STRUCTURAL EVALUATION OF INFLAMMATORY BOWEL DISEASE COMPREHENSIVE CARE UNITS IN BRAZIL

QUARESMA, Abel Botelho; GUEDES, Ludmila Resende; BARROS, Jaqueline Ribeiro de; BAIMA, Júlio Pinheiro; IMBRIZI, Marcello; ZERÔNCIO, Marco Antônio; KOTZE, Paulo Gustavo; FLORES, Cristina; ,

doi:10.1590/S0004-2803.24612023-166

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ORIGINAL ARTICLE/INFLAMMATORY DISEASE • Arq. Gastroenterol. 61 • 2024 • https://doi.org/10.1590/S0004-2803.24612023-166 copy

STRUCTURAL EVALUATION OF INFLAMMATORY BOWEL DISEASE COMPREHENSIVE CARE UNITS IN BRAZIL

Avaliação estrutural das unidades de atenção integral às doenças inflamatórias intestinais no Brasil

Authorship SCIMAGO INSTITUTIONS RANKINGS

ABSTRACT

Background:

The most efficient way to prevent complications from inflammatory bowel disease (IBD) is to provide patients with optimized care. Nonetheless, in Brazil, there is no validated methodology for evaluating health services recognized as comprehensive care units (CCU), making it difficult to assess the quality of care provided.

Objective:

To understand the current scenario, map the distribution of centers and identify strengths and weaknesses, considering local and regional characteristics.

Methods:

The study was carried out in three phases. Initially, the Brazilian Organization for Crohn’s disease and colitis (GEDIIB) developed 22 questions to characterize CCU in Brazil. In the second phase, all GEDIIB members were invited to respond to the survey with the 11 questions considered most relevant. In the last phase, an interim analysis of the results was performed, using the IBM SPSS Statistics v 29.0.1.0 software. Descriptive statistics were used to characterize the center’s profile. The chi-square test was used to compare categorical variables.

Results:

There were 53 responses from public centers (11 excluded). Most centers were concentrated in the Southeastern (n=22/52.4%) and only 1 (2.4%) in the Northern region of Brazil. Thirty-nine centers (92.9%) perform endoscopic procedures, but only 9 (21.4%) have access to enteroscopy and/or small bowel capsule endoscopy. Thirty-three centers (78.6%) offer infusion therapy locally, 26 (61.9%) maintain IBD patient records, 13 (31.0%) reported having an IBD nurse, 34 (81.0%) have specific evidence-based protocols and only 7 (16.7%) have a patient satisfaction methodology. In the private scenario there were 56 responses (10 excluded). There is also a concentration in the Southeastern and Southern regions. Thirty-nine centers (84.8%) have access to endoscopic procedures and 19 perform enteroscopy and/or small bowel capsule endoscopy, more than what is observed in the public environment. Infusion therapy is available in 24 centers (52.2%). Thirty-nine centers (84.8%) maintain a specific IBD patient database, 17 (37%) have an IBD nurse, 36 (78.3%) have specific evidence-based protocols, and 22 (47. 8%) apply a patient satisfaction methodology.

Conclusion:

IBD CCU in Brazil were mainly located in the Southeastern and Southern regions of the country. Most centers have dedicated multidisciplinary teams and IBD specialists. There is still a current need to improve the proportion of IBD nurses in IBD care in Brazil.

Keywords:
Crohn disease; ulcerative colitis; health care; health facility accreditation; outcome and process assessment

HIGHLIGHTS

•In Brazil, there is no validated methodology for evaluating health services recognized as comprehensive care units (CCU), making it difficult to assess the quality of care provided.

•Most CCU were concentrated in the Southeast region and only one (2.4%) in the Northeast region of Brazil. This pattern follows the epidemiological trends of IBD in the country.

•There is still difficulty in accessing enteroscopy and/or small bowel capsule endoscopy in the public health system.

•Most centers have dedicated multidisciplinary teams and IBD specialist doctors.

•There is still a current need to improve the proportion of nurses treating IBD in Brazil.

