COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients

Patients with alpha-1 antitrypsin deficiency (AATD), commonly categorized as a rare disease, have been affected by the changes in healthcare management brought about by COVID-19. This study's aim was to identify the changes that have taken place in AATD patient care as a result of the COVID-19...

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Autores: Calle Rubio, Myriam|||0000-0002-3890-2742, López Campos, José Luis|||0000-0003-1703-1367, Miravitlles, Marc|||0000-0002-9850-9520, Michel de la Rosa, Francisco Javier, Hernández Pérez, José María, Montero Martínez, Carmen, Montoro Ronsano, José Bruno, Casas-Maldonado, Francisco, Rodriguez Hermosa, Juan Luis|||0000-0003-0552-2484, Tabernero Huguet, Eva María, Martínez Sesmero, José Manuel, Martínez Rivera, Carlos|||0000-0003-1031-2561, Callejas González, Francisco Javier, Torres Durán, María
Tipo de recurso: artículo
Fecha de publicación:2023
País:España
Institución:Universitat Autònoma de Barcelona
Repositorio:Dipòsit Digital de Documents de la UAB
Idioma:inglés
OAI Identifier:oai:ddd.uab.cat:271595
Acceso en línea:https://ddd.uab.cat/record/271595
https://dx.doi.org/urn:doi:10.1186/s12913-023-09094-3
Access Level:acceso abierto
Palabra clave:COVID-19
Alpha-1-antitrypsin deficiency
Recommendations
Patient management
Healthcare system
Rare disease
Diagnostic
Treatment
Follow-up
AATD
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spelling COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patientsCalle Rubio, Myriam|||0000-0002-3890-2742López Campos, José Luis|||0000-0003-1703-1367Miravitlles, Marc|||0000-0002-9850-9520Michel de la Rosa, Francisco JavierHernández Pérez, José MaríaMontero Martínez, CarmenMontoro Ronsano, José BrunoCasas-Maldonado, FranciscoRodriguez Hermosa, Juan Luis|||0000-0003-0552-2484Tabernero Huguet, Eva MaríaMartínez Sesmero, José ManuelMartínez Rivera, Carlos|||0000-0003-1031-2561Callejas González, Francisco JavierTorres Durán, MaríaCOVID-19Alpha-1-antitrypsin deficiencyRecommendationsPatient managementHealthcare systemRare diseaseDiagnosticTreatmentFollow-upAATDPatients with alpha-1 antitrypsin deficiency (AATD), commonly categorized as a rare disease, have been affected by the changes in healthcare management brought about by COVID-19. This study's aim was to identify the changes that have taken place in AATD patient care as a result of the COVID-19 pandemic in Spain and to propose experts' recommendations aimed at ensuring humanized and quality care for people with AATD in the post-pandemic situation. A qualitative descriptive case study with a holistic single-case design was conducted, using focus groups with experts in AATD clinical management, including 15 health professionals with ties to the Spanish health system (12 pneumologists and 2 hospital pharmacists from 11 different hospitals in Spain) and 1 patient representative. COVID-19 has had a major impact on numerous aspects of AATD clinical patient management in Spain, including diagnostic, treatment, and follow-up phases. The experts concluded that there is a need to strengthen coordination between Primary Care and Hospital Care and improve the coordination processes across all the organizations and actors involved in the healthcare system. Regarding telemedicine and telecare, experts have concluded that it is necessary to promote this methodology and to develop protocols and training programs. Experts have recommended developing personalized and precision medicine, and patient participation in decision-making, promoting self-care and patient autonomy to optimize their healthcare and improve their quality of life. The possibility of monitoring and treating AATD patients from home has also been proposed by experts. Another result of the study was the recommendation of the need to ensure that plasma donations are made on a regular basis by a sufficient number of healthy individuals. The study advances knowledge by highlighting the challenges faced by health professionals and changes in AATD patient management in the context of the COVID-19 pandemic. It also proposes experts' recommendations aimed at ensuring humanized and quality care for people with AATD in the post-pandemic situation. This work could serve as a reference study for physicians on their daily clinical practice with AATD patients and may also provide guidance on the changes to be put in place for the post-pandemic situation.Universitat Autònoma de Barcelona 22023-01-0120232023-01-01Articlehttp://purl.org/coar/resource_type/c_6501VoRhttp://purl.org/coar/version/c_970fb48d4fbd8a85info:eu-repo/semantics/articleapplication/pdfhttps://ddd.uab.cat/record/271595https://dx.doi.org/urn:doi:10.1186/s12913-023-09094-3reponame:Dipòsit Digital de Documents de la UABinstname:Universitat Autònoma de BarcelonaInglésengopen accesshttp://purl.org/coar/access_right/c_abf2Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.https://creativecommons.org/licenses/by/4.0/info:eu-repo/semantics/openAccessoai:ddd.uab.cat:2715952026-06-06T12:50:31Z
dc.title.none.fl_str_mv COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
title COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
spellingShingle COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
Calle Rubio, Myriam|||0000-0002-3890-2742
COVID-19
Alpha-1-antitrypsin deficiency
Recommendations
Patient management
Healthcare system
Rare disease
Diagnostic
Treatment
Follow-up
AATD
title_short COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
title_full COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
title_fullStr COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
