scholarly journals Inflammatory bowel disease advice lines during the COVID-19 pandemic: a retrospective service evaluation

2021 ◽  
pp. 38-49
Author(s):  
Pearl Avery ◽  
Lisa Younge ◽  
Lesley Dibley ◽  
Jonathan Segal

Background: The COVID-19 pandemic significantly impacted on healthcare delivery worldwide, affecting many services, including those for inflammatory bowel disease (IBD). Aims: To evaluate the impact of COVID-19 on worldwide IBD telephone advice-line services. Methods: A mixed-methods 25-item online survey was distributed to IBD specialist nurses globally using IBD professional networks, email and social media. Data were analysed using descriptive statistics (quantitative data) and content and thematic analysis (qualitative data). Findings: Across 21 countries, 182 IBD specialists participated. With adjustments, all advice lines remained functional. Call content changed, and call volume increased exponentially. Strategies were recommended to maintain services. IBD specialist nurses faced considerable challenges, including overwhelming workload, disrupted referral pathways, fragmented IBD clinical team support, isolation and greatly lowered morale. Conclusions: To cope with similar future crises, advice-line training, resilience coaching and ringfencing of the IBD clinical team are essential. Development of global guidelines for maintaining advice-line functionality in any scenario is recommended.

2020 ◽  
Vol 14 (Supplement_3) ◽  
pp. S785-S790
Author(s):  
Iris Dotan ◽  
Remo Panaccione ◽  
Gilaad G Kaplan ◽  
Colm O’Morain ◽  
James O Lindsay ◽  
...  

Abstract Infusion centres are a central part in the management of patients with inflammatory bowel disease [IBD] and could be a source of transmission of SARS-COV-2. Here we aimed to develop global guidance for best practices of infusion centres for IBD patients and to determine the impact of the COVID-19 pandemic on these centres. Under the auspices of the International Organization for the Study of Inflammatory Bowel Disease [IOIBD], a task force [TF] was formed, an online survey was developed to query infusion centre protocols during COVID-19, and recommendations were made, based on TF experience and opinion. Recommendations focus mainly on patients screening, infusion centres re-organization, personnel protection, and protocol modifications such as shortening infusion duration or replacing it with subcutaneous alternatives. Implementing these recommendations will hopefully reduce exposure of both IBD patients and care givers to SARS-COV-2 and improve the function and safety of infusion centres during the COVID-19 pandemic as well as potential future threats.


2020 ◽  
pp. flgastro-2019-101354 ◽  
Author(s):  
Lisa Younge ◽  
Isobel Mason ◽  
Rukshana Kapasi

ObjectiveTo determine the impact to date of the ongoing Crohn’s & Colitis UK inflammatory bowel disease (IBD) clinical nurse specialists (CNS) campaign.MethodsA survey-based design was used. 2 questionnaires were sent to the UK IBD nursing community and promoted via nursing and clinical networks. Respondents were asked to provide data at both an individual and trust level about their nursing services.Results394 IBD CNS posts were identified across the UK, with a 32% increase in posts since the start of the campaign. 27% felt the campaign had been influential in securing new posts. Greater numbers of posts were reported in England when compared with the devolved nations. Most services remain below the UK standards recommendation of 2.5 IBD CNS per 250 000 patient population. Cross site working was reported in 59% of services. 45% of respondents were non-medical prescribers, with 13% educated to MSc level. High levels of stress were reported by IBD CNS associated with managing advice line services.ConclusionsCrohn’s & Colitis UK’s ‘More IBD Nurses–Better Care’ campaign has contributed to the numbers of CNS posts in IBD continuing to rise, but they remain lower than the recommended standard of 2.5 IBD CNS per 250 000. Educational and career pathways are not clearly defined, and aspects of the role such as advice line provision contribute to stress within the workforce. The ongoing aims of the charity campaign hope to address these issues by improving access to formal education pathways with peer support for IBD specialist nurses, and advice line training, in addition to supporting trusts and services throughout the UK to reduce the workforce deficit with effective business cases.


2020 ◽  
Vol 2020 ◽  
pp. 1-6 ◽  
Author(s):  
Firdevs Topal ◽  
Hakan Camyar ◽  
Elif Saritas Yuksel ◽  
Suleyman Gunay ◽  
Fatih Topal ◽  
...  

Background. Beyond the medical treatment in inflammatory bowel disease (IBD), there are other issues which influence the quality of life adversely. The aim of this study was to determine the impact of the IBD patients’ illness on working and education life. Method. The participants were invited to participate in the online survey from the Turkish Crohn’s and Ulcerative Colitis Patient Association network. The data was analysed and then discussed to improve the health-related quality of working and education life. Results. One hundred and fifteen patients had ulcerative colitis (UC) (57.2%), and 86 had Crohn’s disease (CD) (42.8%). There was a statistically significant difference in UC between retirement age group 1 (<40 age) and groups 2 (40-49 ages) and 4 (60-65 ages) (p<0.05). There was the same significant difference in CD. Even though the data did not have significant statistical difference, there was clustering around negative perceptions the patients have about their working and education lives. Conclusion. Our survey revealed a very strong causative relationship between work and IBD involving problems before, during, and at the end of employment. Young patients lower their career expectations, and that announces a clear need to support them and improve career guidance.


