bluuebunny/crossref_metadata_2025_split huggingface dataset:
N03 Introducing video consultations as part of an IBD tight monitoring care pathway: interim results of the INTERACTION project
Authors: Hoefkens E , Lembrechts N , Bossuyt P , Pouillon L 
Published: January 2023

Abstract

Background
IBD requires tight monitoring of disease activity. E-health applications are associated with improved clinical outcomes and have a positive impact on healthcare costs. INTERACTION (telemedIciNe as parT of an intEgRAted IBD Care paThway @Imelda bONheiden) is a pilot project exploring the feasibility of implementation of teleconsultation in an existing tight monitoring care pathway and potential (dis)advantages for patients, health-care workers and quality-of-care.

Methods
INTERACTION is an ongoing, single-centre feasibility project including patients with moderate-to-severe IBD (UC/CD) treated with immunomodulators, subcutaneous biotherapy or oral small molecules since February 2022. Eligibility criteria include (i) stable treatment and remission, based on physician global assessment, patient-reported outcomes (UC: SCCAI&lt;3; CD: PRO-2 ≤11), and faecal calprotectin (&lt;250 µg/g) or endoscopy (UC: MES ≤1; CD: SES-CD ≤5), and (ii) digital access.. Participants agreed to embark in an adapted care pathway implementing video consultations with the treating physician alternating with in-person consultations. PRO’s and biomarkers were collected on dedicated time points (Figure 1). Patients’ expectations were questioned at the start of the pathway. Outcomes included patients’ experiences (assessed with the adapted Telehealth Usability Questionnaire), socio-economic impact, and clinical evolution (IBD-related flares or hospitalizations).

Results
At the moment of interim analysis (Oct 24th 2022), 37/44 (84%) invited patients wanted to participate. The majority expected that teleconsultations could be equal to in-person consultations (86%) and lead to an increased access to healthcare (92%) and time gain (97%). Seven patients refused participation for various reasons (Table 1). Four patients were screen failures due to lack of remission. Ultimately, 33 patients (baseline characteristics: Table 2) underwent a total of 67 consultations. The majority (92%) experienced the video consultations as (strongly) satisfactory (Figure 2). Patients’ time savings with video consultation compared to an in-person consultation varied between 0-30’ (16%); 30-60’ (36%), 60-120’ (36%) and more than 120’ (12%). The majority (92%) avoided a round trip to the hospital of at least 10 km. Forty percent averted absenteeism. One patient experienced an IBD flare without the need for hospitalisation during the median follow-up of 3 (IQR 3-5.5) months .

Conclusion
Implementing video consultations in the IBD care pathway of the ongoing INTERACTION project seems feasible, well-received and safe in patients with IBD in stable remission. In a second phase, video consultations led by an advanced IBD-nurse warrant further exploration.
N05 Highlighting the critical contributions of Inflammatory Bowel Disease nurses in Canada: Perspectives from nurses, gastroenterologists, individuals living with IBD, and caregivers.
Authors: Rohatinsky N , Zelinsky S , Chauhan U , Currie B , Frost K , Kroeker K , Ma C , Murray K 
Published: January 2023

Abstract

Background
Multidisciplinary teams are essential in managing Inflammatory Bowel Disease (IBD). IBD nurses play a critical role in improving patient outcomes and providing cost-effective quality of care. In Canada, access to IBD nurses remain inconsistent. There are more than 270,000 people living with IBD in Canada and fewer than 90 IBD nurses to care for them. This study was conducted to capture the value of IBD nurses, to identify gaps in resources, and to generate strategies for building IBD nurse capacity and enhancing the contributions of IBD nurses in Canada.

Methods
A convergent mixed-methods design was utilized to gather input from 4 stakeholder groups: IBD nurses, gastroenterologists, individuals living with IBD, and caregivers. Data collection was done through completing a review of the literature, stakeholder surveys, and one-on-one online semi-structured interviews with all stakeholders. Descriptive statistics were used for the quantitative analysis. Semi-structured interviews were audio recorded and transcribed verbatim then thematically analyzed.

