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PROFILE OF INFLAMMATORY BOWEL DISEASE NURSES IN BRAZIL

Perfil dos enfermeiros especialistas em doença inflamatória intestinal no Brasil

ABSTRACT

Background:

Nurses play a fundamental role within the inflammatory bowel disease (IBD) multidisciplinary team.

Objective:

To identify the profile of IBD nurses in Brazil and their work process organization and characterize the health services where they work.

Methods:

A questionnaire-based research was developed. The inclusion criteria were nurses with experience in IBD care, nurses with scientific research published in an indexed journal or in process, nurses with master’s or doctorate degrees concluded or in progress, and educator nurses with expertise in IBD.

Results:

Seventy-four nurses were included, among whom 66 (89.19%) were women; their mean age was 40.63±9.98 years. Sixty-six percent work in the Southeast region, and more than half (54.05%) had a specialization course. Only four (5.41%) nurses worked exclusively with patients with IBD. The main areas of activity were outpatient clinics (39%) and ostomy care (35%). Nursing care was based on the nursing process (51.35%), and the main topics approached in nursing appointment were treatment adherence (72.97%), and ostomy (68.92%). Forty-seven (63.51%) nurses had knowledge on immunosuppressive medications and 52 (70.27%) on biological therapy. Most health services were integrated with a hospital that has clinical (72.97%) and surgical hospitalization units (67.57%), and 46 (62.16%) of them had an infusion center.

Conclusion:

Describing the work process of IBD nurses can supplement their organization of the IBD assistance process, as they do not follow any specific consensus. In addition, the characteristics necessary for IBD care are not found in all health services.

Keywords:
Nurses; Crohn disease; ulcerative colitis; inflammatory bowel diseases; Brazil

RESUMO

Contexto:

Enfermeiros desempenham um papel fundamental na equipe multidisciplinar das doenças inflamatórias intestinais.

Objetivo:

Identificar o perfil dos enfermeiros especialistas em doença inflamatória intestinal no Brasil e a organização do processo de trabalho e caracterizar os serviços de saúde onde atuam.

Métodos:

Estudo transversal, desenvolvido com aplicação de questionário. Os critérios de inclusão foram enfermeiros com experiência na assistência às doenças inflamatórias intestinais, enfermeiros com pesquisas científicas publicadas em periódico indexado ou em andamento, enfermeiros com mestrado ou doutorado concluídos ou em andamento e enfermeiros educadores com expertise em doenças inflamatórias intestinais.

Resultados:

Foram incluídos 74 enfermeiros, dos quais 66 (89,19%) eram mulheres; a média de idade foi de 40,63±9,98 anos. Sessenta e seis por cento trabalham na região Sudeste, e mais da metade (54,05%) possui curso de especialização. Apenas quatro (5,41%) enfermeiros trabalhavam exclusivamente com pacientes com doença inflamatória intestinal. As principais áreas de atuação foram: ambulatório (39%) e cuidados com ostomia (35%). A assistência de enfermagem foi pautada no processo de enfermagem (51,35%) e os principais temas abordados na consulta de enfermagem foram adesão ao tratamento (72,97%) e estomia (68,92%). Quarenta e sete (63,51%) enfermeiros tinham conhecimento sobre medicamentos imunossupressores e 52 (70,27%) sobre terapia biológica. A maioria dos serviços de saúde estava integrada a um hospital que possui unidades de internação clínica (72,97%) e cirúrgica (67,57%), sendo que 46 (62,16%) deles possuíam centro de infusão.

Conclusão:

Descrever o processo de trabalho do enfermeiro em doença inflamatória intestinal brasileira pode complementar a organização no processo de assistência à doença inflamatória intestinal, uma vez que não segue nenhum consenso específico. Além disso, as características necessárias para o cuidado das doenças inflamatórias intestinais não são encontradas em todos os serviços de saúde.

Palavras-chave:
Enfermeiros; doença de Crohn; retocolite ulcerativa; doenças inflamatórias intestinais; Brasil

HIGLIGHTS

•An identification of the profile of inflammatory bowel disease nurses in Brazil was peformed, and only four nurses worked exclusively with patients with inflammatory bowel disease.

•The main areas of activity were outpatient clinics and ostomy care.

•Nursing care was based on the nursing process, and the main topics approached in these appointments were treatment adherence and ostomy.

•Nurses showed knowledge on immunosuppressive medications and biological therapy.

