Identifying and understanding the care pathway of patients with atrial fibrillation in Brazil and the impact of the COVID-19 pandemic: A mixed-methods study

Alessandra C. Goulart; Ana C. Varella; Tiffany E. Gooden; Gregory Y. H. Lip; Kate Jolly; G. Neil Thomas; Paulo A. Lotufo; Sheila Greenfield; Rodrigo D. Olmos; Isabela M. Bensenor; Semira Manaseki-Holland; NIHR Global Health Research Group on Atrial Fibrillation Management

doi:10.1371/journal.pone.0292463

Identifying and understanding the care pathway of patients with atrial fibrillation in Brazil and the impact of the COVID-19 pandemic: A mixed-methods study

Alessandra C. Goulart^*, Ana C. Varella, Tiffany E. Gooden, Gregory Y. H. Lip, Kate Jolly, G. Neil Thomas, Paulo A. Lotufo, Sheila Greenfield, Rodrigo D. Olmos, Isabela M. Bensenor, Semira Manaseki-Holland^*, NIHR Global Health Research Group on Atrial Fibrillation Management

^*Corresponding author for this work

Applied Health Sciences

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Abstract

Background: Atrial fibrillation (AF) is a major risk factor for stroke. To enable improvements to AF diagnosis and follow-up care, understanding current patient pathways and barriers to optimal care are essential. We investigated the patient care pathways and their drivers, and the impact of the COVID-19 pandemic on patient pathways in a middle-income country setting, Brazil.

Methods: This mixed-methods study in São Paulo, included adults (≥18y) with AF from 13 primary/secondary healthcare facilities. Surveys using baseline, follow-up (administered ≥two months after baseline) and COVID-19 questionnaires (quantitative), and three focus group discussions (FGDs) were conducted. Minimum sample size for the quantitative component was 236 and we aimed to reach saturation with at least three FGDs for the qualitative component. Descriptive statistics were used for quantitative data and a content analysis was used for qualitative data to identify themes related to AF diagnosis and follow-up care.

Results: 267 participants completed the baseline questionnaire: 25% were diagnosed in primary care, 65% in an emergency or inpatient department. At follow-up (n = 259), 31% visited more than one facility for AF care, and 7% had no follow-up. Intervals between international normalised ratio (INR) tests were increased during the pandemic, and the number of healthcare visits and availability of medication were reduced. Seventeen patients participated in three FGDs and revealed that AF diagnosis often occurred following a medical emergency and patients often delay care-seeking due to misconceptions about AF symptoms. Long waiting times, doctor/patient interactions and health system factors, such as doctor availability and the referral system, influence where participants visited for follow-up care.

Conclusions: Lack of public awareness and underdeveloped primary healthcare lead to delayed diagnosis, which impacts clinical outcomes and excess patient and healthcare system costs. Health system, care-provider, and pandemic factors disrupt timely and effective continuity of care.

Original language	English
Article number	e0292463
Number of pages	18
Journal	PLOS One
Volume	18
Issue number	10
DOIs	https://doi.org/10.1371/journal.pone.0292463
Publication status	Published - 12 Oct 2023

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GoulartA2023Identifying.pdfFinal published version, 1.1 MBLicence: Creative Commons: Attribution (CC BY)

NIHR Global Research Group on Atrial Fibrillation - OPEN FOR DISSEMINATION ONLY
Lasserson, D. (Co-Investigator), Manaseki-Holland, S. (Co-Investigator), Cheng, K. (Co-Investigator), Moore, D. (Co-Investigator), Jolly, K. (Co-Investigator), Greenfield, S. (Co-Investigator), Jowett, S. (Co-Investigator), Brocklehurst, P. (Co-Investigator), Nirantharakumar, K. (Co-Investigator), Szmigin, I. (Co-Investigator), Kirchhof, P. (Co-Investigator), Gough, R. (Co-Investigator) & Thomas, N. (Principal Investigator)
NIHR CENTRAL COMMISSIONING FACILITY
1/04/18 → 30/11/24
Project: Other Government Departments