Results
The IBD nurse’s role in clinical care was recognized as a value-add across all stakeholder groups. Having access to a specialized IBD nurse was recognized as a service that elevates the quality and continuity of patient care. As the interface between patients and other healthcare providers, there was recognition amongst stakeholders that IBD nurses are ideally positioned to educate patients about IBD management, general health promotion in the context of chronic disease and may support other aspects of care such as psychosocial, nutrition, and other extraintestinal manifestations or to help guide patients toward appropriate care channels. Many IBD nurses view advocacy as a logical extension of their official responsibilities, helping IBD patients to make treatment decisions and assisting them with disease challenges that affect their quality of life.

Conclusion
IBD nurses represent an underused resource in Canadian IBD care. Canada currently falls short of the recommended 2.5 full-time IBD nurse equivalents per 250,000 population. Achieving this objective will require a commitment to train IBD nurses and additional funding for their education and employment. The government can work with nursing institutions to set benchmarks, establish training programs, and create opportunities for IBD nurses in Canada. Introducing more IBD nurses into the system and using them to their full capacity makes sense from both a clinical and economic standpoint. It lifts the burden on gastroenterologists and primary care physicians, reduces costs to health systems while improving the overall quality of care for IBD patients.
N08 The emerging role of the IBD Care Manager: preliminary results from a survey by Italian IBD nurses
Authors: Napolitano D , Schiavoni E , Laterza L , Mora V , Sofo L , Pugliese D , Gasbarrini A , Scaldaferri F 
Published: January 2023

Abstract

Background
A multidisciplinary team (MT) approach has increasingly taken a prominent role in the management of IBD patients, providing a complete level of assistance. A key figure is represented by the IBD care Managers (ICM), who is usually an independent practice nurse, responsible for evidence-based assessment, care planning, treatment evaluation and the provision of practical information, health education and emotional support to patients. The ICM coordinate also each figure of the MT and help patients to accede to community resources and social services. The aim of the study is to investigate what are the skills required for ICMs, according to the nurses’ judgement.

Methods
A questionnaire was created by a team of experienced nurses on the basis of the Second N-Ecco declaration of consent and administered to nurses who have worked in an IBD unit for a period of at least three years. A definition of the ICM was provided to any participant. The questionnaire consisted of 3 sections: behavioural, knowledge and managerial skills than an ICM (score with Likert scale 0-4). The questions of the created sections were studied in relation to the benefits for the patient, the organizational advantages, the clinical advantages and the Italian state of the art.

Results

55 nurses partecipated to the study from 16 Italian centers. In the evaluation of behavioural skills (Fig. 1) of the ICM, "Management and support of the pregnant patient" (0.7), is the lowest scored item, while "patient privacy" obtained higher scores (3.2). In the evaluation of knowledge (Fig. 2) of the ICM, the "Knowledge of intimacy and sexuality" obtained the lowest score (0.7), while knowledge of pshyco-phisical and social impact of the disease obtained an higher score (1.8). In managerial skills (Fig. 3) the "Management of the pain" (0,8) obtained a lowest score compared to "Management of biological therapies" (2.6).

Conclusion
This is the first national survey exploring the role and the required skills of ICMs The awareness of ICM, their role and the measure of their performances, is the first step to foster the development of this figure in the health system. Further studies are mandatory to assess clinical and organizational outcomes.
N10 Facilitators and inhibitors to first adult care visits in the transition from paediatric to adult orientated Inflammatory Bowel Disease healthcare
Authors: Rea J , Greaney A M , Farrell D 
Published: January 2023

Abstract

Background
Inflammatory bowel disease (IBD) can be a very debilitating disease and it is found to be more extensive in children with rapid early progression. The successful transition of patients from paediatric to adult-oriented services is essential to prevent disruption in care and negative effects on long-term health outcomes. In particular, the attendance at the first adult care visits are a pivotal phase of a successful transition process to ensure continuity and retention in care. The aim of this study is to explore the inhibitors and facilitators to first adult care visits in the transition process from paediatric to adult oriented IBD healthcare.

