males) whose median age was 36 years (range, 18-67 years), with a median follow up of 23 months (range, 10-35 months). The median LI at inclusion was 4.6 (range= 0.9- 31.3) and significantly decreased at the first year of follow-up (3.8, range= 0-29.4, P =0.0328), remaining stable thereafter (LI at the end of follow-up, 3.8, range=0-29.4, P=NS). At inclusion, the median value of IBD-Q was 158 (range= 63-192) and it significantly increased, after treatment induction, to a median value of 178 (range= 102-226, P<0.001). Following induction, IBD-Q remained stable and median IBD-Q values at the first year of follow-up (178, range= 69-223, P=NS) and at the end of follow-up (180, range= 69-223, P=NS) were unchanged. Conclusion In patients with CD, biological therapy determines a significant decrease in LI that is evident since induction, and which tends to be maintained also during follow-up. Improvement in LI is associated to an improvement in patients' quality of life.
Award Number Grants 5S21MD000242 and 5S21MD000138, National Center for Minority Health and Health Disparities, National Institutes of Health (NCMHD-NIH).
The Impact of Inflammatory Bowel Disease On Patients' Caregivers Aria Zand, Anya Platt, Welmoed K. van Deen, Daniel Hommes Background Crohn's disease (CD) and ulcerative colitis (UC) usually follow a relapsing clinical course with phases of remission alternating with periods of active inflammation. This dramatically affects the quality of life (QoL) of IBD patients and has been studied extensively. However, the impact on informal caregivers of IBD patients is regularly overlooked by clinicians. Caregivers - often family members or close friends - aid IBD patients with medical tasks and activities of daily life without receiving compensation. In this study, we aim to assess the burden associated with caregiving for an IBD patient, and to identify potential predictors of such impact that might inform future interventions. Methods Online questionnaires were distributed via email in November 2015 to adult IBD patients of the UCLA Center for Inflammatory Bowel Diseases and their self-identified caregivers. IBD patients filled out the Work Productivity and Activity Impairment questionnaire (WPAI), the short Inflammatory Bowel Disease Questionnaire (sIBDQ) for QoL and the Mobile Health Index (mHI) for disease activity. The caregivers filled out the Zarit Burden Interview (ZBI) and a caregiver version of the WPAI. Both groups provided information about their demographics and medical history. The survey results were then analyzed to assess caregiver burden in different subsets of IBD patient and caregiver populations. Results 51 IBD patients (41.7±13.9 years, 59% females, 82% employed, 47% CD) and 18 caregivers (45.5± 17.5 years, 61% females, 83% wife/husband of patient, 56% employed) responded thus far. Using the mHI, we calculated that 78% of the IBD patients were in remission. An average of 5.8±11 hours were spent on caregiving per week. Also, 22% of the caregivers suffer from a chronic disease. Furthermore, 30% of the employed caregivers had missed work hours as a result of caring for an IBD patient and 70% of the employed caregivers experienced decreased productivity at work due to caregiving. Use of the ZBI showed that 44% of caregivers experienced mild to moderate burden as a result of caregiving. Additionally, the ZBI showed that 67% of caregivers felt they could do a better job in caregiving. Conclusion The burden that caregivers face as a result of caring for IBD patients is possibly influenced by multiple factors, including both patient and caregiver characteristics. Our results show that, although a large majority of our IBD patients are in remission, a substantial impact remains on the productivity and emotional wellbeing of their respective caregivers. As this problem is frequently overlooked by clinicians, potential interventions might seek to provide caregiver support to those who care for IBD patients.
Tu2010 A Study of a Novel Pilot Program to Address the Psychosocial Needs of IBD Patients: Possible Impact on Disease Outcome and Reduction of Health Care Utilization Joshua R. Korzenik, Caitlin Hosmer Kirby, Leslee Kagan, Michael Currier, Beth-Ann Norton, Ashwini Nadkarni, Emily Collins, Carolann Gray, Molly A. Nestor, Lori A. Ashworth Background: The lifestyle and psychosocial needs of patients with inflammatory bowel disease (IBD) are complex, and represent an opportunity for intervention by a multidisciplinary care team. Indeed, modifiable factors such as nutrition sleep, stress, exercise, and health education may affect disease activity in IBD. Patients with IBD have higher rates of anxiety and depression which often go untreated. Further, these factors have been suggested to drive healthcare utilization. We developed a pilot project to assess the feasibility and efficacy of an integrated effort to address these needs and promote patient engagement in care. Methods: A comprehensive program was designed to assist patients in psychosocial areas and provide them with tools to be more actively involved in their care. The program included social work and psychiatric evaluation, a mind-body stress management and lifestyle program, nutrition counseling, and health education. Each patient's treatment plan was personalized based on individual goals and needs as determined by the patient and social worker. However, all patients met with the social worker, nutritionist and health educator at least twice during the program, and often more frequently. Enrollment was offered to IBD patients who met at least one of the following criteria in the previous year: 2 or more hospitalizations; 4 or more clinic visits; 3 or more ER visits; or new patient presenting with active disease. Assessments were directed at healthcare utilization and disease outcome using validated questionnaires. Results: To date, 41 patients (26 CD, 13 UC, 2 IC) have enrolled in and completed the yearlong pilot study with an average age of 39 (19-73) and disease duration of 12.6 years (0.6-45.1). While the study was uncontrolled, significant clinical impact was noted in healthcare utilization and disease outcome measures. Over the course of the year, disease activity scores reduced at month 12 compared to baseline by 32% (HBI and SCCAI). A reduction in steroid use was demonstrated with 21 of 41 participants on steroid therapy at baseline and just 5 at month 12. The subgroup with anxiety had a marked reduction in anxiety scores from 9.2 to 6.6 (GAD) and depression scores (BDI) from 14 to 8.3. Quality of life scores as assessed by IBDQ increased as well (136 baseline to 159 at end of study). Healthcare utilization was reduced in the yearlong study period compared to the previous 12 months with reduction in days in hospital for IBD (235 days vs.127 total hospital days for the group) and fewer imaging studies performed (85 to 60). Conclusion: An integrated comprehensive approach to IBD addressing patients broader needs may offer the opportunity to improve outcomes in medical and psychosocial domains and also reduce IBD related costs.