Calvet et al	ECCO	PANCCO and GETECCU	Chen and Shen
Hospital characteristics	1. An IBD unit provides an interdisciplinary approach to the patient	1. The Center of Excellence	1. IBD center should have a fixed MDT that includes gastroenterologists and surgeons, radiologists, pathologist, pharmacist, psychologist, obstetricians and gynecologist, and pediatrician to handle special cases. The team holds multidisciplinary case discussion regularly at least twice a month.
1. The Inflammatory Bowel Disease Comprehensive Care Units (ICCU) should have a dedicated outpatient clinic with nurse care.	2. A structured interdisciplinary team for IBD has:	(COE) must have installations for outpatient care, at which drugs can be intravenously administered.	2. IBD center has a fixed clinical dietitian.
2. The ICCU should have outpatient facilities where drugs can be administered intravenously.	- an identified specialist	2. The COE must be affiliated with a hospital that has an emergency service.	3. IBD center should have specialized nurses.
3. The ICCU should be integrated in a hospital with an Emergency Department.	- an identified nurse	3. The COE must be affiliated with a gastroenterology department that has hospitalization installations.	4. Specialized outpatient unit is necessary in IBD center.
4. The ICCU should be integrated in a Digestive Disease Department that has hospitalization facilities.	- an identified surgeon and clear referral pathway for complex IBD surgery such as ileoanal pouch	4. The COE must be affiliated with a hospital with a gastrointestinal endoscopy service.	5. IBD centers require a relatively fixed and reasonable number of hospital beds or specialized wards for IBD patients.
5. The ICCU should be integrated in a hospital with an Endoscopy Unit. Specific ICCU facilities	- an identified pathologist	5. The COE must provide specialized outpatient consultation for patients with IBD.	6. All centers should have an electronic database.
6. There should be outpatient specialized clinics for IBD patients.	- an identified radiologist	6. The COE must have at least one nurse that is specialized in IBD.	7. In these evaluation centers, standard operating procedure (SOP), including standardized screening, biological agent infusion process is necessary.
7. The ICCU should have a telephone service for patient consultation.	- an identified dietician/nutritionist or a clear pathway for referral	7. The COE must have a colorectal surgeon or a surgical team with experience in the surgical treatment of patients with IBD.	8. Capsule endoscopy and enteroscopy should be the regular routine examination items.
Registers	- an identified stoma management specialist or a clear pathway for referral an identified endoscopist	8. The COE must include a radiologist with experience in IBD.
8. The ICCU should have a registry of all the IBD patients.	- an identified psychologist or a clear pathway for referral	9. The COE must have access to computed tomography (CT) imaging.
9. The ICCU should have a registry of IBD patients receiving biological drugs.	- a link to a pharmacist or a health care	10. The COE must have access to MRE and pelvic magnetic resonance imaging (MRI).
Personnel	3. At least one member of the multidisciplinary team provides patient education, counselling, emotional support, liaison, and continuity	11. The COE must have access to a diagnostic and therapeutic endoscopy unit with expertise in IBD.
10. The ICCU should have at least one IBD specialized nurse.	4. An IBD unit provides access to other ap- propriate medical specialties [e.g., rheumatologists, dermatologists, infectious disease specialists] to manage specific situations related to IBD in a timely manner
	5. An IBD unit has a named lead for the service
	6. An IBD unit develops and updates in-house departmental guidelines
	7. An IBD unit develops and updates quality indicators
	8. An IBD unit provides a contact line for the patient
	9. An IBD unit has outpatient facilities where

Public Centers			Private Centers
Region	Frequency	%	Region	Frequency	%
Midwest	5	11.9	Midwest	5	10.9
North	1	24	North	0	0
Northeast	9	21.4	Northeast	7	15.2
South	5	11.9	South	8	17.4
Southeast	22	52.4	Southeast	26	56.5
Total	42	100	Total	46	100

