Inflammatory bowel disease negatively impacts household and family life

BackgroundInflammatory bowel disease (IBD) has a major impact on different aspects of life of patients with IBD, but functioning in the home environment is under-reported in literature. The aim of this study was to assess the impact of IBD on household and/or family life.MethodAdult patients with IBD from the outpatient clinic of the Erasmus MC (Rotterdam, the Netherlands) were invited to participate in this cross-sectional study between September and December 2020. A questionnaire was composed to measure the impact of IBD on functioning in the household and family life. In addition, the IBD Disability Index and Work Productivity and Activity Impairment Questionnaire were used. Data were analysed using descriptive statistics and multiple logistic regression modelling.ResultsOf 308 invited patients, 229 patients were included (response rate 74%). Sixty-eight per cent of patients were diagnosed with Crohn’s disease, 69% were female and median age was 38.0 years. Many patients reported difficulties with domestic activities (55.0%), leisure (53.9%), parenting (50.6%), sexual activities (48.4%) and interpersonal relationships (39.1%). Fatigue was associated with the experience of more severe difficulties in domestic activities (OR 16.160, 95% CI 6.053 to 43.141). Furthermore, 32.7% of patients felt that IBD influenced their desire to have children.ConclusionIBD has a markedly negative impact on household and/or family life in many patients. To optimise patient care, household and family related difficulties need to be considered in a holistic treatment approach.

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P213 Having Inflammatory Bowel Disease Negatively Impacts Household and Family Life

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.339 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S271-S271

Author(s):

E Paulides ◽

D Cornelissen ◽

C J van der Woude

Keyword(s):

Inflammatory Bowel Disease ◽

Family Planning ◽

Family Life ◽

Bowel Disease ◽

Negative Impact ◽

Medical Center ◽

Holistic Treatment ◽

Desire To Have Children ◽

Inflammatory Bowel ◽

The Impact

Abstract Background Inflammatory bowel disease (IBD) can have a major impact on different aspects of life. This study aimed to provide insight into the impact of IBD on household and/or family life, and to determine whether this differed between sex. Methods Between September and December 2020, adult IBD patients from the outpatient clinic of the Erasmus Medical Center (Rotterdam, the Netherlands) were invited to fill out a survey. A questionnaire was developed to measure the impact of IBD on functioning in the household and on family planning. Generic disability and work disability were measured with the IBD Disability Index (IBD-DI) and the Work Productivity and Activity Impairment Questionnaire (WPAI-IBD). Data were analysed using descriptive statistics and tests for independent groups. Results Of the 229 patients who participated (response rate 74%), 68% had Crohn’s disease, 69% was female and the median age was 38.0 years. Many patients experienced difficulties with domestic activities (55.0%), leisure (53.9%), parenting (50.6%), sexual activities (48.4%) and interpersonal relationships (39.1%) because of IBD in the past week. Furthermore, 32.7% of patients felt that IBD interfered with their desire to have children. Female sex was associated with more severe limitations in various aspects of household life, more interference in family planning and higher generic disability scores. Conclusion IBD had a markedly negative impact on household and/or family life in many patients. In order to optimize patient care, physicians need to be aware of household and family related difficulties and strive for a holistic treatment approach.

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N07 A qualitative study of the impact of inflammatory bowel disease on partners

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab074.821 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S611-S612

Author(s):

P Thapwong ◽

C Norton ◽

H Terry ◽

W Czuber-Dochan

Keyword(s):