INTRODUCTION

Inflammatory bowel disease (IBD) comprising Crohn’s disease (CD) and ulcerative colitis (UC) is a chronic, relapsing-remitting inflammatory condition with increasing incidence and prevalence worldwide. Patients with IBD require lifelong care for their condition, as they often experience diminished quality of life and reduced work productivity and disability11. Gomollón F, Dignass A, Annese V, Tilg H, Assche GV, Lindsay JO, et al. 3rd European Evidence-based Consensus on the Diagnosis and Management of Crohn’s Disease 2016: Part 1: Diagnosis and Medical Management. J Crohns Colitis. 2017;11:3-25.,22. Magro F, Gionchetti P, Eliakim R, Ardizzone S, Armuzzi A, Barreiro-de Acosta M, et al. Third European Evidence-based Consensus on Diagnosis and Management of Ulcerative Colitis. Part 1: Definitions, Diagnosis, Extra-intestinal Manifestations, Pregnancy, Cancer Surveillance, Surgery, and Ileo-anal Pouch Disorders. J Crohns Colitis . 2017;11:649-670.. Owing to the complexity of this disease and the negative impact on patients’ quality of life and body image33. Faust AH, Halpern LF, Danoff-Burg S, Cross RK. Psychosocial factors contributing to inflammatory bowel disease activity and health-related quality of life. Gastroenterol Hepatol (N Y). 2012;8:173-81., their management should be performed by a multidisciplinary team to ensure comprehensive, adequate, humanized, and continued care support44. Calvet X, Panés J, Alfaro N, Hinojosa J, Sicilia B, Gallego M, et al. Delphi consensus statement: Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units. J Crohns Colitis . 2014;8:240-51.,55. The IBD Standards Group. Standards for the Healthcare of People who have Inflammatory Bowel Disease (IBD). Available from: http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/PPR/ibd-standards.pdf
http://s3-eu-west-1.amazonaws.com/files....
.

The IBD multidisciplinary team ensures interdependent actions complementing diagnosis and therapeutic skills66. Ricci C, Lanzarotto F, Lanzini A. The multidisciplinary team for management of inflammatory bowel diseases. Dig Liver Dis. 2008;40 Suppl 2:S285-S288., thus providing specialized care and improving outcomes77. Sturm A, White L. Inflammatory Bowel Disease Nursing Manual. 1ª ed. Switzerland: Springer; 2019.. The ideal IBD multidisciplinary team comprises a gastroenterologist, a coloproctologist, an IBD specialized nurse, a stoma nurse, a radiologist with experience in IBD, a nutritionist, a pathologist, a psychologist, and a social worker44. Calvet X, Panés J, Alfaro N, Hinojosa J, Sicilia B, Gallego M, et al. Delphi consensus statement: Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units. J Crohns Colitis . 2014;8:240-51.,55. The IBD Standards Group. Standards for the Healthcare of People who have Inflammatory Bowel Disease (IBD). Available from: http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/PPR/ibd-standards.pdf
http://s3-eu-west-1.amazonaws.com/files....
. In addition, easy access to specialists, such as a rheumatologist, a dermatologist, an ophthalmologist, a gynecologist/obstetrician, and a pediatrician, is essential88. Louis E, Dotan I, Ghosh S, Mlynarsky L, Reenaers C, Schreiber S. Optimising the Inflammatory Bowel Disease Unit to Improve Quality of Care: Expert Recommendations. J Crohns Colitis . 2015;9:685-91.,99. Tursi A, Elisei W, Picchio M. Incidence and prevalence of inflammatory bowel diseases in gastroenterology primary care setting. Eur J Intern Med. 2013;24:852-6..

Nurses play a fundamental role within the multidisciplinary team, acting directly in health promotion, prevention, recovery, and rehabilitation1010. Federal Nursing Council. Resolution COFEN-240/2000 - Revoked by Resolution COFEN-311/2007, it approves the Code of Ethics for Nursing Professionals and provides other measures. Brasília; 2020. Available from: http://www.cofen.gov.br/resoluo-cofen-2402000-revogada-pela-resoluo-cofen-3112007_4280.html#:~:text=30%2F08%2F2000-,RESOLU%C3%87%C3%83O%20COFEN%2D240%2F2000%20%E2%80%93%20Revogada,pela%20RESOLU%C3%87%C3%83O%20COFEN%2D311%2F2007&text=O%20Conselho%20Federal%20de%20Enfermagem,suas%20atribui%C3%A7%C3%B5es%20legais%20e%20regimentais%3B&text=1%C2%BA%20%E2%80%93%20Fica%20aprovado%20o%20C%C3%B3digo,todos%20os%20Conselhos%20de%20Enfermagem
http://www.cofen.gov.br/resoluo-cofen-24...
; providing guidance on the benefits and side effects of treatment; and elucidating surgical treatment and stomas, disease management, and possible complications. They are also primordial for treatment acceptance and adherence; assessment of quality of life, anxiety, and depression; identification of altered social factors; stimulation of self-care; and inclusion of family and community in the treatment1111. da Silva SS, Colósimo FC, Pierin AM. O efeito de intervenções educativas no conhecimento da equipe de enfermagem sobre hipertensão arterial (The effect of educational interventions on nursing team knowledge about arterial hypertension). Rev Esc Enferm USP. 2010;44:488-96.. For achieving these objectives, it is recommended that nursing care be systematized and individualized to ensure comprehensive and holistic patient care77. Sturm A, White L. Inflammatory Bowel Disease Nursing Manual. 1ª ed. Switzerland: Springer; 2019..