Tu2013 Assessing Patient Knowledge of Tobacco's Impact on Disease Course and Medical Efficacy in IBD Kelly C. Cushing, Adeeti J. Chiplunker, Noor J. Al-Hammadi, Alexandra Gutierrez Background: Tobacco use decreases response and durability of response to medical therapy. Education about the impact of tobacco on medical efficacy is an important, modifiable area of disease management. Aim: To determine patients' knowledge of tobacco's impact on inflammatory bowel disease (IBD) course and medical efficacy among both former and current smokers Methods: This was a survey-based study of outpatients at a tertiary care IBD clinic. Demographics collected included age, sex, disease type, duration of disease, smoking history, and prior IBD-related surgery. Degree of smoking dependence in current smokers was measured with the validated Fagerström Test for Nicotine Dependence (FTND). All patients were asked four true/false questions relating to tobacco's impact on disease relapse, severity of relapse, need for steroids, and efficacy of medications. Results: 237 patients were enrolled (168 Crohn's Disease (CD), 69 Ulcerative Colitis (UC)). The CD cohort had a higher numbers of females, longer disease duration, and more IBD related surgeries than the UC cohort (p £ 0.005). There were no differences in number of packs per day consumed, number of active and former smokers or the FTND score (Table 1). Those with CD were more likely to be aware that tobacco increases the risk of disease flare (p<0.001) as well as the severity of the disease flare (p<0.001). CD patients also had a better understanding of the negative influence of tobacco on IBD medication efficacy (p=0.003) and increased need for steroids (p=0.007). Patients with a history of IBD-related surgery had a better awareness that tobacco increases the risk of disease flare (p=0.002), increases the severity of disease flare (p<0.001), and decreases the efficacy of IBD medications (p= 0.037). Those with a history of IBD-related surgery did not differ from those with no IBD surgery in their awareness of increased need for steroids with tobacco use (p=0.429) When segregated by disease type, no significant differences in knowledge existed based on presence of prior IBD-related surgery. When evaluating dependence and educational awareness, no differences existed in knowledge based on the FTND score. Former smokers were more likely to be aware that tobacco increases the risk of a disease flare when compared to current smokers (p=0.047) but there was no difference in knowledge of increased severity of flares, increased need for steroids, and decreased efficacy of IBD medications. Conclusions: Differences in patient knowledge of tobacco's impact on disease activity and medical efficacy exist between CD and UC as well as between those who have had IBD related surgery and those who have not. UC and surgery naïve patients represent a group of patients who would benefit from more focused efforts at education regarding smoking and IBD, particularly in its impact on medical efficacy.
Tu2011 Sexual Dysfunction in Puerto Rican Hispanic Females With Inflammatory Bowel Disease: A Pilot Study of the Upr Center for IBD Paola K. Perez-Rodriguez, Juan M. Marques-Lespier, Adriana Ortiz, Natalie Emanuelli, Grace Viñas-Joy, Esther A. Torres Objective: Quality of life (QoL) may be seriously affected in patients with Inflammatory Bowel Diseases (IBD). Studies support addressing this issue as part of the management of these patients. Intimacy, body image, and sexual activity are some of the aspects of life affected by this disease that impact QoL. The aim of this study is to evaluate sexual function in Puerto Rican females with IBD. Methods: In this cross-sectional study, females at the UPR Center for IBD with a definitive diagnosis of IBD were invited to complete the Female Sexual Function Index (FSFI) questionnaire anonymously. This questionnaire has been translated and validated in Spanish. It evaluates sexual function in six domains, including desire, excitation, lubrication, orgasm, satisfaction, and pain. A score of 26.55 points or less on a 36 point scale has been defined as sexual dysfunction. Data was analyzed by diagnosis (Crohn's Disease (CD) vs Ulcerative colitis (UC)), stoma status, and age. Student's t test and ANOVA analysis were used to subject sociodemographic and clinical characteristics and FSFI scores between groups. Statistical analyses were performed using STATA v13. The study was approved by the Medical Sciences Campus Institutional Review Board (protocol #1250914). Results: 100 female subjects answered the FSFI questionnaire. The mean age of the study participants was 41.2 (SD ±15.1, range 21-87). The mean sexual function score was 21.92 (95% CI: 20.08-23.76). No statistical difference was observed in the FSFI overall score between subjects with CD and UC (p=0.084). Subjects with UC obtained a lower score in the desire domain when compared with those with CD (p=0.023). No significant differences were observed between CD and UC in the other domains. In terms of stoma status, no significant difference was observed in the FSFI scores (p=0.891). Sexual function decreased with age (p=0.001); excitation, lubrication, orgasm, and satisfaction domains were the most affected (p<0.05). Conclusion: Our study shows sexual dysfunction in subjects with IBD. Sexual dysfunction was observed in subjects regardless of disease etiology, stoma status or age, and increased with age. Poor sexual function may significantly affect QoL in patients with IBD. More studies, both in female and male patients with IBD, are warranted. Health Professionals treating patients with IBD need to be aware of these findings so they may explore these concerns among individuals with this disease and develop strategies to address them. Support: Endowed Health Services Research Center, UPR School of Medicine,
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