Methods
An exploratory, descriptive, qualitative approach was employed, underpinned by a transition theory (Meleis, 2010). A purposive sample of seven participants (over 16 years of age) diagnosed with IBD, who transitioned in the last four years, were recruited, through two clinical sites in Ireland, and an IBD support organisation. Online semi-structured interviews were conducted via Microsoft Teams and data were analysed using content analysis.

Results
Three main themes were identified including the ‘perception of transition’, ‘knowledge and preparation’ and ‘being an adolescent with IBD’. The themes illuminate various inhibitors and facilitators to the first adult care visits. The theme perception of transition revealed that joint care visits and adult healthcare teams that actively engage with adolescents during the first adult care visits were facilitators, whereas difficulties contacting the adult services, lack of effective follow up and the change in language were inhibitors. More than one joint visit with the adult and paediatric healthcare teams and active promotion of independence facilitated knowledge and preparation for the first adult care visits. In contrast, a limited focus on disease management education and significant parental involvement inhibited the development of knowledge and preparation for the first adult care visits. Addressing adolescent specific topics, such as sexual health, and the availability of IBD supports, such as an IBD psychologist, social media platforms and meeting peers with IBD, supported being an adolescent with IBD and facilitated the first adult care visits.

Conclusion
Multiple, organised joint care visits with an active focus on promoting independence and providing education on disease management and adolescent specific topics, using age appropriate language, facilitates first adult care visits. Identifying the inhibitors and facilitators provide insights for healthcare professionals in supporting a successful transition process and highlights the need for transition policies and structured transition programmes.
N19 Fear of not being accepted: a synthesis of qualitative experiences of children and adolescents living with IBD
Authors: Craddock S , Fourie S 
Published: January 2023

Abstract

Background
There is an increasing number of paediatric and adolescent patients being diagnosed with Inflammatory Bowel Disease (IBD) 1. Being diagnosed at an early age can have a detrimental effect on a child’s development, so the need for support is vital. Adult experiences of living with IBD are known 2 , but very little is known about paediatric experiences. This literature review aimed to identify the paediatric and adolescent experiences of living with IBD and explore how IBD impacts their life.

Methods
A search was performed on following databases: Medline, CINAHL, and British Nursing Index. The inclusion criteria were: IBD, age under 18 years old, English language, primary qualitative research, and a publication date between 2016-2021. Out of the 43 papers identified, only three were selected as they met the inclusion/exclusion criteria. A qualitative synthesis of evidence was conducted, and the data was reinterpreted 3.

Results
Among the three papers, there was a dominant theme about the ‘Fear of not being accepted'. This overarching theme revolved around peer acceptance, and included two main themes: ‘Fear of disclosure' and 'How do I fit in?', as patients did not want to disclose their condition and expressed their desire to be viewed as normal. Throughout their experiences, children and adolescents expressed embarrassment as the primary feeling since living with IBD. Having IBD as a child or adolescent could adversely affect their psycho-social development, especially during their sexual development, affecting their romantic relationships and interactions with other people. The fear of not being accepted led participants to feel unattractive and apprehensive when forming new relationships.

