Abstract
Inflammatory bowel disease (IBD) has a negative impact on patients’ physical and psychological well-being, social performance, and working capacity, thereby worsening their health-related quality of life (HRQoL). Clinicians should take care of the patients’ global health, including the psychological, social, and emotional spheres. We aimed to investigate the reality of patient-reported outcomes of HRQoL in a series of IBD patients. Consecutive Crohn´s disease (CD) and ulcerative colitis (UC) patients in clinical remission were recruited. The survey consisted of the Short Inflammatory Bowel Disease Questionnaire (S-IBDQ), the Hospital Anxiety and Depression Scale (HADS), the Brief Illness Perception Questionnaire (B-IPQ), and a questionnaire dealing with impact of IBD on patients’ lives. Demographic and clinical characteristics were recorded. Of 202 participants (29% CD and 71% UC; 54% male; median age 48 years; mean disease duration 14 ± 11 years), 52% had poor HRQoL, 45% anxiety/depression, and 35% sleep disturbance and a high perception of disease (mean score 42.8 ± 14.3). In the multivariate analysis, a low HRQoL was rather associated with UC than CD (p = 0.037), IBD surgery (p = 0.010), disease duration (p = 0.01), sleep disturbance (p = 0.014), anxiety/depression (p = 0.042), and high illness perception (p = 0.006). IBD affected working performance and social activities in 62% and 74% of patients, respectively. Satisfaction regarding quality of care, biologics, and surgery approach were claimed in 73%, 69%, and 76% of patients, respectively. Although 84% of patients trusted their gastroenterologist, only 66% of them discussed IBD impact on HRQoL during visit. In a series of IBD patients in remission, the low HRQoL was significantly associated with surgery, disease duration, sleep disturbance, anxiety/depression, and high illness perception. Even though patients were satisfied with the quality of their care, it appears that clinicians should pay more attention to patients’ emotional status.
Highlights
Crohn’s disease (CD) and ulcerative colitis (UC) are the main types of inflammatory bowel disease (IBD), a collective term indicating a group of chronic intestinal disorders characterized by alternating periods of remission and relapse
In the case of chronic diseases like IBD, it is preferable to talk about health-related quality of life (HRQoL), which can be defined as the value assigned to the lifespan, taking into account the influence of limitations, changes in functional capacities, alterations of subjective perceptions, and impediments to social opportunities that an illness can determine [6]
From March 2019 to March 2020, a cross-sectional study was conducted at the U.O. of Pathophysiology of the Digestive System of the University Magna Graecia of Catanzaro (Catanzaro, Italy), in which patients with IBD in clinical remission were enrolled in order to assess their perceptions and unmet needs related to their HRQoL
Summary
Crohn’s disease (CD) and ulcerative colitis (UC) are the main types of inflammatory bowel disease (IBD), a collective term indicating a group of chronic intestinal disorders characterized by alternating periods of remission and relapse. There was a strong confirmation that HRQoL is poorer during active disease, this condition frequently persists during the quiescent phases of the disease [8] This means that mental and social well-being should be achieved beyond the absence of disease or physical infirmity and clinicians should take care of the patients’ global health, including the assessment of the psychological, social, and emotional spheres during routine visits [9]. In younger patients, poor HRQoL is often associated with negative illness perception, which is the subjective meaning that patients give to their disease [13] Another important aspect is the patients’ satisfaction with treatment and trust in their healthcare providers, both factors that could affect compliance with the therapy and follow-up visit program and represent a challenging issue for gastroenterologists [14]
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