Gastroenterology
Crohns Disease
Effects of Crohn’s Disease on Patient Quality of Life
<p>Effectively managing Crohn’s disease (CD) goes far beyond simply treating gut inflammation. From persistent fatigue and emotional distress to family impacts and work productivity loss, this article explores why a whole-person approach is essential to truly support patients living with CD.</p>
When we think about CD, the first things that come to mind are probably abdominal pain and diarrhea. These are the cardinal symptoms. Even just these symptoms alone can be incredibly impactful on a patient’s quality of life (QOL) and can affect social functioning and psychological well-being, leading some people to become isolated. It is best to think of CD as a disease of bowel inflammation but with systemic manifestations. Some patients with CD experience joint aches, skin issues, or even eye inflammation, and these extraintestinal manifestations can have their own impacts on QOL. CD treatments themselves can also affect QOL. Corticosteroids, for example, can cause insomnia, anxiety, mood swings, weight gain, and acne. Through every dimension, whether it is the disease itself, associated conditions, or treatment, CD can have an impact on QOL.
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More broadly, CD can also lead to fatigue. Being fatigued has a wide variety of effects on QOL, including effects on one’s ability to complete everyday activities, physical endurance, cognitive function, work or school engagement, absenteeism, and presenteeism. These can have potential direct effects on income, education, and social isolation, and all these interrelated issues can affect both mental health and QOL in patients with CD.
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In individuals with CD, fatigue is highly associated with the state of bowel inflammation (ie, when inflammation is alleviated, some patients will have some relief from fatigue). However, fatigue in CD is multidimensional and can stem from the inflammation itself or from associated factors such as disrupted sleep, nutritional deficiencies, or anemia. Therefore, addressing fatigue is a matter of not only treating inflammation but also addressing these other possible causes.
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Validated QOL questionnaires such as the 12-item Short Form Health Survey and the Short Inflammatory Bowel Disease Questionnaire can be administered to assess QOL, but, in a typical practice, these may not be practical. The health care provider needs to be sensitive to the broader impacts of the disease beyond the disease symptoms. Open-ended questioning about a patient’s daily living and mood can help guide the discussion to understand what exactly they are experiencing. It is also important to be attuned to the patient’s speech and body language as they discuss their illness. Finally, we cannot forget the impact on families. If a parent has CD, their ability to function in family roles is affected, and sometimes family members provide insights into things that the patient does not tell you.
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We are fortunate to have a multidisciplinary team at Mount Sinai that includes social workers and a gastrointestinal health psychologist to support our patients with CD. We have even developed a resilience training program to help people build coping strategies. Ultimately, identifying which aspects of life are being affected by CD is essential to tailoring care, and, whether it is through psychosocial support, nutritional counseling, or exercise programs, we need to take a holistic approach.
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