Inflammatory bowel disease (IBD) is a chronic inflammatory disease of the gastrointestinal tract, consisting of Crohn's disease (CD) and ulcerative colitis (UC), characterized by an abnormal immune response in genetically susceptible individuals after exposure to environmental factors that alter their intestinal microbiome.1,2 The prevalence of IBD surpasses 0.3% in North America and Europe,3 but has become a global disease with an accelerated incidence in newly industrialized countries with westernized life style changes. It has been recently estimated that a compound prevalence in North America, Europe, and Australasia will reach 1 in 100 persons by the end of this decade.4 In Spain, an overall incidence of IBD of 16 cases/100,000 person-years has been reported.5 However, the prevalence is increasing rapidly and it has been suggested that in major industrial regions the number of patients may double in approximately 10 years (2018–2028).6

The rising epidemiological trends in a lifelong illness for which there is no cure pose a high economic burden for healthcare systems with increasing consumption of health resources in otherwise progressively aging of IBD populations.7,8 Also, the chronicity, polymorphic clinical features, and high comorbidities and complications of IBD have a tremendous impact on the patients’ health and quality of life.9 Integrated care models as dedicated IBD units based on multidisciplinary teams (MDT) involving comprehensive care by IBD nurses, surgeons, psychologists, dieticians, pharmacists and other members, with structured monitoring, active follow-up, patient education and prompt access to care has been shown to improve outcomes and decrease costs compared with a more traditional physician–patient model.10–13

The key role played by specialized nurses in the management of patients with IBD has been extensively recognized.14,15 The Nurses European Crohn's and Colitis Organisation (N-ECCO) has provided updated consensus statements addressing standards of IBD nursing care and evidence-based guidance enabling IBD nurses to cope with advanced care and encouraging research.16 The “Nursing Now” three-year global campaign (2018–2020) run in collaboration with the World Health Organization and the International Council of Nurses aimed to improve health globally by raising the status and profile of nursing.17 Different surveys in Canada18 and Europe19 have shown the beneficial impact of specialized IBD nurses in the care of patients, although the exact depth of care and services remains unclear and there is a large variability of nursing profiles, roles and responsibilities with insufficient and heterogeneous presence in IBD units.

In Spain, the development of MDT for the management of IBD patients that include specialized nurses has been slowly implemented and geographically disperse. The Spanish Working Group on Crohn's Disease and Ulcerative Colitis (GETECCU) developed a nationwide quality certification program for IBD units (named CUE), based on a comprehensive set of quality Indicators of structure, process, and outcomes.20 However, although the first quality indicator of the program was the presence of a nurse in the IBD unit, the defining criteria of the role and competences of this specialized nurse are still poorly established. Despite the cost-efficacy benefit of nursing consultation and the influence of nurses’ interventions for improving the patients’ quality of life demonstrated in different studies,15,21,22 there is a translational gap that prevents encouraging the existence or specialization of this advanced nursing role in healthcare centers. In fact, the heterogeneity of care models and their influence on the management of patients prompted the development of standards of healthcare quality for nursing management of IBD and the design of an evaluation tool based on these standards, the Nursing Care Quality in IBD Assessment (NCQ-IBD), which was published and validated in 2013.23 However, the experience using this questionnaire is limited to a study of IBD nursing care in Finland.24

Therefore, the present study was designed to provide a comprehensive nationwide assessment of the current status of nursing care for patients with IBD.

Of a total of 120 eligible participants who received the study questionnaire, responses from 92 of them were obtained (response rate 77.5%). These 92 participants provided data on demographics, professional experience, and working conditions. Data regarding quality of care in the management of patients with IBD (NCQ-IBD completed questionnaires) were provided by 71 centers.

Identification of areas of improvement is not only highly relevant for patient care and outcomes, but also contributes to reduce variability in clinical practice. The profile of participants was a middle-aged female, with more than 2 years of experience in IBD, working in a high-volume IBD unit for adults belonging to public centers, and primarily dedicated to the patient's care. These professional characteristics enhance the reliability of results obtained using the NCQ-IBD questionnaire.