Inflammatory bowel disease nursing care positively impacts self-management1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76.

13. Kennedy AP, Nelson E, Reeves D, Richardson G, Roberts C, Robinson A, et al. A randomised controlled trial to assess the effectiveness and cost of a patient orientated self management approach to chronic inflammatory bowel disease. Gut. 2004;53:1639-45.
-1414. Rettke H, Staudacher D, Schmid-Büchi S, Habermann I, Spirig R, Rogler G. Inflammatory bowel diseases: experiencing illness, therapy and care. Pflege. 2013;26:109-18. and patients’ quality of life1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76.

13. Kennedy AP, Nelson E, Reeves D, Richardson G, Roberts C, Robinson A, et al. A randomised controlled trial to assess the effectiveness and cost of a patient orientated self management approach to chronic inflammatory bowel disease. Gut. 2004;53:1639-45.
-1414. Rettke H, Staudacher D, Schmid-Büchi S, Habermann I, Spirig R, Rogler G. Inflammatory bowel diseases: experiencing illness, therapy and care. Pflege. 2013;26:109-18., helps reduce hospital visits1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76.

13. Kennedy AP, Nelson E, Reeves D, Richardson G, Roberts C, Robinson A, et al. A randomised controlled trial to assess the effectiveness and cost of a patient orientated self management approach to chronic inflammatory bowel disease. Gut. 2004;53:1639-45.
-1414. Rettke H, Staudacher D, Schmid-Büchi S, Habermann I, Spirig R, Rogler G. Inflammatory bowel diseases: experiencing illness, therapy and care. Pflege. 2013;26:109-18. and anxiety and depression rates1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76.,1515. Barlow C, Cooke D, Mulligan K, Beck E, Newman S. A critical review of self-management and educational interventions in inflammatory bowel disease. Gastroenterol Nurs. 2010;33:11-8.,1616. Elkjaer M, Moser G, Reinisch W, Durovicova D, Lukas M, Vucelic B, et al. IBD patients need in health quality of care ECCO consensus. J Crohns Colitis . 2008;2:181-8., and helps achieve favorable clinical outcomes1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76.,1717. Sack C, Phan VA, Grafton R, Holtmann G, van Langenberg DR, Brett K, et al. A chronic care model significantly decreases costs and healthcare utilisation in patients with inflammatory bowel disease. J Crohns Colitis . 2012;6:302-10.. One of the main purposes of an IBD nurse is to act as an advocate for their patients with IBD. In addition, IBD nurses are responsible for providing education and advice to patients, facilitating access to IBD services when patients experience a flare of the disease and rapid response through telephone calls and emails, and monitoring drug treatment; especially, nurses should serve as the professional who facilitates connection with the multidisciplinary team, providing greater empowerment to patients with these chronic diseases1818. Burkhalter H, Stucki-Thür P, David B, Lorenz S, Biotti B, Rogler G, et al. Assessment of inflammatory bowel disease patient’s needs and problems from a nursing perspective. Digestion. 2015;91:128-41.. Further, health services led by nurses are more profitable and beneficial not only for patients but also for health professionals1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76..

Active participation of nurses in IBD care and science is indispensable, given the increasing incidence and prevalence of the disease1919. Gasparini RG, Sassaki LY, Saad-Hossne R. Inflammatory bowel disease epidemiology in São Paulo State, Brazil (published correction appears in Clin Exp Gastroenterol. 2020 Jun 16;13:221). Clin Exp Gastroenterol. 2018;11:423-429.. However, there are no data on the role of nurses in IBD care in Brazil. It is essential to characterize nursing care in the health-disease process in these patients.

The aims of the study were to identify the profile of IBD nurses in Brazil, identify the organizational structure of the nursing process, and characterize the health services where these nurses work.

METHODS

This study was a questionnaire-based research. The nurses were identified through their register in the Brazilian National Council for Scientific and Technological Development and Brazilian Organization for Crohn’s Disease and Colitis (GEDIIB) and references from colleagues. The inclusion criteria were nurses who had experience in IBD care, nurses with concluded or in progress scientific research in IBD, nurses with an IBD article published in an indexed journal, nurses with concluded or in progress master’s or doctorate degrees in IBD, and educator nurses with expertise in IBD.

A total of 345 eligible nurses were identified through the Brazilian National Council for Scientific and Technological Development (n=237), the GEDIIB (n=27), and colleagues’ recommendation (n=81). An email with the study details and additional questions on their activities performed was sent, and 193 nurses responded. After screening according to the inclusion and exclusion criteria, 121 were invited to participate, and 74 (61.16%) answered the questionnaire and were included in the study (Figure 1).