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Goulart, A. C., Varella, A. C., Gooden, T. E., Lip, G. Y. H., Jolly, K., Thomas, G. N., Lotufo, P. A., Greenfield, S., Olmos, R. D., Bensenor, I. M., Manaseki-Holland, S., & NIHR Global Health Research Group on Atrial Fibrillation Management (2023). Identifying and understanding the care pathway of patients with atrial fibrillation in Brazil and the impact of the COVID-19 pandemic: A mixed-methods study. PLOS One, 18(10), Article e0292463. https://doi.org/10.1371/journal.pone.0292463

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title = "Identifying and understanding the care pathway of patients with atrial fibrillation in Brazil and the impact of the COVID-19 pandemic: A mixed-methods study",

abstract = "Background: Atrial fibrillation (AF) is a major risk factor for stroke. To enable improvements to AF diagnosis and follow-up care, understanding current patient pathways and barriers to optimal care are essential. We investigated the patient care pathways and their drivers, and the impact of the COVID-19 pandemic on patient pathways in a middle-income country setting, Brazil. Methods: This mixed-methods study in S{\~a}o Paulo, included adults (≥18y) with AF from 13 primary/secondary healthcare facilities. Surveys using baseline, follow-up (administered ≥two months after baseline) and COVID-19 questionnaires (quantitative), and three focus group discussions (FGDs) were conducted. Minimum sample size for the quantitative component was 236 and we aimed to reach saturation with at least three FGDs for the qualitative component. Descriptive statistics were used for quantitative data and a content analysis was used for qualitative data to identify themes related to AF diagnosis and follow-up care. Results: 267 participants completed the baseline questionnaire: 25% were diagnosed in primary care, 65% in an emergency or inpatient department. At follow-up (n = 259), 31% visited more than one facility for AF care, and 7% had no follow-up. Intervals between international normalised ratio (INR) tests were increased during the pandemic, and the number of healthcare visits and availability of medication were reduced. Seventeen patients participated in three FGDs and revealed that AF diagnosis often occurred following a medical emergency and patients often delay care-seeking due to misconceptions about AF symptoms. Long waiting times, doctor/patient interactions and health system factors, such as doctor availability and the referral system, influence where participants visited for follow-up care. Conclusions: Lack of public awareness and underdeveloped primary healthcare lead to delayed diagnosis, which impacts clinical outcomes and excess patient and healthcare system costs. Health system, care-provider, and pandemic factors disrupt timely and effective continuity of care.",

author = "Goulart, {Alessandra C.} and Varella, {Ana C.} and Gooden, {Tiffany E.} and Lip, {Gregory Y. H.} and Kate Jolly and Thomas, {G. Neil} and Lotufo, {Paulo A.} and Sheila Greenfield and Olmos, {Rodrigo D.} and Bensenor, {Isabela M.} and Semira Manaseki-Holland and {NIHR Global Health Research Group on Atrial Fibrillation Management}",

year = "2023",

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doi = "10.1371/journal.pone.0292463",

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Goulart, AC, Varella, AC, Gooden, TE , Lip, GYH , Jolly, K , Thomas, GN, Lotufo, PA, Greenfield, S, Olmos, RD, Bensenor, IM, Manaseki-Holland, S & NIHR Global Health Research Group on Atrial Fibrillation Management 2023, 'Identifying and understanding the care pathway of patients with atrial fibrillation in Brazil and the impact of the COVID-19 pandemic: A mixed-methods study', PLOS One, vol. 18, no. 10, e0292463. https://doi.org/10.1371/journal.pone.0292463

TY - JOUR

T1 - Identifying and understanding the care pathway of patients with atrial fibrillation in Brazil and the impact of the COVID-19 pandemic

T2 - A mixed-methods study

AU - Goulart, Alessandra C.

AU - Varella, Ana C.

AU - Gooden, Tiffany E.

AU - Lip, Gregory Y. H.

AU - Jolly, Kate

AU - Thomas, G. Neil

AU - Lotufo, Paulo A.

AU - Greenfield, Sheila

AU - Olmos, Rodrigo D.