Public center city	Public centers	State	Private center city	Private centers	State
Belo Horizonte	2	MG	Avaré	1	SP
Botucatu	1	SP	Barretos	1	SP
Brasília	2	DF	Belo Horizonte	3	MG
Campinas	1	SP	Blumenau	1	SC
Cascavel	1	PR	Botucatu	1	SP
Cuiabá	1	MT	Brasília	1	DF
Curitiba	1	PR	Campina Grande	1	PB
Dourados	1	MS	Campinas	1	SP
Fortaleza	1	CE	Campo Grande	1	MS
Gama	1	DF	Canoas	1	RS
Guarulhos	1	SP	Cascavel	1	PR
Itajaí	1	SC	Curitiba	1	PR
João Pessoa	1	PB	Divinópolis	1	MG
Juiz de Fora	1	MG	Goiânia	2	GO
Maceió	1	AL	Ipatinga	1	MG
Manaus	1	AM	Joaçaba	1	SC
Natal	1	RN	Juazeiro do Norte	2	CE
Niterói	1	RJ	Macaé	1	RJ
Passo Fundo	1	RS	Marília	1	SP
Porto Alegre	1	RS	Mossoró	1	RN
Recife	1	PE	Natal	1	RN
Rio de Janeiro	4	RJ	Niterói	1	RJ
Salvador	1	BA	Porto Alegre	3	RS
Santos	1	SP	Rio de Janeiro	3	RJ
São José do Rio Preto	1	SP	Salvador	1	BA
São Paulo	4	SP	Santo André	1	SP
Aracajú	1	SE	Santos	2	SP
Serra	1	ES	São Carlos	1	SP
Teresina	2	PI	São Paulo	4	SP
Uberlândia	2	MG	Sinop	1	MT
Vitória	2	ES	Teresina	1	PI
			Três Rios	1	RJ
			Vitória	1	ES
			Volta Redonda	1	RJ
Total	42		Total	46

	Public (n=42)	Private (n=46)	P
Multidisciplinary team	42	37	0.002
Surgeon with IBD experience	33	39	0.451
Telemedicine	13	25	0.027
Easy access if flare	40	41	0.29
Emergency service	25	25	0.624
Hospitalized care with IBD specialist	36	34	0.17
Endoscopy	39	38	0.147
Colonoscopy	38	39	0.42
Enteroscopy	5	9	0.326
Small bowel capsule endoscopy	4	19	<0.001
Therapeutic endoscopist	33	39	0.451
Enterography (CT or MRI)	34	41	0.28
Radiologist with IBD experience	30	35	0.619
Infusion center	33	24	0.01
IBD patient’s registry	26	39	0.015
Experienced IBD Nurse	13	17	0.553
Evidence-based protocols	34	36	0.755
Patient’s satisfaction methodology	7	22	0.002

