Patient care in cystic fibrosis centers: a real-world analysis in Brazil
ABSTRACT Objective: To analyze the characteristics of cystic fibrosis (CF) care centers (CFCCs) in Brazil. Methods: A questionnaire was sent to the coordinators of all 51 registered CFCCs between May and September of 2021. Results: The response rate was 100%. Southeastern Brazil is the region whe...
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| Format: | Article |
| Language: | English |
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Sociedade Brasileira de Pneumologia e Tisiologia
2023-02-01
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| Series: | Jornal Brasileiro de Pneumologia |
| Subjects: | |
| Online Access: | http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1806-37132023000100206&lng=en&tlng=en |
| _version_ | 1811170369562738688 |
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| author | Elenara da Fonseca Andrade Procianoy Norberto Ludwig Neto Antônio Fernando Ribeiro |
| author_facet | Elenara da Fonseca Andrade Procianoy Norberto Ludwig Neto Antônio Fernando Ribeiro |
| author_sort | Elenara da Fonseca Andrade Procianoy |
| collection | DOAJ |
| description | ABSTRACT Objective: To analyze the characteristics of cystic fibrosis (CF) care centers (CFCCs) in Brazil. Methods: A questionnaire was sent to the coordinators of all 51 registered CFCCs between May and September of 2021. Results: The response rate was 100%. Southeastern Brazil is the region where most of the CFCCs in the country are located (21 centers; 41%), followed by the southern and northeastern regions (11 centers each; 21.5%), the central-western region (6; 12%), and the northern region (2; 4%). A total of 4,371 patients with CF were cared for in Brazil during the study period, ranging from 7 to 240 patients per center (mean, 86 patients/center; median, 75 patients/center); 2,197 patients (50%) were cared for in centers in the southeastern region of the country, particularly in the state of São Paulo (33%), the remaining patients being treated in southern Brazil (1,014 patients, 23%), northeastern Brazil (665 patients, 15%), central-western Brazil (354 patients, 8%), and northern Brazil (141 patients, 4%). Overall, 47 centers (92%) reported having an incomplete multidisciplinary team; 4 (8%) lacked essential team members; 6 (12%) lacked a physical therapist; 5 (10%) lacked a dietitian; 17 (33%) lacked outpatient nursing care; 13 (25%) lacked outpatient social work services; 14 (27%) lacked a psychologist; and 32 (63%) lacked a clinical pharmacist. Seven CFCCs (14%) in the northern and northeastern regions of Brazil reported that the quality of newborn screening for CF was poor. All centers reported having difficulties in accessing CF medications. Conclusions: Brazilian CFCCs experience multiple problems, including inadequate staffing, infrastructure, testing, and medication supply. There is an urgent need to regulate the implementation of CF referral centers and an appropriate network structure for the diagnosis and follow-up of CF patients using optimal treatment recommendations. |
| first_indexed | 2024-04-10T16:56:50Z |
| format | Article |
| id | doaj.art-d96b38ec61834b9e9cc3a6a46ed92a3b |
| institution | Directory Open Access Journal |
| issn | 1806-3756 |
| language | English |
| last_indexed | 2024-04-10T16:56:50Z |
| publishDate | 2023-02-01 |
| publisher | Sociedade Brasileira de Pneumologia e Tisiologia |
| record_format | Article |
| series | Jornal Brasileiro de Pneumologia |
| spelling | doaj.art-d96b38ec61834b9e9cc3a6a46ed92a3b2023-02-07T07:32:42ZengSociedade Brasileira de Pneumologia e TisiologiaJornal Brasileiro de Pneumologia1806-37562023-02-0149110.36416/1806-3756/e20220306Patient care in cystic fibrosis centers: a real-world analysis in BrazilElenara da Fonseca Andrade Procianoyhttps://orcid.org/0000-0002-4341-7223Norberto Ludwig Netohttps://orcid.org/0000-0002-5897-273XAntônio Fernando Ribeirohttps://orcid.org/0000-0003-0373-9890ABSTRACT Objective: To analyze the characteristics of cystic fibrosis (CF) care centers (CFCCs) in Brazil. Methods: A questionnaire was sent to the coordinators of all 51 registered CFCCs between May and September of 2021. Results: The response rate was 100%. Southeastern Brazil is the region where most of the CFCCs in the country are located (21 centers; 41%), followed by the southern and northeastern regions (11 centers each; 21.5%), the central-western region (6; 12%), and the northern region (2; 4%). A total of 4,371 patients with CF were cared for in Brazil during the study period, ranging from 7 to 240 patients per center (mean, 86 patients/center; median, 75 patients/center); 2,197 patients (50%) were cared for in centers in the southeastern region of the country, particularly in the state of São Paulo (33%), the remaining patients being treated in southern Brazil (1,014 patients, 23%), northeastern Brazil (665 patients, 15%), central-western Brazil (354 patients, 8%), and northern Brazil (141 patients, 4%). Overall, 47 centers (92%) reported having an incomplete multidisciplinary team; 4 (8%) lacked essential team members; 6 (12%) lacked a physical therapist; 5 (10%) lacked a dietitian; 17 (33%) lacked outpatient nursing care; 13 (25%) lacked outpatient social work services; 14 (27%) lacked a psychologist; and 32 (63%) lacked a clinical pharmacist. Seven CFCCs (14%) in the northern and northeastern regions of Brazil reported that the quality of newborn screening for CF was poor. All centers reported having difficulties in accessing CF medications. Conclusions: Brazilian CFCCs experience multiple problems, including inadequate staffing, infrastructure, testing, and medication supply. There is an urgent need to regulate the implementation of CF referral centers and an appropriate network structure for the diagnosis and follow-up of CF patients using optimal treatment recommendations.http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1806-37132023000100206&lng=en&tlng=enCystic fibrosisNeonatal screeningQuality of lifeGenetic diseases, inbornLung diseases |
| spellingShingle | Elenara da Fonseca Andrade Procianoy Norberto Ludwig Neto Antônio Fernando Ribeiro Patient care in cystic fibrosis centers: a real-world analysis in Brazil Jornal Brasileiro de Pneumologia Cystic fibrosis Neonatal screening Quality of life Genetic diseases, inborn Lung diseases |
| title | Patient care in cystic fibrosis centers: a real-world analysis in Brazil |
| title_full | Patient care in cystic fibrosis centers: a real-world analysis in Brazil |
| title_fullStr | Patient care in cystic fibrosis centers: a real-world analysis in Brazil |
| title_full_unstemmed | Patient care in cystic fibrosis centers: a real-world analysis in Brazil |
| title_short | Patient care in cystic fibrosis centers: a real-world analysis in Brazil |
| title_sort | patient care in cystic fibrosis centers a real world analysis in brazil |
| topic | Cystic fibrosis Neonatal screening Quality of life Genetic diseases, inborn Lung diseases |
| url | http://www.scielo.br/scielo.php?script=sci_arttext&pid=S1806-37132023000100206&lng=en&tlng=en |
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