Category B of the NCQ-IBD healthcare quality for nursing management of IBD was achieved in 74.6%. The highest A category was achieved in only 2.8% of cases. This could be explained by the high nurse caseload that prevented to achieve the requirement of less than 6 working days waiting for the first regular consultation with the IBD nurse (item #29). In the previous study of certification of inflammatory bowel disease units by GETECCU, among the 53 units already audited, 31 (58.5%) achieved the certification of excellence.20 In this study, the waiting time for the first consultation with a specialized nurse was not defined, which could make us to reconsider that the weight of item #29 might be a limiting feature in the global assessment of the quality of nursing management in IBD. The units were well-equipped with a direct telephone helpline, e-mail access, EHRs, educational materials for patients, as well as computer and electronic database facilities, all housed in their own clinical space. These quality indicators have been also identified in the GETECCU certification program.20 However, the location of the IBD units on the hospital maps and the signage on nursing consultation doors, which were indicated in only 19.7% and 49.3% of cases, respectively, are areas that need improvement.

IBD should be ideally managed in the setting of a multidisciplinary team25 with specialized nurses playing an important role within this team. To achieve optimum proactive management of care, it has been recommended a caseload of 2.5 FTE IBD specialist nurse per 250,000 patient populations, which gives a static caseload of 500 per FTE.26 As shown in Fig. 1, our current patients/IBD nurses ratio is insufficient and much lower than recommended standards. This insufficient ratio is a main factor for the impossibility to achieve less than 6 days waiting time for the first consultation (item #29), and is also related to the limited presence of full-time nurses. Although 70% of units had an IBD nurse, unfortunately 40% worked two days a week and only 39% full-time. These data indicate some discrepancy with findings in Table 2, but might be explained due to participants’ personal interpretations of FTE meaning. The sum of factors such as the limited presence of full-time nurses, the high patients/nurses ratio, and the lack of administrative support may have a relationship with the number of overtime hours that nurses have to work and coverage for vacations and sick leave. In this respect, it has been shown that nurse-led telephone services are very effective for resolution of a wide range of patient queries in IBD.27 In an update of the quality criteria for IBD care units from a multi-stakeholder perspective and using multicriteria decision analysis, the presence of IBD nurses, gastroenterologists, experienced surgeons, endoscopists, and radiologists in the IBD multidisciplinary team was considered the most important structural aspect of an IBD comprehensive care unit.28 The CUE program has promoted and facilitated the inclusion of specialized nurses in IBD units. However, the lack of a definite minimum number of working hours in its standard, stating only that a nurse must be present in the MDT, results in significant heterogeneity and inequity in IBD nursing care across the country. On the other hand, despite IBD nurses serving as the primary point of contact between patients and healthcare services, the IBD nurse role may frequently remain uncovered during holidays or sick leaves.24,26,29

Figure 1.

Distribution of patients attended in IBD units showing that the ratio patients/IBD nurses is insufficient. (No.=number).

If we focus on the availability of nutrition services and dietitians this was surprisingly low, despite the well-known importance of nutritional aspects and dietary recommendations in the management of IBD.30 A high percentage of participants reported specialists available for referrals, but the presence of psychologists was unexpectedly very low, although more than 70% of participants used scales for assessing anxiety/depression and more than 50% reported training in adherence to medication, quality of life instruments, and anxiety/depression questionnaires.

Two quality indicators including IBD classification scores and activity indexes were evaluated by a markedly low percentage of participants (19% and 25%, respectively) as compared to 89% who reported the use of clinical practice guidelines or protocols in the management of patients with IBD. These results highlight the need to incorporate these tools in clinical practice to help IBD-specialized nurses assess the activity and severity of the patients’ condition. In a cross-sectional survey study using the same NCQ-IBD questionnaire and conducted in 27 tertiary IBD outpatient clinics in Finland, a significant lack in the usage of structured tools such as IBD activity indexes was also documented.24 These findings underscore the need to incorporate structured clinical tools into routine nursing practice and to reflect on the factors limiting their implementation. Time constraints, insufficient training, lack of standardized protocols, and the non-integration of indexes into electronic health records, are frequently reported barriers in diverse healthcare settings.24–31Addressing these gaps requires not only institutional support to provide protected time, but training and digital tools that facilitate it's systematic utilization. At the same time, IBD nurses must actively prioritize their use to support clinical decisions with measurable, standardized indicators. Strengthening this practice will allow for more precise patient monitoring, enhance the comparability of outcomes, and contribute to the visibility and professional recognition of nursing care in IBD.