FIGURE 1
Nurse’s identification flowchart.

Sociodemographic and professional data were assessed through a specific survey formulated with 37 questions. Information on IBD training received during the graduation course, experience in IBD care, characteristics of local nursing care in IBD, topics addressed during IBD nursing appointments, knowledge on IBD, interest in IBD updates, and health service peculiarities was obtained (see supplementary material).

The questionnaire was based on the Second N-ECCO Consensus Statements on European Nursing Roles in Caring for Patients with CD or UC1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76. and on quality indicators for comprehensive care units for patients with IBD prepared by the Spanish Working Group on CD and UC (GETECCU)2020. Spanish working group on Crohn’s Disease and Ulcerative Colitis - GETECCU. Standardization of Quality Indicators for Comprehensive Care Units for patients with Inflammatory Bowel Disease. Bilbao (Spain); 2016. Available from: https://geteccu.org/contenidos/up/2016/12/Documento-1.pdf
https://geteccu.org/contenidos/up/2016/1...
. Data were collected from May to November 2018.

The study was approved by the Local Research Ethics Committee. All participants received explanations on the study objectives and expected results and were enrolled in the study only after signing the informed consent form.

A descriptive analysis was performed for population characterization, calculating the mean and standard deviation or median and quartiles for quantitative variables and frequencies and proportions for qualitative variables.

RESULTS

Sociodemographic and professional data

The study included 74 nurses, among whom 66 (89.19%) were women; their mean age was 40.63±9.98 years, ranging from 25 to 67 years. They originated from all Brazilian geographic regions: Southeast (66.22%), Northeast (13.51%), South (9.46%), North (6.75%), and Midwest (4.05%).

Regarding academic education, 58.11% of them graduated from a private educational institution. Regarding academic education in IBD, 28 (37.84%) answered that it was unsatisfactory, and 32 (43.24%) had no knowledge on the disease during graduation. The education level varied as complete specialization courses (54.05%), master’s degree (41.89%), doctorate degree (8.11%), and postdoctoral studies (1.35%). Fifteen nurses (20.27%) had completed a postgraduate course in stomatherapy. The mean experience time since graduation was 13.82±9.88 years, and 35 (47.30%) had experience as a nurse for more than 10 years.

The workplace varied among a hospital (47.30%), a college or university (35.14%), a public medical outpatient clinic (25.68%), a private clinic (21.62%), and an infusion center (10.81%). Their occupation varied as follows: care nurse (58.11%), academic nurse (29.73%), and coordinator or supervisor nurse (22.97%). The work period varied from 1 to 5 years (37.84%), 6 to 10 years (14.86%), and 11 to 15 years (17.57%). The mean weekly workload was 34.05±8.39 hours.

Professional experience in IBD

Sixty-four (86.49%) nurses reported attending to patients with IBD, 49 (76.56%) to an adult population, 2 (3.13%) to a pediatric population, and 13 (20.31%) to both adult and pediatric populations. Only four (5.41%) nurses worked exclusively with patients with IBD. The mean time of working with patients with IBD was 6.40±5.41 years. The setting of contact with patients with IBD was as follows: outpatient clinics (39%), stomatherapy (35%), clinical or surgical hospitalization unit (34%), endoscopy department (14%), teaching (12%), infusion center (11%), and clinical research (8%). The nursing care provided by the participants was based on the following: a) nursing process (51.35%), theory of basic human needs as a theoretical reference (33.78%), and theory of self-care (32.43%); b) personal experience (47.30%); c) institutional nursing protocol (32.43%); d) international protocol (18.92%); and e) colleagues’ experience (12.16%).

The main topics addressed during IBD nursing consultation were adherence to treatment (72.97%), ostomy (68.92%), patients’ quality of life (68.92%), and disease activity (60.81%), (Table 1). Inflammatory bowel disease care was performed by a multidisciplinary team composed of nurses (71.62%), coloproctologists (64.86%), gastroenterologists (58.11%), and nutritionists (56.76%) in most services (Table 2).

TABLE 1
Topics discussed during nursing consultations for inflammatory bowel disease.

TABLE 2
Composition of the multidisciplinary team for inflammatory bowel disease.

Regarding specific IBD knowledge, 47 (63.51%) nurses answered yes to the following question: “Do you know any immunosuppressive drugs used in IBD treatment?” Azathioprine (74.47%) was the most cited drug, followed by methotrexate (25.53%), corticosteroids (25.53%), and cyclosporine (19.15%). Conversely, 52 (70.27%) responded positively to the following question: “Do you know any biological therapy used to treat IBD?” Infliximab was the most cited drug (84.62%), followed by adalimumab (61.54%), vedolizumab (26.92%), ustekinumab (17.31%), certolizumab (15.38%), etrolizumab (1.92%), and guselkumab (1.92%).

