The effects of inflammatory bowel disease on caregivers: significant burden and loss of productivity.

BACKGROUND: Caregiver burden is the emotional, physical, practical, and/or financial burden associated with taking care of a patient with a chronic condition. Limited literature on caregiver burden in Inflammatory Bowel Diseases (IBD) has accounted for some predictors, but its effect on work productivity (absenteeism and presenteeism) is unknown. METHODS: In a prospective study, patients and their respective caregivers were surveyed from November 2015 until July 2017. Data on demographics, work productivity, quality of life, disease activity, caregiver burden and productivity were collected. The burden on caregivers was assessed and associations between caregiver productivity and caregiver burden were analyzed. Additionally, predictors for caregiver burden were identified. RESULTS: One hundred two IBD patients and their respective caregiver were included. In total, 39% of IBD caregivers experienced burden. Caregivers with burden experienced significantly more absenteeism and presenteeism (65 and 85% respectively). Furthermore, 51% of caregivers felt that they should be doing more for their care recipient and felt they could do a better job at caregiving. Predictors of burden included race/ethnicity, history of fistulas, diagnosis of ulcerative colitis, higher caregiver education, and hours spent caregiving. CONCLUSION: Caregivers with burden had significantly more productivity decrease compared to those without burden. Additionally, the majority of caregivers feel they should be providing more and better care for their recipients. The development of strategies to address caregiver's distress and perceived burden when caring for IBD patients is warranted.

Patient Experiences and Outcomes of a Telehealth Clinical Care Pathway for Postoperative Inflammatory Bowel Disease Patients.

Background:Despite advancements in treatment for inflammatory bowel disease (IBD), surgery remains inevitable for patients and IBD management is costly.Introduction:Frequent postoperative monitoring is needed for early detection of both short-term complications and long-term disease recurrence. We developed a care pathway for postoperative home monitoring of IBD patients using telehealth applications.Materials and Methods:We performed a retrospective cohort study with a matched control group to assess the efficacy of the Tight Control Surgery Scenario (TCSS), a 4-week postoperative care pathway. IBD patients aged 18 or older who underwent an IBD-related intestinal operation between October 2013 and December 2015 were eligible. Enrolled participants submitted postsurgical questionnaires and wound photos through e-mail. We measured patient satisfaction with the care pathway and assessed its impact on 30-day postoperative hospital readmission rates, emergency department (ED) visits, and gastroenterologist (GI)-related office visits.Results:Sixty-four (n) cases were enrolled in TCSS and matched to 64 historic controls. Patients who completed the additional evaluation survey expressed overall satisfaction. Readmissions, 30-day ED rates, and GI visits were numerically higher in cases compared with controls, but this difference was not statistically significant.Discussion:TCSS demonstrates the feasibility of implementing a telehealth care coordination platform for postsurgery IBD management. Patients with more complications may have sent in more photos due to greater concern for maintaining their health.Conclusions:Implementation of TCSS for easy home monitoring is feasible. While we did not see reductions in ED visits, GI follow-up visits, or readmissions, patient satisfaction was high, thus demonstrating its feasibility for telehealth applications.