title_full_unstemmed COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
title_sort COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
dc.creator.none.fl_str_mv Calle Rubio, Myriam|||0000-0002-3890-2742
López Campos, José Luis|||0000-0003-1703-1367
Miravitlles, Marc|||0000-0002-9850-9520
Michel de la Rosa, Francisco Javier
Hernández Pérez, José María
Montero Martínez, Carmen
Montoro Ronsano, José Bruno
Casas-Maldonado, Francisco
Rodriguez Hermosa, Juan Luis|||0000-0003-0552-2484
Tabernero Huguet, Eva María
Martínez Sesmero, José Manuel
Martínez Rivera, Carlos|||0000-0003-1031-2561
Callejas González, Francisco Javier
Torres Durán, María
author Calle Rubio, Myriam|||0000-0002-3890-2742
author_facet Calle Rubio, Myriam|||0000-0002-3890-2742
López Campos, José Luis|||0000-0003-1703-1367
Miravitlles, Marc|||0000-0002-9850-9520
Michel de la Rosa, Francisco Javier
Hernández Pérez, José María
Montero Martínez, Carmen
Montoro Ronsano, José Bruno
Casas-Maldonado, Francisco
Rodriguez Hermosa, Juan Luis|||0000-0003-0552-2484
Tabernero Huguet, Eva María
Martínez Sesmero, José Manuel
Martínez Rivera, Carlos|||0000-0003-1031-2561
Callejas González, Francisco Javier
Torres Durán, María
author_role author
author2 López Campos, José Luis|||0000-0003-1703-1367
Miravitlles, Marc|||0000-0002-9850-9520
Michel de la Rosa, Francisco Javier
Hernández Pérez, José María
Montero Martínez, Carmen
Montoro Ronsano, José Bruno
Casas-Maldonado, Francisco
Rodriguez Hermosa, Juan Luis|||0000-0003-0552-2484
Tabernero Huguet, Eva María
Martínez Sesmero, José Manuel
Martínez Rivera, Carlos|||0000-0003-1031-2561
Callejas González, Francisco Javier
Torres Durán, María
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Universitat Autònoma de Barcelona
dc.subject.none.fl_str_mv COVID-19
Alpha-1-antitrypsin deficiency
Recommendations
Patient management
Healthcare system
Rare disease
Diagnostic
Treatment
Follow-up
AATD
topic COVID-19
Alpha-1-antitrypsin deficiency
Recommendations
Patient management
Healthcare system
Rare disease
Diagnostic
Treatment
Follow-up
AATD
description Patients with alpha-1 antitrypsin deficiency (AATD), commonly categorized as a rare disease, have been affected by the changes in healthcare management brought about by COVID-19. This study's aim was to identify the changes that have taken place in AATD patient care as a result of the COVID-19 pandemic in Spain and to propose experts' recommendations aimed at ensuring humanized and quality care for people with AATD in the post-pandemic situation. A qualitative descriptive case study with a holistic single-case design was conducted, using focus groups with experts in AATD clinical management, including 15 health professionals with ties to the Spanish health system (12 pneumologists and 2 hospital pharmacists from 11 different hospitals in Spain) and 1 patient representative. COVID-19 has had a major impact on numerous aspects of AATD clinical patient management in Spain, including diagnostic, treatment, and follow-up phases. The experts concluded that there is a need to strengthen coordination between Primary Care and Hospital Care and improve the coordination processes across all the organizations and actors involved in the healthcare system. Regarding telemedicine and telecare, experts have concluded that it is necessary to promote this methodology and to develop protocols and training programs. Experts have recommended developing personalized and precision medicine, and patient participation in decision-making, promoting self-care and patient autonomy to optimize their healthcare and improve their quality of life. The possibility of monitoring and treating AATD patients from home has also been proposed by experts. Another result of the study was the recommendation of the need to ensure that plasma donations are made on a regular basis by a sufficient number of healthy individuals. The study advances knowledge by highlighting the challenges faced by health professionals and changes in AATD patient management in the context of the COVID-19 pandemic. It also proposes experts' recommendations aimed at ensuring humanized and quality care for people with AATD in the post-pandemic situation. This work could serve as a reference study for physicians on their daily clinical practice with AATD patients and may also provide guidance on the changes to be put in place for the post-pandemic situation.
publishDate 2023
dc.date.none.fl_str_mv 2
2023-01-01
2023
2023-01-01
dc.type.none.fl_str_mv Article
http://purl.org/coar/resource_type/c_6501
VoR
http://purl.org/coar/version/c_970fb48d4fbd8a85
dc.type.openaire.fl_str_mv info:eu-repo/semantics/article
format article
dc.identifier.none.fl_str_mv https://ddd.uab.cat/record/271595
https://dx.doi.org/urn:doi:10.1186/s12913-023-09094-3
url https://ddd.uab.cat/record/271595
https://dx.doi.org/urn:doi:10.1186/s12913-023-09094-3
dc.language.none.fl_str_mv Inglés
eng
language_invalid_str_mv Inglés
language eng
dc.rights.none.fl_str_mv open access
http://purl.org/coar/access_right/c_abf2
https://creativecommons.org/licenses/by/4.0/
dc.rights.openaire.fl_str_mv info:eu-repo/semantics/openAccess
rights_invalid_str_mv open access
http://purl.org/coar/access_right/c_abf2
https://creativecommons.org/licenses/by/4.0/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.source.none.fl_str_mv reponame:Dipòsit Digital de Documents de la UAB
instname:Universitat Autònoma de Barcelona
instname_str Universitat Autònoma de Barcelona
reponame_str Dipòsit Digital de Documents de la UAB
collection Dipòsit Digital de Documents de la UAB
repository.name.fl_str_mv
repository.mail.fl_str_mv
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