Medication management and patient education on medication self-administration are prominent features in IBD. All participants in our study educate their patients on medication self-administration and were actively involved in crucial aspects of the IBD patients’ care, including modification of treatment based on physician's recommendations, review of medication at the time of consultation, and follow-up and control of compliance with treatment. Other important activities, such as assessment of nutritional status and offering support and understanding to patients and family groups to cope with diagnosis and to live with IBD were mentioned by around 60% of participants. Accordingly, IBD nurses may play a relevant role for counseling and improving the dietary patterns of people with IBD.

Nursing training and research in IBD was not very active according to results of the present survey. It would be important to potentiate training activities in comprehensive clinical aspects of IBD as only 15.5% of participants reported having being received this kind of training, as well as communication skills for supporting the patients and managing stress. Over the last three years a university-level master's degree (60 ECTS) specifically dedicated to IBD nursing has been established in Spain.32 This program, promoted by GETEII, offers a more structured and comprehensive training pathway for nurses specializing in this area. The expanding availability of such initiatives foresees to facilitate future efforts toward specialized competencies, formal recognition and accreditation of the IBD nursing role. The experience in research was also limited, with low percentages of participants taking part in research projects, presentations at scientific meetings, and publications in journals during the past 5 years. This may be explained by the fact that clinical work of IBD nursing is usually emphasized over research. In a survey carried out in the United Kingdom among 274 nurses involved in the care of patients with CD, 28% described other clinical responsibilities within their role, including more general gastroenterology, nurse endoscopist, ward working and research, although specific data on research was not reported.26

Limitations of the study include the reduced number of participants. Despite utilizing the 2018 national hospital registry (listing 804 hospitals) and undertaking extensive outreach efforts through collaborative groups to identify eligible nurses (beyond accredited IBD Units), recruiting a larger sample proved difficult. This process often required navigating through complex hospital administrative structures, sometimes starting with patient information services to ultimately reaching the Head nurse.

It should be noted that at the time of the study, only 53 units were accredited by GETECCU, whereas the study sample comprised 71 centers. This extensive recruitment strategy likely mitigate the risk of significant selection bias, enhancing the representativeness of the sample and capturing a broader spectrum of IBD nurses beyond only those in highly developed or accredited units.

Another reason may be explained by the need to complete the NCQ-IBD instrument, which a large 90-item questionnaire during the daily high workload. However, an important reason of the limited study population may be the shortage of specialized IBD nurses around the country, although a total of 53 IBD units achieved quality certification by the GETECCU. The scarcity of IBD nurse specialists has been emphasized in other studies.33,34

The main strength of this study it is being the first nationwide survey to assess the quality of nursing care for IBD patients. The findings provide valuable baseline knowledge on the current state of specialized IBD nursing, allowing for the identification of areas for improvement and serving as a reference for future research.

In this context, research agenda focuses on developing a professional practice framework for nurses involved in IBD care. This will enable nurses, regardless of where they work, to provide consistent care to all IBD patients around the territory. Continuing this approach, it raises the need for developing measurable, standardized indicators for registering IBD nursing interventions and its quantifiable outcomes. This framework could help ensure these indicators are clearly defined.

This survey study, conducted among nurses working in IBD units across Spain using a validated instrument, provides data on various aspects regarding the characteristics and activities of IBD nurses. The overall quality of care, rated across four categories was scored as B (high) in 75% of participants. The development of IBD nursing activities was highly satisfactory, encompassing patient management, adherence to clinical practice guidelines or protocols, medication evaluation, and education on medication self-administration. However, specific areas for improvement identified in the study included better visibility of the IBD unit on the hospital map, the signage on consultation room doors, administrative support, holiday coverage, encouraging research and especially, increasing the ratio of nurses working full-time.

The study protocol was approved by the Clinical Research Ethics Committee (CEIC) of Hospital Universitari Vall d’Hebron (code: PR(AG)617/2020), Barcelona, Spain.

No funding has been received for this study.

None declared.