Regarding professional development in IBD, 48 (64.86%) nurses get informed on IBD through websites, 44 (59.46%) through scientific articles, 40 (54.05%) through scientific events, 37 (50%) from other nurses, 34 (45.95%) from physicians, 20 (27.03%) from pharmaceutical companies, 19 (25.68%) from study groups, 17 (22.97%) from teachers, and 10 (13.51%) through extension courses provided by universities. Thirty-three (44.59%) nurses reported having participated in IBD nursing-specific courses. Twenty-seven (36.49%) nurses had participated in IBD conferences at least once a year and 23 (31.08%) in IBD research projects.

Regarding self-assessment in IBD knowledge, 55 (74.32%) reported that it was insufficient, although the majority considered IBD a relevant topic (85.14%); therefore, 62 (83.78%) would like to learn more of this topic.

Characteristics of health services attended by nurses

A total of 74 health services were evaluated on the basis of the participating nurses’ report. Thirty (40.54%) services performed clinical meetings to discuss cases, and the periodicity was weekly in half of them. Twenty-three (31.08%) services organized group therapy with patients with IBD coordinated by a nurse (21.62%) or by a psychologist (17.57%). Continuing education for the nursing team was realized in 51 (68.92%) services, of which 44.44% focus on IBD.

According to the nurses, advices given on the risks and benefits of surgery, biological therapy, and immunosuppressants were documented and organized in 43.24%, 44.59%, and 31.08% of the services, respectively. Tuberculin skin test was performed by 28 (37.84%) services as a screening test for biological therapy. The nurses had an active participation in taking care of hospitalized patients in 50% of the services. Elective surgeries were performed by surgeons of an IBD team in 33.78%, and it was found that only one-third (32.43%) of the services had ostomy demarcation performed by a trained nurse or by a stoma nurse. Patients were vaccinated with special immunobiologicals in 29.73%, and 29 (39.19%) services participated in academic research projects.

Most health services were integrated with a hospital with clinical hospitalization units (72.97%), surgical units (67.57%), endoscopy service (70.27%), computed tomography (59.46%), urgency and emergency units (58.11%), pathology (54.05%), nuclear magnetic resonance imaging (52.70%), and endoscopic dilation (40.54%).

IBD health services involved the following: patients’ visit card (18.92%), patient database (66.22%), database of patients using biological therapy (44.59%), specific protocol for patients receiving biological therapy (36.49%), surveillance protocol for patients using biological therapy (27.03%), protocol for patients receiving immunosuppressant therapy (20.27%), surveillance protocol for colorectal cancer (16.22%), protocol for the prevention of thromboembolic complications in hospitalized patients (20.27%), telephone appointment service (28.38%), availability of contact by e-mail (20.27%), and user satisfaction survey (32.43%).

Forty-six (62.16%) health services had an infusion center with essential equipment for patient care (Table 3). Medication was administered generally by nursing technicians (44.59%) or by nurses (44.59%). The health professionals present during medication administration were nurses from the service (36.49%), physician sit-ins (25.68%), IBD team nurses (12.16%), and doctors from another specialty (12.16%).

TABLE 3
Structure of the infusion centers from the health services.

DISCUSSION

The success of IBD treatment depends on the support provided to patients and on the multidisciplinary team performance. Nurses play an indispensable role in patient guidance and in-service organization. Despite the growing number of patients with IBD1919. Gasparini RG, Sassaki LY, Saad-Hossne R. Inflammatory bowel disease epidemiology in São Paulo State, Brazil (published correction appears in Clin Exp Gastroenterol. 2020 Jun 16;13:221). Clin Exp Gastroenterol. 2018;11:423-429. and services, there are no data on the role of nursing care of patients with IBD in Brazil. This study identified that most of the Brazilian nurses worked in the Southeast region, had specialization or postgraduate courses, and believed that their IBD training during graduation was unsatisfactory. The main strategy to update their IBD knowledge was browsing of websites, reading of scientific articles, and participation in conferences. Further, nursing care was based on the nursing process, and the main topics discussed during nursing appointments were treatment adherence, ostomy, patients’ quality of life, clinical disease activity, and treatment.