AU - Bensenor, Isabela M.

AU - Manaseki-Holland, Semira

AU - NIHR Global Health Research Group on Atrial Fibrillation Management

PY - 2023/10/12

Y1 - 2023/10/12

N2 - Background: Atrial fibrillation (AF) is a major risk factor for stroke. To enable improvements to AF diagnosis and follow-up care, understanding current patient pathways and barriers to optimal care are essential. We investigated the patient care pathways and their drivers, and the impact of the COVID-19 pandemic on patient pathways in a middle-income country setting, Brazil. Methods: This mixed-methods study in São Paulo, included adults (≥18y) with AF from 13 primary/secondary healthcare facilities. Surveys using baseline, follow-up (administered ≥two months after baseline) and COVID-19 questionnaires (quantitative), and three focus group discussions (FGDs) were conducted. Minimum sample size for the quantitative component was 236 and we aimed to reach saturation with at least three FGDs for the qualitative component. Descriptive statistics were used for quantitative data and a content analysis was used for qualitative data to identify themes related to AF diagnosis and follow-up care. Results: 267 participants completed the baseline questionnaire: 25% were diagnosed in primary care, 65% in an emergency or inpatient department. At follow-up (n = 259), 31% visited more than one facility for AF care, and 7% had no follow-up. Intervals between international normalised ratio (INR) tests were increased during the pandemic, and the number of healthcare visits and availability of medication were reduced. Seventeen patients participated in three FGDs and revealed that AF diagnosis often occurred following a medical emergency and patients often delay care-seeking due to misconceptions about AF symptoms. Long waiting times, doctor/patient interactions and health system factors, such as doctor availability and the referral system, influence where participants visited for follow-up care. Conclusions: Lack of public awareness and underdeveloped primary healthcare lead to delayed diagnosis, which impacts clinical outcomes and excess patient and healthcare system costs. Health system, care-provider, and pandemic factors disrupt timely and effective continuity of care.

AB - Background: Atrial fibrillation (AF) is a major risk factor for stroke. To enable improvements to AF diagnosis and follow-up care, understanding current patient pathways and barriers to optimal care are essential. We investigated the patient care pathways and their drivers, and the impact of the COVID-19 pandemic on patient pathways in a middle-income country setting, Brazil. Methods: This mixed-methods study in São Paulo, included adults (≥18y) with AF from 13 primary/secondary healthcare facilities. Surveys using baseline, follow-up (administered ≥two months after baseline) and COVID-19 questionnaires (quantitative), and three focus group discussions (FGDs) were conducted. Minimum sample size for the quantitative component was 236 and we aimed to reach saturation with at least three FGDs for the qualitative component. Descriptive statistics were used for quantitative data and a content analysis was used for qualitative data to identify themes related to AF diagnosis and follow-up care. Results: 267 participants completed the baseline questionnaire: 25% were diagnosed in primary care, 65% in an emergency or inpatient department. At follow-up (n = 259), 31% visited more than one facility for AF care, and 7% had no follow-up. Intervals between international normalised ratio (INR) tests were increased during the pandemic, and the number of healthcare visits and availability of medication were reduced. Seventeen patients participated in three FGDs and revealed that AF diagnosis often occurred following a medical emergency and patients often delay care-seeking due to misconceptions about AF symptoms. Long waiting times, doctor/patient interactions and health system factors, such as doctor availability and the referral system, influence where participants visited for follow-up care. Conclusions: Lack of public awareness and underdeveloped primary healthcare lead to delayed diagnosis, which impacts clinical outcomes and excess patient and healthcare system costs. Health system, care-provider, and pandemic factors disrupt timely and effective continuity of care.

U2 - 10.1371/journal.pone.0292463

DO - 10.1371/journal.pone.0292463

M3 - Article

C2 - 37824516

SN - 1932-6203

VL - 18

JO - PLOS One

JF - PLOS One

IS - 10

M1 - e0292463

ER -

Identifying and understanding the care pathway of patients with atrial fibrillation in Brazil and the impact of the COVID-19 pandemic: A mixed-methods study

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