Impact of Inflammatory Bowel Disease on Patients' Caregivers: Results From a French Survey.

BACKGROUND: The impact of inflammatory bowel disease (IBD) on caregivers has rarely been investigated. Our work aims to explore the burden of IBD on the different aspects of caregivers' lives. METHODS: We conducted an online survey via the social network of the French IBD patient organization addressed to patients' caregivers who were asked to fill in a questionnaire covering the impact of the disease on different aspects of their lives. Impacts were measured by a visual analog scale (VAS). A VAS score ≥5 of 10 was considered significantly high. We then performed uni- and multivariate analyses of predictors of higher impact on parents and partners, separately. RESULTS: A total of 853 caregivers participated, predominantly women (77%). The mean age was 48.5 years. Their relationship with the patient was mainly parents in 57.1% and partners in 30.6%. The type of IBD was Crohn's disease in 63% and ulcerative colitis in 35%. The psychological burden was the highest among parents and was mainly correlated with a lack of knowledge about IBD and professional compromise (P < .05). The impact on leisure was the highest among partners and was affected by psychological, sexual, and professional burdens (P < .05). About 50% of partners experienced an absent sexual relationship for weeks/months and decreased libido regardless of IBD type. Professional impact was greater in parents compared with partners, and 36% of caregivers needed work arrangements. CONCLUSIONS: IBD has a high impact on different aspects of life of patients' caregivers. Therefore, interventions to reduce the disease burden in this population are needed.

Caregivers of patients with inflammatory bowel disease go through many psychological, social, and professional difficulties. Implementing adequate psychosocial interventions may improve their quality of life.

French experience with telemedicine in inflammatory bowel disease: a patients and physicians survey.

BACKGROUND AND AIMS: The use of telemedicine dramatically increased during the COVID-19 pandemic. We collected patients and physicians experience on telemedicine in the field of inflammatory bowel disease (IBD). METHODS: We conducted a nationwide survey between September 2020 and January 2021. A self-administered questionnaire was sent to participants through mailing lists of the national patients' association and IBD expert groups. RESULTS: Overall, 300 patients and 110 gastroenterologists filled out the survey. On a 10 points scale of satisfaction with telemedicine, 60% of patients noted a score ≥8 and 52.7% of physicians ≥7. Patients and gastroenterologists felt that the duration of teleconsultations appeared to be shorter than in-person visits in 57.5 and 55.1% of cases, respectively. All participants agreed that telemedicine is appropriate in dedicated situations and not for flare-up consultations. For 55.1% of patients, quality of care was the same via telemedicine, whereas 51.4% of gastroenterologists believed they managed less well their patients. Lack of clinical examination being pointed out as the main limitation of telemedicine. Three-quarters of patients and gastroenterologists would agree to use telemedicine more often in the future. CONCLUSION: Patients and gastroenterologists were satisfied with telemedicine and would be willing to use it in the future. However, telemedicine does not replace in-person visits and should be discussed on a case-by-case basis.

Perspectives From Patients and Gastroenterologists on De-escalating Therapy for Crohn's Disease.

In Crohn's disease, combination therapy with anti-tumor necrosis factor (anti-TNF) agents and azathioprine/mercaptopurine has been shown to be superior to monotherapy with one of these treatments alone.1 This combination has its best success rate when used early in the course of treatment.2 However, because of the significant cost of these drugs and concerns over long-term side effects,3,4 many patients and providers often ask about stopping one or both of these medications.

Impact of inflammatory bowel diseases on working life: A French nationwide survey.