The European consensus on IBD nursing, published by the European Organization for CD and UC1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76., shows the importance of nurses in the management of patients with IBD, elucidating the role of nursing in addressing and supporting and advocating for patients with IBD. The ECCO consensus on IBD nursing explains that nurses caring for patients with IBD should: have a fundamental understanding of clinical and surgical treatment; be aware of patients’ main concerns and the disease impact on quality of life; know how to identify patients’ needs and ensure adequate access to specialized care. To the utmost, nurses should work in partnership with a multidisciplinary team, including stoma nurse. It is recommended that they are capable in recognizing possible nutritional complications. Therefore, it is imperative that nurses are able to support and refer the patient as appropriate. Based on the collaboration with other members of the IBD multidisciplinary team, IBD nurses can develop and implement new protocols to improve surveillance and follow-up of patients and monitoring of clinical parameters and patient-reported outcomes along the disease course and apply therapeutic interventions88. Louis E, Dotan I, Ghosh S, Mlynarsky L, Reenaers C, Schreiber S. Optimising the Inflammatory Bowel Disease Unit to Improve Quality of Care: Expert Recommendations. J Crohns Colitis . 2015;9:685-91..

Despite the European consensus on IBD nursing1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76. highlighting the role and importance of nurses and cost reduction for health services2121. Beard JA, Franco DL, Click BH. The Burden of Cost in Inflammatory Bowel Disease: A Medical Economic Perspective and the Future of Value-Based Care. Curr Gastroenterol Rep. 2020;22:6., only 5.41% of them worked exclusively in this area, unlike that observed in other countries22, 23. The lack of IBD specialization courses and knowledge on the subject was the main reason for the low percentage of nurse specialists in IBD. Only recently, an increasing number of scientific events and other ways of disseminating knowledge on this topic are occurring, with greater stimulation of continuing education for health professionals in IBD. This subject is not adequately studied in medical and nursing schools, as observed with the high percentage of nurses who did not have enough IBD instruction in their respective universities (43.24%). In Brazil, nurses receive a generalist training during graduation, according to the Curricular Guidelines of Medical and Nursing Courses2424. Ministry of Education. National curricular guidelines for undergraduate nursing, medicine and nutrition courses. Brasília (DF); 2001.Availble from: http://portal.mec.gov.br/dmdocuments/ces1133.pdf
http://portal.mec.gov.br/dmdocuments/ces...
,2525. Ministry of Education. National curricular guidelines for the undergraduate medical course and other measures. Brasília, (DF) ; 2014. Available from: http://portal.mec.gov.br/index.php?option=com_docman&view=download&alias=15874-rces003-14&category_slug=junho-2014-pdf&Itemid=30192
http://portal.mec.gov.br/index.php?optio...
.

Another key factor regarding IBD being understudied during graduation or specialization courses is the fact that most participants refer IBD self-knowledge as insufficient, and the consequences can be seen in the answers obtained. Almost half of them performed nursing care based on their own experience and more than 10% on their colleagues’ experience, although it is recommended2626. Federal Nursing Council. Resolution COFEN-358-2009. Provides for the Systematization of Nursing Assistance and the implementation of the Nursing Process in environments, public or private, in which professional nursing care occurs, and provides other measures. Brasília, (DF); 2009. Available from: http://www.cofen.gov.br/resoluo-cofen-3582009_4384.html
http://www.cofen.gov.br/resoluo-cofen-35...
that the nursing process should be based on a nursing theory2727. Tannure MC, Pinheiro AM. SAE, Systematization of Nursing Care: Practical Guide. Guanabara Koogan; 2017.. An alarming fact is that less than half of the services performed tuberculin skin test before starting biological therapy, against all recommendations22. Magro F, Gionchetti P, Eliakim R, Ardizzone S, Armuzzi A, Barreiro-de Acosta M, et al. Third European Evidence-based Consensus on Diagnosis and Management of Ulcerative Colitis. Part 1: Definitions, Diagnosis, Extra-intestinal Manifestations, Pregnancy, Cancer Surveillance, Surgery, and Ileo-anal Pouch Disorders. J Crohns Colitis . 2017;11:649-670., especially in Brazil, an endemic area for tuberculosis. Continuing education and dissemination of treatment protocols should be conducted to improve professionals’ awareness on the importance of accurate management of IBD.

Other important data are the routine care of patients with IBD. Nursing care should be organized and supported; however, the extensive workload and some precarious work conditions may justify the lack of adequate documentation of care provided. No data were collected on work conditions; therefore, we cannot reach this conclusion. However, most services were publicly funded, and we can speculate that insufficient qualified labor exists among services. Both situations would interfere negatively in the quality of care provided.

Some positive points of nursing care should be emphasized; for example, 35% of nurses work with stomatherapy. Stomatherapy is a nursing specialization for patients with stomas, wound, and incontinence2828. Santos VLCG, Cesaretti IUR. Stomatherapy assistance - caring for people with ostomy. 2ª ed. Atheneu; 2015.. Nevertheless, only one-third of the services allowed performance of the previous ostomy demarcation by a trained nurse. This step is extremely important for patients; some of its advantages are prevention of skin complications around the ostomy, easy handling of collection bag and hygiene of the ostomy and skin, better quality of life, and early rehabilitation2828. Santos VLCG, Cesaretti IUR. Stomatherapy assistance - caring for people with ostomy. 2ª ed. Atheneu; 2015..

