IBD in Young Adult Patients: Perceived Impact on Daily Life Activities

Abstract

Introduction: Inflammatory bowel disease (IBD) features relapsing and chronic symptoms that can profoundly impact patients’ lifestyle. We sought to identify the degree to which young adults with IBD felt limited in their daily life activities because of their disease. Methods: Male and female IBD patients between ages 18-35 followed at our institution were invited to participate in a 74-question anonymous online survey. We present here the results of the questions aimed at assessing the overall impact of IBD on daily life. Results: Sixty-eight patients completed the anonymous survey, ulcerative colitis (UC) (n=41), Crohn’s disease (CD) (n=27). Patient-reported disease severity was as follows: mild-29%, moderate-52%, and severe-19%. Patient-reported disease activity as “in remission most of the time”-51%, “often active”-24%, and “active most of the time”-15%. Treatments included biologics (41%), immunomodulators (17%), and mesalamine (35%). Up to 49% of the 68 patients felt their day was affected by their symptoms, whether they rated their disease as severe (82%), moderate (45%), or mild (37%). Perceived disease control and severity was significantly associated with the perceived disease impact on daily life (X2=13.1; p=0.0422). Up to 68% of patients with self-reported mild disease worried that a flare would force them to stay home a few times each month; 25% cancelled plans more than once a month because of symptoms, and 30% avoid making plans to go out from fear of having symptoms. When out with friends, patients worried about having abdominal pain and diarrhea (75%), fatigue (57%), incontinence (27%), and nausea/vomiting (13%). Up to 50% felt limited in what they can eat outside their home. Patients avoided travels that included plane (26%), long distance car/bus ride (45%), and international itinerary (44%) due to: fear of limited access to the bathroom (64%), fear of having a flare (62%), limited food choice and access to medications (40%). Up to 65% of patients felt irritable/depressed more than once a month, and 33% felt they are a burden to others. Up to 57% felt “different” than their peers, and 71% felt they were missing out on the “normal youth activities”. Conclusion: IBD has a significant impact on young adult lifestyle; the degree to which IBD affects their daily life correlates with their assessment of disease severity and activity. These are issues important to address and discuss when caring for young IBD patients.