BACKGROUND: Inflammatory bowel diseases (IBD) affect working-age patients. Data was lacking concerning the impact on working life. AIMS: The French IBD patient association conducted a nationwide survey to assess the burden of IBD at work. METHODS: An online survey was performed in 2016, targeting IBD patients working or having worked previously. The results were compared to those observed in the general population. RESULTS: Data from 1410 IBD patients were analyzed (62% Crohn's disease, 35% ulcerative colitis). Four-fifth of respondents were actively employed. Half of them stated that working with IBD was a problem. Compared to the general population, IBD employees had higher rates of permanent contracts, public employment but also of part-time contracts, and highly graduated patients were less likely to reach high qualified jobs. Among the disabling symptoms at work, fatigue was the most frequent (41%) followed by diarrhea (25%) and fecal incontinence (18%). Despite these difficulties, 76% were satisfied with their job. Most patients shared their IBD diagnosis with their colleagues, but 25% of them regretted it. CONCLUSION: IBD has a strong negative impact on working life. While work satisfaction remains high, IBD affects career plans, highlighting the need for supporting measures to improve patients' work experience.

Patient-reported Outcomes in a French Nationwide Survey of Inflammatory Bowel Disease Patients.

BACKGROUND: Patient reported-outcomes [PROs] are a major therapeutic goal in inflammatory bowel disease [IBD]. METHODS: Between January and June 2014, patients affiliated with the French national IBD association filled out six self-questionnaires: quality of life 9QoL, according to the Short Inflammatory Bowel Disease Questionnaire [SIBDQ] and the Short-Form-36 Questionnaire [SF-36] v2); fatigue (the Functional Assessment of Chronic Illness Therapy-Fatigue [FACIT-F]); work productivity (the Work Productivity and Activity Impairment [WPAI] questionnaire); disability [the I nflammatory Bowel Disease Disability Index]; and anxiety/depression (the Hospital Anxiety and Depression scale [HADS]). Associated factors were identified by univariate and multivariate logistic regression analyses. RESULTS: Datasets were obtained from 1185 IBD patients. Around half of patients reported poor QoL [SIBDQ <45: 53.3%], severe fatigue [FACIT-F <30: 47.4%] and/or depression [HAD-D >7: 49.4%]. One-third of the patients reported anxiety [HAD-A >7: 30.3%] and/or moderate [22.4%] or severe [11.9%] disability. About half of them reported presenteeism and moderate-to-severe loss of work productivity and loss of activity. Poor QoL, severe fatigue, severe disease-related disability, and/or high WPAI were all associated with female gender, unemployment, and disease activity. Poor QoL, severe fatigue, and high WPAI were also associated with the use of tumour necrosis factor antagonists. A history of surgery was associated with poor QoL, whereas age was associated with severe fatigue. Severe depression was associated with female gender and disease activity. CONCLUSIONS: The disease burden is very high in IBD, with poor QoL, fatigue, work impairment, and depression in half of patients. Marked disability and anxiety were reported by one-third of patients.

Impact of complementary and alternative medicine on the quality of life in inflammatory bowel disease: results from a French national survey.

BACKGROUND: Complementary and alternative medicines (CAM) are widely used by patients with inflammatory bowel disease (IBD). Few data have been published on the impact of CAM on the quality of life (QOL). AIMS: The aim of the study was to describe CAM use in French patients with IBD, identify characteristics associated with CAM use, and assess the impact of CAM on the QOL. METHODS: We conducted an internet survey on CAM through the French IBD patient's association website. Patients had to answer a questionnaire (LimeSurvey application) about sociodemography, IBD treatment, CAM type, socioeconomic data, and QOL using the Short IBD Questionnaire (SIBDQ). Patients noted the impact of CAM on their symptoms and on their QOL on a scale of 0-100. CAM users and nonusers were compared by univariate and multivariate analyses. RESULTS: A total of 936 IBD patients responded and 767 (82.4%) filled up the whole questionnaire: 503 reported CAM use and 172 had never used. The types of CAM reported were diet-based (30.7%), body-based (25.1%), homeopathic or traditional medicine (19.6%), naturopathy (15.2%), and mind-body medicine (9.1%). The gastroenterologist was aware of CAM use in only 46% of patients. CAM users were more likely to have ulcerative colitis [odds ratio (OR)=1.78, P=0.018], clinical remission (OR=1.42, P=0.06), high level of education (OR=1.51, P=0.02), poor observance (OR=1.81, P=0.017), or to have terminated conventional treatment (OR=2.03, P=0.003). CAM users tend to have higher rates of SIBDQ scores, greater than 50 (OR=1.57, P=0.06). Improvement in symptoms and QOL was reported with all CAM types except mind medicine. CONCLUSION: CAM use is widespread among IBD patients. CAM users report improvement in symptoms and QOL, but they tend to stop their conventional treatment. Better information about CAM might improve adherence to conventional treatment.