2017 ◽  
Vol 25 (4) ◽  
pp. 511-521 ◽  
Author(s):  
Inês A Trindade ◽  
Cláudia Ferreira ◽  
José Pinto-Gouveia

Although patients with inflammatory bowel disease seem to be prone to high levels of shame, the mechanisms behind the impact of chronic illness–related shame on patients’ functioning have not been explored yet. This study aims to address these gaps using a sample of 161 patients with inflammatory bowel disease who completed self-report measures on an online survey. The results from path analyses showed that chronic illness–related shame presented direct and indirect effects on psychological health ( R2 = .66) and social relationships ( R2 = .46). The indirect effects were mediated by experiential avoidance and uncommitted living. Possible explanations to these findings and clinical implications are discussed.


Marine Drugs ◽  
2021 ◽  
Vol 19 (4) ◽  
pp. 196
Author(s):  
Muhammad Bilal ◽  
Leonardo Vieira Nunes ◽  
Marco Thúlio Saviatto Duarte ◽  
Luiz Fernando Romanholo Ferreira ◽  
Renato Nery Soriano ◽  
...  

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.


2021 ◽  
Vol 14 ◽  
pp. 175628482110132
Author(s):  
Karoline Soares Garcia ◽  
Bianca Pocopetz Facas ◽  
Marta Brenner Machado ◽  
Fábio Vieira Teixeira ◽  
Luisa Avedano ◽  
...  

Background: In this analysis we aimed to describe Brazilian inflammatory bowel disease (IBD) patients’ knowledge and perceptions regarding biosimilars and compare with viewpoints from non-Brazilian patients. Methods: An online survey consisting of 19 questions was made available by the European Federation of Crohn’s and Ulcerative Colitis Associations between July 2018 and December 2018. Only respondents who had heard of biosimilars were asked to respond to all of the questions. Results: A total of 102 Brazilian IBD patients responded to the survey. The majority (78.4%) of patients had been exposed to anti-tumor-necrosis-factor drugs and 63.4% of them had heard of biosimilars. Brazilian respondents worried significantly more about biosimilars being less effective than the originator (62.5% versus 47.9%, p value 0.03) and molecular differences between biosimilars and originators (53.1% versus 31.8, p value 0.001) as compared with non-Brazilian IBD patients. The majority of Brazilian (75%) and non-Brazilian (64.1%) respondents thought that the lower cost of biosimilars should not come before their safety and efficacy ( p value 0.09). In addition, 79.1% of Brazilian respondents believed that the arrival of biosimilars will have an impact on the management of IBD. Conclusions: Brazilian patients reported higher rates of misconceptions regarding biosimilars than non-Brazilian IBD patients. Although patients still worry about different aspects regarding biosimilars, they also tend to be confident that biosimilars will have an impact on the management of their disease. With the recent approval of many biosimilars in Brazil and the imminent widespread use of these drugs, our data raise awareness for the need of providing patient education to prevent negative expectations toward switching to biosimilars.


2021 ◽  
Vol 4 (Supplement_1) ◽  
pp. 56-57
Author(s):  
M Painchaud ◽  
S Singh ◽  
R M Penner

Abstract Background Due to the COVID-19 pandemic, clinics were forced to implement telehealth into clinical practice. Inflammatory bowel disease (IBD) patients are a unique population that require long-term care to achieve and maintain deep remission of disease. Thus, they require stable and continuous contact with healthcare providers, often with multiple appointments. We examined an IBD predominant practice, also providing care for general gastrointestinal (GI) conditions in Kelowna, British Columbia. As telehealth has the potential to become a standard of care for clinics, patient satisfaction must be considered. We hypothesize that with the efficacy and ease of remote appointments, there will be an increase in patient satisfaction, quality of care, and quality of communication. Aims We aim to compare the level of patient satisfaction between in-person appointments pre-pandemic, and current remote appointment telehealth practices. Methods An online survey was sent to the 608 patients who had participated in one or more remote appointment between March 15-June 15, 2020. The survey compared the level of patient satisfaction, quality of care, and quality of communication between patient and doctor before and during the pandemic. It was also determined if patients would elect to continue with remote appointments in the future due to ease of use, and time/financial resources saved. Results Of the 273 participants, 80% were IBD patients while 20% were treated for other GI conditions. A total of 78% reported that they would elect to continue with remote appointments as their primary point of care with their doctor. The remaining 22% reported that they prefer in-person visits due to the necessity of a physical exam, yet specified that communication by these remote means was still of good quality. Levels of patient satisfaction before and during the pandemic remained consistent, where 59% of patients assigned a satisfaction rating of 10 (highest) to their pre-pandemic in-person appointments, and 54% of patients assigned a rating of 10 to their remote appointments during the pandemic. Similar consistent results were found for quality of care and quality of communication. A total of 70% of patients reported that if this service had not been available, they would have sought out other forms of care; 18% of the total responses considering emergency care. Conclusions IBD patients at Kelowna Gastroenterology perceived similar levels of satisfaction, quality of care, and quality of communication with both in-person and telehealth appointments. This suggests that telehealth practices may be a cost-effective, sustainable appointment style that provides comparable quality to in-person appointments. Funding Agencies None


2020 ◽  
Vol 4 (1) ◽  
pp. e000786
Author(s):  
Abbie Maclean ◽  
James J Ashton ◽  
Vikki Garrick ◽  
R Mark Beattie ◽  
Richard Hansen

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.


2018 ◽  
Vol 2 (Supplement_1) ◽  
pp. S68-S72 ◽  
Author(s):  
Geoffrey C Nguyen ◽  
Laura E Targownik ◽  
Harminder Singh ◽  
Eric I Benchimol ◽  
Alain Bitton ◽  
...  

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