Inflammatory Bowel Disease ◽

Everyday Life ◽

Bowel Disease ◽

Social Life ◽

Negative Impact ◽

Family Members ◽

Well Being ◽

Health And Social Care ◽

Inflammatory Bowel ◽

The Impact

Abstract Background Inflammatory Bowel Disease (IBD) not only impacts the quality of life of the patient, but also affects their family members. Studies to date have provided an understanding of impact of IBD and IBD implications for people with IBD. However, little is known about the impact of IBD on their family members. Therefore, the current study aimed to explore the lived experience of people with IBD and their family members regarding the impacts of IBD on family members and their coping methods. Methods Twelve participants, including six people with IBD with their six partners, were purposively selected, no other family members (parents / children, sibling) came forward to participate in the study. The in-depth, semi-structured online interviews were conducted via Skype, Zoom, or Microsoft Teams between February-June 2020. Interviews were audio-recorded, transcribed verbatim, and analysed using inductive thematic analysis by Braun and Clarke. Results Four main themes emerged during the analysis under the central theme “our relationship with IBD, for better or worse”. IBD affected the partners in terms of their own relationship, relationship with others, everyday life, and emotional and mental well-being. The theme “our relationship” showed the impact of IBD on the relationship between a couple, including the intimate relationship, family planning, role change as partner and carer, and the importance of honest communication. IBD also affected wider relationships with family, children, and social life, but teamwork could mediate negative impact in relationships. Emotional well-being was impacted by living in constant fear and guilt. Humour and knowledge of IBD reduced negative impacts. IBD impacts on everyday life (diet, finances, and travel) for both patients and partners. Planning for uncertain situations was helpful to reduce restrictions. Conclusion The study provides an understanding of IBD impact on partners and the coping strategies from patients and partners’ perspectives. There are wide-ranging implications for health and social care professionals caring for people with IBD and their families. Social support has been recognised as a vital buffering mechanism in facilitating an individual’s adjustment to IBD. Healthcare professionals and researchers may integrate a bio-psycho-social approach into their work with IBD family members. There is a need to develop interventions to help family members of IBD patients to better cope with the illness and to have a more fulfilling life.

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P114 Frequent work productivity and activity impairment in caregivers of children with inflammatory bowel disease: a project of the prospective PIBD-SETQuality inception cohort study

Journal of Crohn s and Colitis ◽

10.1093/ecco-jcc/jjab076.241 ◽

2021 ◽

Vol 15 (Supplement_1) ◽

pp. S206-S207

Author(s):

R Klomberg ◽

P Kemos ◽

M Aardoom ◽

D Rizopoulos ◽

N Croft ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Disease Activity ◽

Bowel Disease ◽

Productivity Loss ◽

Work Productivity ◽

Daily Activities ◽

Inception Cohort ◽

Activity Impairment ◽

Inflammatory Bowel ◽

The Impact

Abstract Background Paediatric inflammatory bowel disease (IBD) can disrupt daily lives of patients and their caregivers, who may be impaired in performing work or daily activities due to increased caretaking responsibilities, accompanying to frequent hospital visits and increased school absence of their children. However, literature on these impairments is sparse. The aims of this study were to longitudinally quantify this work and activity impairment and evaluate associated factors. Second, to assess the impact of these impairments on caregiver’s health-related quality of life (HRQoL). Methods Since January 2017, children with newly diagnosed IBD are included for the international prospective PIBD-SETQuality inception cohort study1. Patient and disease characteristics are collected at time of diagnosis, at three and twelve months. The impact of the child’s IBD on caregiver’s socioeconomic functioning and HRQoL (rate 1–10) is longitudinally evaluated by the Work Productivity and Activity Impairment (WPAI) and EQ-5D-5L questionnaire. Primary outcomes, including absenteeism (percentage work time missed), presenteeism (percentage impairment while working), work productivity loss (percentage overall work impairment) and activity impairment (percentage affected daily activities, such as householding or exercise), were evaluated using generalized estimating equations models. Results Up to February 2021, 436 children (247 Crohn’s disease (CD); 169 ulcerative colitis (UC)/IBD-unclassified (IBDU)) were eligible for analysis of the WPAI questionnaire. Mean employment rate at diagnosis was 81.0% (74.8% CD, 86.0% UC/IBD-U, p=0.050). At diagnosis, mean absenteeism, presenteeism, work productivity loss and activity impairment were 28.0%, 31.4%, 46.4% and 36.5% respectively (Figure 1A-D). Work productivity loss and activity impairment significantly decreased over time and were associated with disease activity, but not with IBD diagnosis or age at diagnosis (Figure 2A-B). Work productivity loss, but not activity impairment was negatively associated with HRQoL (β -0.067, p<0.01; β -0.027, p=0.387 respectively). Estimated costs related to absenteeism associated with the child’s disease were €8711 per patient during the first year after diagnosis. Conclusion Parents of children with IBD experience significant impairments in their work and daily activities. The impact is biggest at diagnosis, plateaus thereafter and is associated with disease activity. Work productivity impairment results in indirect costs and reduced HRQoL. Reference Figure 1 Figure 2

