N-ECCO Consensus statements on the European nursing roles in caring for patients with Crohn's disease or ulcerative colitis

O’Connor, Marian; Bager, Palle; Duncan, Julie; Gaarenstroom, J. H.; Younge, Lisa; Détré, Patricia; Bredin, Francesca; Dibley, Lesley; Dignaß, Axel; Barrero, Marta Gallego; Greveson, Kay; Hamzawi, M.; Ipenburg, Nienke; Keegan, Denise; Martinato, Matteo; Gonzalo, F. Murciano; Donnay, Susana Pinó; Price, T; Morros, A. Ramírez; Verwey, Marthe H.; White, Lydia; Woude, C.J. van de

doi:10.1016/j.crohns.2013.06.004

Cited by 116 publications

(79 citation statements)

References 152 publications

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“…The tasks were categorized from A to J (10 tasks), respectively, from A to M (13 tasks). The description of the tasks can be found elsewhere [11]. Each item was scored in view of relevance and current practice with (1 = relevant statement, respectively, currently followed statement; 0.5 = partially relevant statement, respectively, currently partially followed statement; 0 = not relevant statement, respectively, not currently followed statement).…”

Section: Methodsmentioning

confidence: 99%

“…Nurses-European Crohn's & Colitis Organization (N-ECCO) acknowledged that nurses across Europe perform and provide varying roles in caring for patients with IBD. In 2011, they developed the N-ECCO Consensus Statements [11], a consensus on the standard of minimum care that patients with IBD might expect, irrespective of the level of nurse training, title, or country. Caring for IBD patients might include different tasks for different settings such as performing case management, educating patients and following up medication adherence and symptoms management, supporting patients, and helping them in developing self-management strategies [12].…”

Section: Introductionmentioning

confidence: 99%

“…Specialized IBD nurse interventions are often reported as positive and clinically significant [11]. Barlow et al reported that self-management interventions showed improved outcomes in relation to symptom reporting, psychological well-being, and healthcare resource use, but that education alone was less promising [13].…”

Section: Introductionmentioning

confidence: 99%

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Assessment of Inflammatory Bowel Disease Patient's Needs and Problems from a Nursing Perspective

et al. 2015

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Background: In this study, we aimed at assessing Inflammatory Bowel Disease patients' needs and current nursing practice to investigate to what extent consensus statements (European Crohn's and Colitis Organization) on the nursing roles in caring for patients with IBD concur with local practice. Methods: We used a mixed-method convergent design to combine quantitative data prospectively collected in the Swiss IBD cohort study and qualitative data from structured interviews with IBD healthcare experts. Symptoms, quality of life, and anxiety and depression scores were retrieved from physician charts and patient self-reported questionnaires. Descriptive analyses were performed based on quantitative and qualitative data. Results: 230 patients of a single center were included, 60% of patients were males, and median age was 40 (range 18-85). The prevalence of abdominal pain was 42%. Self-reported data were obtained from 75 out of 230 patients. General health was perceived significantly lower compared with the general population (p < 0.001). Prevalence of tiredness was 73%; sleep problems, 78%; issues related to work, 20%; sexual constraints, 35%; diarrhea, 67%; being afraid of not finding a bathroom, 42%; depression, 11%; and anxiety symptoms, 23%. According to experts' interviews, the consensus statements are found mostly relevant with many recommendations that are not yet realized in clinical practice. Conclusion: Identified prevalence may help clinicians in detecting patients at risk and improve patient management.

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Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Assessment of Inflammatory Bowel Disease Patient's Needs and Problems from a Nursing Perspective

et al. 2015

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“…Yet the changing demands of IBD in terms of complex treatment algorithms places the IBD nurse at the centre of care to ensure patient needs are met, and there is an ongoing requirement to deliver high quality evidence-based care. The recent Nurses-European Crohn's and Colitis Organisation (N-ECCO) consensus statements on nursing roles in caring for patients with Crohn's disease or ulcerative colitis included a recommendation for IBD nurses to be involved in research related to their area of expertise 5 .…”

Section: Introductionmentioning

confidence: 99%

Identification of Research Priorities for Inflammatory Bowel Disease Nursing in Europe: a Nurses-European Crohn’s and Colitis Organisation Delphi Survey

Dibley

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Czuber‐Dochan

et al. 2016

ECCOJC

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“…The IBD2020 group agreed that persons with IBD should have access to a recognized IBD multidisciplinary team, including specialist nurses, who can provide them with optimal care, taking into account their physical, emotional and social well-being. All persons with IBD should have opportunities to become more knowledgeable about their disease and the various treatments and support available to them, so that they can, become more actively involved in the clinical decisions of their IBD, if they should wish to (52,90). This is still not the clinical reality for many persons with IBD.…”

Section: Rationale For This Thesismentioning

confidence: 99%

Life situation among persons living with inflammatory bowel disease.

Lesnovska¹

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Living with inflammatory bowel disease (IBD) affects physical, psychological and social dimensions, limiting the ability to engage in daily activities. Persons with IBD may need frequent and lifelong contacts with the healthcare (HC), highlighting the importance of quality care. High quality HC for persons with IBD involves a partnership between the HC professionals and the person living with the disease. Information is essential, the more a person knows about their disease, the more concordant and satisfied with their treatment they are likely to be. The overall aim of this thesis was to describe the knowledge need, life situation and perception of HC among persons living with IBD, in order to develop a questionnaire to evaluate the quality of HC. This thesis is based on three studies that are presented in four papers. Qualitative methods were used to describe aspects of life situation in relation to the disease, whereas quantitative method was used to develop a questionnaire measuring quality of care. Study I and II have an inductive qualitative design. In study I, qualitative interviews with 30 people were performed to describe the knowledge need and experience of critical incidents in daily life while living with IBD. The interviews in study I were analyzed using content analysis (results presented in Paper I) and critical incident technique (results presented in Paper II). In study II, the perceptions of HC among persons living with IBD was explored in five focus group interviews and two individual interviews, in total n=26. Study III aimed to develop and evaluate a questionnaire, measuring quality of care among persons with IBD, including 318 persons with IBD and 8 professionals. The knowledge need among persons with IBD focused on managing symptoms and course of the disease and learning to assimilate the information in order to manage everyday life. Losing bowel control was of great concern for most of the informants in the study. Many of the informants said that “the bowel ruled their life” and that it influenced them to a great extent in their daily lives. The perception of HC among persons with IBD meant being met with respect and mutual trust, receiving information at the right time, shared decision-making, competence and communication, access to care, accommodation, continuity of care and the pros and cons of specialized care. The quality of care questionnaire QoC-IBD was constructed in five dimensions, building on the results from Study I and II. The dimensions were trust and respect, decision-making, information, continuity of care and access to care consisting of 21 questions in total. QoC-IBD is a short, self-administrated questionnaire that measures experiences of healthcare among persons with IBD with promising validity and reliability. To improve quality of care, HC is recommended to consider individual care needs and take the person’s daily life and social context into account. The QoC-IBD questionnaire measures the subjective experience of quality of care. Further testing in clinical practice...

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N-ECCO Consensus statements on the European nursing roles in caring for patients with Crohn's disease or ulcerative colitis

Cited by 116 publications

References 152 publications

Assessment of Inflammatory Bowel Disease Patient's Needs and Problems from a Nursing Perspective

Assessment of Inflammatory Bowel Disease Patient's Needs and Problems from a Nursing Perspective

Identification of Research Priorities for Inflammatory Bowel Disease Nursing in Europe: a Nurses-European Crohn’s and Colitis Organisation Delphi Survey

Life situation among persons living with inflammatory bowel disease.

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