The Impact of Inflammatory Bowel Disease in Canada 2018: Quality of Life

Jennifer L Jones, Geoffrey C Nguyen, Eric I Benchimol, Charles N Bernstein, Alain Bitton, Gilaad G Kaplan, Sanjay K Murthy, Kate Lee, Jane Cooke-Lauder, Anthony R Otley, Jennifer L Jones, Geoffrey C Nguyen, Eric I Benchimol, Charles N Bernstein, Alain Bitton, Gilaad G Kaplan, Sanjay K Murthy, Kate Lee, Jane Cooke-Lauder, Anthony R Otley

Abstract

Inflammatory bowel disease (IBD) has a substantial impact on quality of life. It causes considerable personal, emotional and social burdens. The impact of IBD on quality of life cannot readily be quantified as a cost; however, the impact places a significant burden on the patient and caregivers. Numerous studies have shown that health-related quality of life is impaired in patients living with IBD as compared with the general population. While disease activity and severity is an important driver of physical and mental health-related quality of life, patients may experience psychological distress even during clinical remission. Reduced quality of life can impact persons living with IBD as they pursue employment, family planning and personal milestones. Further, the impact of IBD extends to the patient influencing the quality of lives of those around them, including their caregivers. Improving quality of life requires a multidisciplinary approach that includes screening for and managing psychological distress. Adaptive coping mechanisms help manage illness perceptions and reduce psychosocial distress.

Highlights: Health-related quality of life (HRQOL) is an important measure of the global impact of IBD on a person's physical, mental and emotional well-being.Persons living with IBD have significantly lower HRQOL compared with that of the general population.Inflammatory bowel disease often affects individuals as they pursue employment, family building and personal milestones.Inflammatory bowel disease affects the quality of life (QOL) of those afflicted and their caregivers.Access to multidisciplinary, collaborative, chronic disease models of care improves the HRQOL of people living with IBD.

Key summary points: Inflammatory bowel disease impairs HRQOL by inhibiting need fulfillment (i.e., self-esteem, relationships, nutrition, hygiene and security) and causing psychological distress.Inflammatory bowel disease impairs interpersonal relationships, life activities, social participation and mental well-being.Patient symptoms like diarrhea and abdominal pain reduce HRQOL.While disease severity is an important driver of physical and mental HRQOL, patients experience psychological distress even during clinical remission.Psychological distress impairs work productivity and disrupts social activities and relationships.Patients with IBD experience emotional distress relating to factors such as loss of bowel control, impairment of body image, fear of sexual inadequacy, social isolation, fear of dependency, concern about not reaching one's full potential and fear of stigmatization.Families with children with IBD have impaired QOL as a collective-for example, parental stress from medical factors and child's perceived stress.Patients' perception of their illness affects their ability to adjust to a diagnosis of IBD. Adaptive coping mechanisms help manage illness perceptions and reduce psychosocial distress.Biologics are associated with improvement in long-term HRQOL in people with IBD.Patients with IBD should have access to multidisciplinary care, including mental health practitioners, to screen for and manage psychological distress.

Gaps in knowledge and future directions: Patients with IBD experience emotional distress that reduces HRQOL. Clinical tools are necessary to identify the key factors causing psychological distress in patients with IBD.HRQOL is reduced in individuals with IBD and their families. Studies should evaluate the cumulative burden of IBD on HRQOL in patients with IBD and their caregivers.Patient self-perception of their IBD influences their HRQOL. Clinical studies of interventions that improve adaptive coping are needed to reduce psychosocial distress.Multidisciplinary care including a psychologist to screen for and manage psychosocial risk and psychological distress should be evaluated in IBD clinics.

Keywords: Crohn's disease; Epidemiology; Inflammatory bowel disease; Quality of life; Ulcerative colitis.

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