Risk factors of anxiety and depression in inflammatory bowel disease.

BACKGROUND: Little is known in inflammatory bowel disease (IBD) regarding risk factors for psychological distress. The aim of this work was to study the disease characteristics and socioeconomic factors associated with anxiety and depression in IBD. METHODS: From December 2008 to June 2009, 1663 patients with IBD (1450 were members of the Association Francois Aupetit, French association of IBD patients) answered a questionnaire about psychological and socioeconomic factors and adherence to treatment. In this study we focused the analysis on the characteristics of IBD (type, location, severity, treatment) and socioeconomic factors (professional, educational, and marital status and Evaluation of Precarity and Inequalities in Health Examination Centers [EPICES] score of socioeconomic deprivation; score established in medical centers in France; http://www.cetaf.asso.fr) associated with depression and anxiety. Anxiety and depression were assessed by the Hospital Anxiety and Depression Scale. Comparison between groups according to the existence of depression or anxiety was carried out using univariate and multivariate analysis. RESULTS: In all, 181 patients (11%) were depressed; 689 patients (41%) were anxious. By multivariate analysis, factors associated with anxiety were: severe disease (P = 0.04), flares (P = 0.05), nonadherence to treatment (P = 0.03), disabled or unemployed status (P = 0.002), and socioeconomic deprivation (P < 0.0001). Factors associated with depression were: age (P = 0.004), flares (P = 0.03), disabled or unemployed status (P = 0.03), and socioeconomic deprivation (P < 0.0001). CONCLUSIONS: In this large cohort of IBD patients, risk factors for anxiety and depression were severe and active disease and socioeconomic deprivation. Psychological interventions would be useful when these factors are identified.

Socioeconomic and psychological factors associated with nonadherence to treatment in inflammatory bowel disease patients: results of the ISSEO survey.

BACKGROUND: Adherence to treatment is a key condition in preventing relapses in inflammatory bowel disease (IBD). The aims of this study were specifically to study socioeconomic and psychological factors and adherence to treatment in a large cohort of patients. METHODS: A questionnaire concerning demographic, clinical, and psychosocial characteristics was mailed to 6000 IBD patients belonging to the French association of IBD patients (AFA). The questionnaire was also available on the Website of the AFA for nonmember patients to answer. Good adherence to treatment was defined as taking ≥ 80% of prescribed medication. Socioeconomic deprivation was assessed using the specific EPICES score (http://www.cetaf.asso.fr) developed in France. Anxiety and depression were assessed using the Hospital Anxiety and Depression scale. RESULTS: A total of 1069 women and 594 men (43.6 ± 15.4 years) completed the questionnaire; 1450 (87.2%) of them belonged to the AFA. In all, 1044 had Crohn's disease, 36 indeterminate colitis, and 583 ulcerative colitis. Adherence ≥ 80% was reported by 89.6% of patients. Factors associated with good adherence were: older age (P < 0.01), treatment with anti-tumor necrosis factor (TNF) (P < 0.0001), membership in the AFA (P = 0.006). Nonadherence increases with smoking (P = 0.02), constraints related to treatment (P < 10(-9) ), anxiety (P < 10(-6) ), and moodiness (P < 10(-5) ). There were no differences in adherence for the following: gender, type of IBD, activity and severity of the disease, socioeconomic deprivation, marital status, education level, and depression. CONCLUSIONS: In this large cohort of IBD patients, psychological distress and constraints related to treatment decrease adherence to treatment, while membership in a patients' association improves it.