Conclusion
It is imperative for children and adolescents to feel accepted, to feel comfortable disclosing their illness, and to feel equal to their peers. Children and adolescents face a variety of psycho- socio- emotional challenges living with IBD. Due to the limited number of studies that have explored the challenges that paediatrics and adolescents encounter, the need for more evidence is crucial. More evidence on children experiences of living with IBD would help healthcare professionals understand the impact of illness, and develop strategies to support children and adolescents living with IBD to minimise the fear of social stigma and rejection.
1. Kaplan GG. The global burden of IBD: from 2015 to 2025. Nat Rev Gastroenterol Hepatol. 2015;12(12).
2. Fourie S, Jackson D, Aveyard H. Living with Inflammatory Bowel Disease: A review of qualitative research studies. Int J Nurs Stud. 2018;87:149-156.
3. Thomas J ;Harden A. Methods for the Thematic Synthesis of Qualitativeresearch in Sistematic Reviews.; 2007.
N20 The added shame of IBD: experiences of people from various ethnic backgrounds discussing sexual wellbeing in clinical settings
Authors: Fourie S , Czuber-Dochan W , Norton C 
Published: January 2023

Abstract

Background
Inflammatory bowel disease (IBD) causes significant difficulties in peoples’ lives, and negatively affects their sexual wellbeing (SWB). Evidence from diverse population is paramount when we seek equality, diversity and inclusion in healthcare.1 The evidence on patient SWB experience in the context of IBD comes from predominantly white participants.2 This study explored experiences from people with a diverse ethnic background, and cultural and religious influences on discussing SWB in a clinical setting.

Methods
Qualitative study. Data were collected via interviews and anonymous surveys and analysed using thematic analysis.3

Results
A total of 26 participants from across the world responded (M/F=10/16). Demographic data revealed that 42.3% were South Asian, 23% mixed race and 34.7 % had other backgrounds. Of the 26 participants, 61.5% were single, 35% had no religious beliefs, 30% were Hindu and 30% Muslim. Concerns related to sexual wellbeing were reported by 96% of participants, and all wanted the topic to be included in their routine care. The overarching theme was identified as The added shame, which referred to the stigma of ill health in their own culture. Two sub themes were Choosing to be single, as many avoided relationships due to cultural beliefs related to favouring those in good health and Feeling less alone. The second theme represented the 34% who reported discussing the topic with their clinical team and being the ones who initiated the conversation. They would have felt less alone if they had more information and understanding from their community and care providers. Some felt afraid of being judged due to the close-knit community which many of their clinicians were also part of, as they perceived being seen as promiscuous if they raised their concerns. Religion was not found to be a major barrier to discussions about SWB. A few mentioned that being single may be a reason why their clinicians did not initiate the conversation about SWB, as sex outside marriage is considered culturally and religiously unacceptable.

Conclusion
: Experiences of SWB of participants from various ethnic backgrounds did not differ greatly from those of the general IBD population,2 although added pressures were found rooted in cultural upbringing. A heightened sense of privacy and secrecy prevailed, possibly explaining the percentage of participants that reported to be single. Encouraging patient advocates from various ethnic backgrounds to raise awareness of the condition in their communities could help make improved communication possible.
N25 Diagnostic delay and economic burden in ibd: a multicenter italian experience in patients treated with biologics
Authors: Mocci G , Onidi F M , Magri' S , Bodini G , Lorenzetti R , Binaghi L , Dore M F , Martello S , Usai Satta P , Elisei W , Tursi A 
Published: January 2023

Abstract

Background
Inflammatory bowel diseases (IBDs), Crohn's disease (CD) and ulcerative colitis (UC), are chronic and immune-mediated diseases with a relapsing-remitting trend. The overall incidence of these diseases is increasing. However, it is estimated that more than one third of patients experienced symptoms for more than one year before diagnosis. Delay in IBD diagnosis has several clinical, therapeutic and economic implications. Early diagnosis and proper treatment are the cornerstones for improving the standard of care for these patients. This study aims to evaluate the diagnostic delay (DD) in patients with IBD and to analyze the clinical burden of the delay in IBD diagnosis in patients treated with biological drugs.

