality of Life assessment, along with a specially designed form recording demographic and general characteristics. These questionnaires were personally distributed by the researcher to participating patients.

The Quality of Life of patients with Crohn’s Disease and Ulcerative Colitis was compared, both collectively and separately, in relation to factors that may influence it (gender, age, marital status, occupation, etc.). Statistical analysis was conducted using the Statistical Package for Social Sciences (SPSS v.20.0), with a significance level of α ≤ 0.05.

Using multiple linear regression analysis, the study found that patients with Ulcerative Colitis had higher Quality of Life scores compared with patients suffering from Crohn’s Disease. Quality of Life was also found to be higher among patients with a shorter disease duration and among self-employed individuals.

When examining the dimensions of Quality of Life measured by the SIBDQ (physical, psychological, and social), patients with Ulcerative Colitis were found to have poorer Quality of Life in the physical and psychological dimensions when gender and age were considered as independent variables, compared with patients with Crohn’s Disease. Conversely, patients with Crohn’s Disease demonstrated poorer Quality of Life in the psychological dimension when marital status was considered as an independent variable, while showing improved Quality of Life in the social dimension in relation to pharmacological treatment.

CONCLUSIONS

In conclusion, high-quality healthcare services that respond to the needs and expectations of healthcare users should be considered a priority. Quality, as a multidimensional concept, contributes to a better understanding of patients’ real needs when properly assessed. Evaluating the Quality of Life of patients with IBD (as well as all patients with chronic illnesses) and the factors affecting it is a fundamental prerequisite for the appropriate planning of healthcare services.

The Quality of Life of patients with IBD is significantly impaired compared with that of the general population. This can be attributed both to the pathophysiology of IBD and to its impact on patients’ daily lives and lifestyles. When comparing Crohn’s Disease and Ulcerative Colitis, patients with Crohn’s Disease appear to have poorer Quality of Life than those with Ulcerative Colitis. This is likely due to the more severe symptom burden and more frequent complications associated with Crohn’s Disease, resulting in more frequent use of healthcare services and consequently a greater impact on Quality of Life. These factors may explain this finding, as well as the observation that self-employed patients in this study reported better Quality of Life.

The long duration of IBD, uncertainty regarding disease progression, medication effects, symptom burden, and the overall challenges faced by these patients are factors that may explain why individuals with a shorter disease duration reported a better Quality of Life.

The integration of HRQoL assessment into everyday practice, together with clinical evaluation, laboratory data, and endoscopic findings, should be regarded as a primary objective in the therapeutic management of patients with IBD. Establishing a close and effective relationship between healthcare professionals and their patients, demonstrating sensitivity and responsiveness to patients’ concerns regarding IBD, providing information tailored to their needs, and ensuring appropriate education regarding their condition and treatment plans can reduce anxiety, uncertainty, and dependence on the healthcare system. At the same time, these measures contribute significantly to improving all dimensions of their Quality of Life.

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