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The impact of inflammatory bowel disease on hard teeth tissues – preliminary results from POLIBD study

10.26226/morressier.59a6b34bd462b80290b5599d ◽

2017 ◽

Author(s):

Rafa Filip

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Preliminary Results ◽

Inflammatory Bowel ◽

The Impact

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Exploitation of Marine-Derived Robust Biological Molecules to Manage Inflammatory Bowel Disease

Marine Drugs ◽

10.3390/md19040196 ◽

2021 ◽

Vol 19 (4) ◽

pp. 196

Author(s):

Muhammad Bilal ◽

Leonardo Vieira Nunes ◽

Marco Thúlio Saviatto Duarte ◽

Luiz Fernando Romanholo Ferreira ◽

Renato Nery Soriano ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Bioactive Compounds ◽

Bowel Disease ◽

Clinical Translation ◽

Biologically Active ◽

Naturally Occurring ◽

Inflammatory Bowel ◽

Functional Features ◽

Biological Entities ◽

The Impact

Naturally occurring biological entities with extractable and tunable structural and functional characteristics, along with therapeutic attributes, are of supreme interest for strengthening the twenty-first-century biomedical settings. Irrespective of ongoing technological and clinical advancement, traditional medicinal practices to address and manage inflammatory bowel disease (IBD) are inefficient and the effect of the administered therapeutic cues is limited. The reasonable immune response or invasion should also be circumvented for successful clinical translation of engineered cues as highly efficient and robust bioactive entities. In this context, research is underway worldwide, and researchers have redirected or regained their interests in valorizing the naturally occurring biological entities/resources, for example, algal biome so-called “treasure of untouched or underexploited sources”. Algal biome from the marine environment is an immense source of excellence that has also been demonstrated as a source of bioactive compounds with unique chemical, structural, and functional features. Moreover, the molecular modeling and synthesis of new drugs based on marine-derived therapeutic and biological cues can show greater efficacy and specificity for the therapeutics. Herein, an effort has been made to cover the existing literature gap on the exploitation of naturally occurring biological entities/resources to address and efficiently manage IBD. Following a brief background study, a focus was given to design characteristics, performance evaluation of engineered cues, and point-of-care IBD therapeutics of diverse bioactive compounds from the algal biome. Noteworthy potentialities of marine-derived biologically active compounds have also been spotlighted to underlying the impact role of bio-active elements with the related pathways. The current review is also focused on the applied standpoint and clinical translation of marine-derived bioactive compounds. Furthermore, a detailed overview of clinical applications and future perspectives are also given in this review.

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Impact of COVID-19 on the diagnosis, assessment and management of children with inflammatory bowel disease in the UK: implications for practice

BMJ Paediatrics Open ◽

10.1136/bmjpo-2020-000786 ◽

2020 ◽

Vol 4 (1) ◽

pp. e000786

Author(s):