Methods
An observational and retrospective study was performed in IBD patients, regularly followed in four IBD Units. Data regarding delay in IBD diagnosis were assessed through a questionnaire evaluating the disease course. Moreover, data about biologics dispensation were obtained from the medical records in the period 2020-2022

Results
135 IBD patients were enrolled (UC 72, CD 63, M 80, F 55). Median age at diagnosis was 32 years (IQR 22-45); 7% of patients were ≤ 16 years old at diagnosis. Median age on erollement was 47 ( IQR 4-59) Median DD was 12 months (IQR: 6-24). No significant difference was found in median DD between UC [12 months (IQR: 4.5-12.0)] and CD patients [12 months (IQR: 12-48)]. However, the proportion of patients with a DD &gt;24 months was significantly (p=0.007) higher in CD (21/63 = 33%) than in UC patients (10/72=13%). After a median disease duration of 10 years (IQR: 4-17), overall, 67 patients (49.7%) were exposed to one biologic agent, 43 patients (31.8%) were exposed to two biologic agents, 25 (18.5%) to three or more biologic agents. 23% of patients (31/135) underwent surgery. The statistical analysis showed that DD &gt;24 months was not statistically significant associated with history of ≥ 2 biological drugs (p=0.51). Conversely, there was association with surgical treatment (p=0.004).

Conclusion
The diagnostic delay in IBD represents a challenge with clinical and, therapeutic impact. It’s crucial to cooperate with general practitioner and gastroenterologists not dedicated to IBD in order to reduce the diagnostic delay and guarantee an effective, appropriate and early treatment that will improve the patients’ quality of life and meanwhile reduce the health care system costs.
N26 Help-seeking experiences of patients with Inflammatory Bowel Disease from healthcare professionals: A qualitative descriptive study
Authors: Byron C , Lehane E , Burton A , Cornally N 
Published: January 2023

Abstract

Background
Due to the chronic, relapsing and remitting disease course associated with Inflammatory Bowel Disease (IBD), self-management tools inclusive of conceptualising the problem, acknowledging the need for external help and knowing where to seek help from are essential for the management of IBD. Those living with IBD are challenged by physical symptoms and psychological and social issues that they are unable to self-solve. Help-seeking behaviour (HSB) is a relatively new concept to health services research (Cornally & McCarthy, 2011) and has been infrequently applied to the area of IBD. When IBD-related challenges are beyond self-resolution, patients require help and support from healthcare professionals (HCPs). This engagement must be facilitated at the point of issue recognition, as opposed to at crisis point. Given the dearth of research in this area, this study explored the help-seeking experiences of patients living with IBD for the challenges associated with IBD from HCPs, to enable us through understanding their experiences, how best to support help-seeking pathways and/or early interventions to assist those living with IBD to resolve issues that challenge their day-to-day lives.

Methods
A qualitative descriptive design (Sandelowski 2000; Neegaard et al., 2009; Sandelowski 2010) was employed as little is known regarding the help-seeking experiences of those living with IBD, their sources of help and preferred methods of seeking help. Participants were recruited purposefully from two public university hospitals in the Republic of Ireland that provide dedicated in- and out-patient care to those living with IBD. Data were collected via semi-structured one-to-one phone interviews (n=8).

Results
An overarching theme of ‘coming to terms with managing my IBD’ and four themes of ‘help-seeking trigger’, ‘help-seeking hesitancy’, ‘help-seeking decision pathway’ and ‘need for support’ emerged from the data by way of latent pattern content analysis.

Conclusion
Typically, help is sought for IBD related challenges by contacting their designated IBD nurse directly via text, the preferred method, or via phone. The majority of participants spoke of negative experiences of seeking help prior to the introduction of an IBD nurse. These may be categorised either by lack of service provision or by symptoms being dismissed or not understood by HCPs who lack expertise in the area of IBD. Triggers for seeking help are in line with the challenges identified in our earlier meta-synthesis of patients’ experiences of IBD (Byron et al. 2020) and tend to mainly be related to the physical symptoms associated with IBD as well as the medical treatments being delivered. The need for both formal and informal psychological support was identified by participants.