	Standard A*	Standard B*	Standard C*
T E A M	MTDs consisting of all members in the same institution (gastroenterologist, surgeon, endoscopist, pathologist, radiologist, nurse, nutritionist, psychologist, rheumatologist, ophthalmologist, dermatologist, OG, social worker and pharmacist), all with experience in IBD. Regular multidisciplinary meeting to discuss cases (minimum monthly). Participation of the MTDs in IBD research.	MTDs**: gastroenterologist, surgeon, endoscopist, nurse, nutritionist with experience in IBD working in the same institution. Referenced professionals with experience in IBD: pathologist, radiologist, psychologist, rheumatologist, ophthalmologist, OG, dermatologist, social worker and pharmacist. Monthly multidisciplinary meeting to discuss cases.	MTDs**: gastroenterologist, surgeon, endoscopist, pathologist, radiologist, nurse, nutritionist, psychologist, rheumatologist, ophthalmologist, dermatologist, OG, social worker, and pharmacist, preferably with experience in IBD, referenced outside the institution.
S T R U C T U R E	Specific clinic for IBD. Diagnostic and therapeutic digestive endoscopy service with double-balloon and/or small bowel capsule endoscopy. Radiology service with CT/MR enterography. Infusion Center. Access to emergency care at the institution. Appropriate structure to deal with cases of severe acute colitis. Specific registry of patients with IBD. Specific record for biological medication. Open appointment for suspected reactivation and possible cases of hospitalization. Active participation of the responsible specialist in decisions during hospitalization. Ease of contact for problems related to treatment. Designation of a specialist doctor for each patient. Self-assessment system and information material for the patient.	Specific Clinic or Outpatient Clinic for IBD. Diagnostic and therapeutic digestive endoscopy service; enteroscopy and/or capsule not mandatory. Radiology service with CT/MR enterography. Infusion of biologicals in the institution according to protocols. Specific record of patients with IBD and for biologicals. Open access for suspected flares. Access to emergency care. Ease of contact for problems related to treatment. Appointment of a responsible specialist physician for each patient in the unit. Information material for the patient.	Clinic or outpatient clinic referred for IBD. Diagnostic and therapeutic digestive endoscopy service referred outside the institution. Radiology service with CT/MR enterography outside the institution. Specific record of patients with IBD. Specific record for biological medication. Appointment of open consultation for suspected flares. Ease of contact for treatment problems. Information material for the patient.
S U R G E R Y	Specific registry for surgical patients. Inpatient service with specialized IBD surgeons. Elective surgeries performed only by staff surgeons. Pre-surgical care with stoma care nurses. Ileal pouch performed only by trained and experienced surgeons. Documentation of pre-surgical risk and benefit guidelines (informed consent).	External access to inpatient service with specialized surgery for IBD	External access to inpatient service with specialized surgery for IBD
P R O T O C O L S	Use of updated protocols or adherence to international diagnostic and treatment guidelines. Use of drug protocols (preparation for immunosuppression and appropriate clinical monitoring for each therapy). Use of a specific protocol for patients treated at the institution’s emergency room. Treatment protocols in pregnancy/lactation. Colorectal cancer prevention program in accordance with international guidelines. Antithrombotic therapy for all inpatients with IBD. Medication consent for patients taking medication.	Use of updated protocols or adherence to international diagnostic and treatment guidelines. Use of drug protocols (preparation for immunosuppression and appropriate clinical monitoring for each therapy). Use of a specific protocol for patients treated at the institution’s emergency room. Treatment protocols in pregnancy/lactation. Colorectal cancer prevention program in accordance with international guidelines. Antithrombotic therapy for all inpatients with IBD. Medication consent for patients taking medication.	Use of updated protocols or adherence to international diagnostic and treatment guidelines. Use of drug protocols (preparation for immunosuppression and appropriate clinical monitoring for each therapy). Use of a specific protocol for patients treated at the institution’s emergency room. Treatment protocols in pregnancy/lactation. Colorectal cancer prevention program in accordance with international guidelines. Antithrombotic therapy for all inpatients with IBD. Medication consent for patients taking medication.

Instituto Brasileiro de Estudos e Pesquisas de Gastroenterologia e Outras Especialidades - IBEPEGE. Rua Dr. Seng, 320, 01331-020 São Paulo - SP Brasil, Tel./Fax: +55 11 3147-6227 - São Paulo - SP - Brazil
E-mail: secretariaarqgastr@hospitaligesp.com.br

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[1] Corresponding author: Abel Botelho Quaresma. E-mail: abel@proctoclinic.com.br

1	Public or private health?
2	Localization and name of the center
3	Ambulatory care only, hospitalized patient or both
4	Multidisciplinary team at the center or referral
5	Nutritionist, nurse, psychologist
6	Ophthalmologist, rheumatologist, digestive surgeon, proctologist, radiologist, gastroenterologist, endoscopist, psychiatrist, pathologist, dermatologist, nutrologist
7	Surgeon with IBD experience
8	Scientific meetings and frequency
9	Fellows in IBD
10	Telemedicine
11	Easy access if flare
12	Emergency service
13	Hospitalized care with IBD specialist
14	Endoscopic exams and interventions
15	Endoscopy, colonoscopy, enteroscopy
16	Endoscopic dilatation
17	Radiologic exams
18	Computed tomography enterography and magnetic resonance enterography
19	Radiologist with experience in IBD
20	Infusion center for intravenous and subcutaneous drugs
21	IBD patient’s registry
22	IBD specialized nurse
23	Evidence based protocols
24	Patient’s satisfaction methodology