Abbie Maclean ◽

James J Ashton ◽

Vikki Garrick ◽

R Mark Beattie ◽

Richard Hansen

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Delayed Diagnosis ◽

High Standard ◽

Current Evidence ◽

Faecal Calprotectin ◽

Paediatric Patients ◽

Inflammatory Bowel ◽

Working Practices ◽

The Impact

The assessment and management of patients with known, or suspected, paediatric inflammatory bowel disease (PIBD) has been hugely impacted by the COVID-19 pandemic. Although current evidence of the impact of COVID-19 infection in children with PIBD has provided a degree of reassurance, there continues to be the potential for significant secondary harm caused by the changes to normal working practices and reorganisation of services.Disruption to the normal running of diagnostic and assessment procedures, such as endoscopy, has resulted in the potential for secondary harm to patients including delayed diagnosis and delay in treatment. Difficult management decisions have been made in order to minimise COVID-19 risk for this patient group while avoiding harm. Initiating and continuing immunosuppressive and biological therapies in the absence of normal surveillance and diagnostic procedures have posed many challenges.Despite this, changes to working practices, including virtual clinic appointments, home faecal calprotectin testing kits and continued intensive support from clinical nurse specialists and other members of the multidisciplinary team, have resulted in patients still receiving a high standard of care, with those who require face-to-face intervention being highlighted.These changes have the potential to revolutionise the way in which patients receive routine care in the future, with the inclusion of telemedicine increasingly attractive for stable patients. There is also the need to use lessons learnt from this pandemic to plan for a possible second wave, or future pandemics as well as implementing some permanent changes to normal working practices.In this review, we describe the diagnosis, management and direct impact of COVID-19 in paediatric patients with IBD. We summarise the guidance and describe the implemented changes, evolving evidence and the implications of this virus on paediatric patients with IBD and working practices.

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The Impact of Inflammatory Bowel Disease in Canada 2018: IBD in Seniors

Journal of the Canadian Association of Gastroenterology ◽

10.1093/jcag/gwy051 ◽

2018 ◽

Vol 2 (Supplement_1) ◽

pp. S68-S72 ◽

Cited By ~ 5

Author(s):

Geoffrey C Nguyen ◽

Laura E Targownik ◽

Harminder Singh ◽

Eric I Benchimol ◽

Alain Bitton ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Bowel Disease ◽

Inflammatory Bowel ◽

The Impact

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Inflammatory bowel disease has a negative impact on patients reproductive behaviour: the first multicentre survey in the Czech Republic

Gastroenterologie a hepatologie ◽

10.48095/ccgh202112 ◽

2021 ◽

Vol 75 (1) ◽

pp. 12-19

Author(s):

Dana Ďuricová ◽

Zuzana Krátka ◽

Martin Bortlík ◽

Lenka Slabá ◽

Kristýna Strnadová ◽

...

Keyword(s):

Inflammatory Bowel Disease ◽

Czech Republic ◽

General Population ◽

Bowel Disease ◽

Negative Impact ◽

Fertility Rate ◽

Sexual Life ◽

The Czech Republic ◽

Live Births ◽

Inflammatory Bowel

Background: Several previous studies reported the negative impact of inflammatory bowel disease (IBD) on reproductive plans and fertility rate. The aim of our study was to investigate, for the first time, reproductive attitudes and fertility rate among Czech patients with IBD. Methods: Between March and August 2019, consecutive patients with IBD from 22 centres across the Czech Republic responded anonymously to a predefined questionnaire focused on the patients’ demographics, details of IBD and treatment, gynaecological/urological history, reproductive issues and patients’ knowledge on this topic. Results: The questionnaire was filled in by 798 patients (526 women; median age 34 years, 66% with Crohn’s disease). Of these, 58% of the females and 47.1% of the males already had ≥ 1 child (median 2 children). Women with IBD were significantly more worried about infertility (55.5% versus 22.4%), had more limitations in their sexual life (53.2% vs. 26.8%) and more frequently changed their earlier reproductive plans (27.6% versus 11.0%) than the males (p < 0.0001). The total fertility rate in female IBD patients was lower compared to the general population with 1.004 live births/IBD woman versus 1.69 live births/woman in the Czech population. The pattern of decreased fertility was observed in all age-specific categories. Of the childless patients, 14% of the women and 18.1% of the men were voluntarily childless. Approximately one-half of them indicated their IBD to be the primary cause. Conclusions: IBD seems to have a negative impact on patients’ reproductive plans and attitudes. The fertility rate in Czech IBD female patients was decreased compared to the general population in this study.

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