Herein, not all participants had sufficient knowledge regarding the medications used in IBD treatment, such as immunosuppressants and biological therapy. Despite this, some medications currently investigated in clinical trials were mentioned, such as etrolizumab and guselkumab, demonstrating engagement with new therapies and involvement with industry-sponsored clinical research or academic research.

In at least 50% of the IBD services across Brazil, the care of patients with IBD is performed mainly by gastroenterologists, coloproctologists, nurses, and nutritionists. In addition, the participation of a psychologist and a stoma nurse is considerable, as recommended by the IBD consensus44. Calvet X, Panés J, Alfaro N, Hinojosa J, Sicilia B, Gallego M, et al. Delphi consensus statement: Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units. J Crohns Colitis . 2014;8:240-51.,55. The IBD Standards Group. Standards for the Healthcare of People who have Inflammatory Bowel Disease (IBD). Available from: http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/PPR/ibd-standards.pdf
http://s3-eu-west-1.amazonaws.com/files....
. The topics discussed during nursing consultation follow the recommendations from the European consensus on IBD nursing1212. Kemp K, Dibley L, Chauhan U, Greveson K, Jäghult S, Ashton K, et al. Second N-ECCO Consensus Statements on the European Nursing Roles in Caring for Patients with Crohn’s Disease or Ulcerative Colitis. J Crohns Colitis . 2018;12:760-76., IBD nursing manual77. Sturm A, White L. Inflammatory Bowel Disease Nursing Manual. 1ª ed. Switzerland: Springer; 2019., and Practical Guide to IBD Nursing2929. Calleja AML, Sanz NC. Practical Nursing Guide in Inflammatory Bowel Disease. Abbvie; 2017. and address the main concerns raised by patients, such as clinical and surgical treatment, including ostomy, quality of life, diet and nutrition, and psychological and sexual impacts of the disease.

The service characteristics follow the recommendations for comprehensive care for patients with IBD, which suggest a minimum structure and procedures for a reference center in IBD, such as hospitals with emergency rooms; access to radiological and endoscopic examinations; hospitalization units; and outpatient care with availability of on-demand consultations, infusion center, prophylaxis for tuberculosis in patients using biological therapy, monitoring of patients using immunosuppressants and biological therapy, and possibility of telephone consultations44. Calvet X, Panés J, Alfaro N, Hinojosa J, Sicilia B, Gallego M, et al. Delphi consensus statement: Quality Indicators for Inflammatory Bowel Disease Comprehensive Care Units. J Crohns Colitis . 2014;8:240-51.,55. The IBD Standards Group. Standards for the Healthcare of People who have Inflammatory Bowel Disease (IBD). Available from: http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Publications/PPR/ibd-standards.pdf
http://s3-eu-west-1.amazonaws.com/files....
. The rates of telephone or electronic contacts are still low in Brazil; however, the trends point toward a gradual increase.

Regarding the educational level of the participants, a higher percentage of academic titles was observed when compared to nurses from Brazil3030. Federal Nursing Council. Nursing profile in Brazil. Final report. Brasília (DF); 2017. Available from: http://www.cofen.gov.br/perfilenfermagem/pdfs/relatoriofinal.pdf
http://www.cofen.gov.br/perfilenfermagem...
and other countries2222. Crohn’s & Colitis UK. Modelling Caseload Standards for IBD Specialist Nurses in the UK. London; 2017. Available from: http://s3-eu-west-1.amazonaws.com/files.crohnsandcolitis.org.uk/Modelling_Caseload_for_IBD_CNS_CCUK_report.pdf
http://s3-eu-west-1.amazonaws.com/files....
,2323. O’Connor M, Gaarenstroom J, Kemp K, Bager P, van der Woude CJ. N-ECCO survey results of nursing practice in caring for patients with Crohn’s disease or ulcerative colitis in Europe. J Crohns Colitis . 2014;8:1300-7.,3131. Stretton JG, Currie BK, Chauhan UK. Inflammatory bowel disease nurses in Canada: an examination of Canadian gastroenterology nurses and their role in inflammatory bowel disease care. Can J Gastroenterol Hepatol. 2014;28:89-93., showing greater academic and professional engagement of nurses involved with IBD care. The main information sources for IBD among the participants were electronic websites, followed by scientific articles, and scientific events, contrasting with other reports3232. Baird LM, Miller T. Factors influencing evidence-based practice for community nurses. Br J Community Nurs. 2015;20:233-42.,3333. Yoder LH, Kirkley D, McFall DC, Kirksey KM, StalBaum AL, Sellers D. CE: Original Research: Staff nurses’ use of research to facilitate evidence-based practice. Am J Nurs. 2014;114:26-50., which show colleagues’ opinion as the major source.

The Southeast region was the geographic region with the highest number of nurses in Brazil. It can be explained by the fact that this region is the most populous in Brazil (42.13% of the population)3434. Brazilian Institute of Geography and Statistics. Synopsis of the 2010 population census. Brasília (DF); 2011. Available from: https://biblioteca.ibge.gov.br/visualizacao/livros/liv49230.pdf
https://biblioteca.ibge.gov.br/visualiza...
; presents a higher number of nursing graduates (56.4%)3030. Federal Nursing Council. Nursing profile in Brazil. Final report. Brasília (DF); 2017. Available from: http://www.cofen.gov.br/perfilenfermagem/pdfs/relatoriofinal.pdf
http://www.cofen.gov.br/perfilenfermagem...
; concentrates a greater number of health services (37.58%)3535. Brazilian Institute of Geography and Statistics. Health Statistics. Medical and health care 2009. Brasília (DF); 2010. Available from: https://biblioteca.ibge.gov.br/visualizacao/livros/liv46754.pdf
https://biblioteca.ibge.gov.br/visualiza...
; has a higher number of job offers with a higher level requirement (51.4%)3535. Brazilian Institute of Geography and Statistics. Health Statistics. Medical and health care 2009. Brasília (DF); 2010. Available from: https://biblioteca.ibge.gov.br/visualizacao/livros/liv46754.pdf
https://biblioteca.ibge.gov.br/visualiza...
; and has a higher number of vacancies for nurses (163.099)3535. Brazilian Institute of Geography and Statistics. Health Statistics. Medical and health care 2009. Brasília (DF); 2010. Available from: https://biblioteca.ibge.gov.br/visualizacao/livros/liv46754.pdf
https://biblioteca.ibge.gov.br/visualiza...
. In addition, the Southeast region concentrates a greater number of patients with IBD (58%)3636. Brazilian Association of Ulcerative Colitis and Crohn’s Disease. Journey of the patient with Inflammatory Bowel Disease. Quantitative and qualitative study on the life of patients with inflammatory bowel disease in Brazil. São Paulo; 2017. Available from: https://abcd.org.br/wp-content/uploads/2017/12/JORNADA_DO_PACIENTE_PRINCIPAIS_RESULTADOS.pdf
https://abcd.org.br/wp-content/uploads/2...
, needing a higher number of health professionals specialized in this area. Despite the predominance of nurses from the Southeast region, the study was well represented by nurses’ participation from all Brazilian geographic regions, which can be considered a national profile of IBD nursing.

Based on the study findings, it can be supposed that IBD is a new area in nursing in Brazil; thus, there are few similar data published. Other limitations should be mentioned, such as the sample selection, which may have been intentional by the process in which nurses were identified and may have excluded some nurses working in this area. In addition, the lack of questionnaire response limited the sample size, even with the acceptable rate of response to the invitation letter (61.15%). Besides, the questionnaire was self-reported, and could be doubts regarding the veracity of the information. Despite the limitations, this research represents a pioneering survey on IBD nursing profile and analysis of health institutions where these nurses work. We found that nurses consider IBD a relevant topic, and most of them would like to learn more; thus, actions that encourage continuing education in IBD should be implemented. Initiatives promoted by the GEDIIB, such as annual courses on nursing practice in IBD, online courses, and patient guidance booklets, are essential to disseminate knowledge and nursing practices in IBD.

CONCLUSION

This study offered new information on the profile of nurses working with patients with IBD in Brazil, their work process organization, and characteristics of health services where they work. Strategies to improve professional qualification of IBD nurses are necessary, as IBD is a complex, chronic disease that requires multidisciplinary care by qualified staff. The identification of their work process organization can help upgrade nursing care in IBD, as nurses usually do not follow a specific consensus and do not base their care on the nursing process. In addition, the majority of health services do not have the necessary characteristics to offer the ideal care for patients with IBD. In view of these, it is expected to stimulate research in this area to improve evidence-based IBD nursing practices and serve as a reference for future research.

The identification of the nurses’ profile will contribute to the development of nursing care actions in Brazil.

ACKNOWLEDGEMENTS

We would like to thank the Coordination for the Improvement of Higher Education Personnel (CAPES) for the financial support and Editage for English language editing.

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  • Disclosure of funding: this study was financed in part by the Coordination of Superior Level Staff Improvement (CAPES) - Finance Code 001. Grant/Award Number: 88882.432930/2019-01. Department and Institution where the work was carried out: the work was carried out at the inflammatory bowel disease outpatient clinic of the Hospital das Clínicas, Faculdade de Medicina de Botucatu.

Publication Dates

  • Publication in this collection
    25 Sept 2023
  • Date of issue
    Jul-Sep 2023

History

  • Received
    26 Jan 2023
  • Accepted
    10 July 2023
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