COVID-19's impact on care practice for alpha-1-antitrypsin deficiency patients
Calle Rubio, Myriam (Universidad Complutense de Madrid)
López-Campos, José Luis (Hospital Universitario Virgen del Rocío (Sevilla, Andalusia))
Miravitlles, Marc (Hospital Universitari Vall d'Hebron. Institut de Recerca)
Michel de la Rosa, Francisco Javier (Hospital de Donostia (Sant Sebastià, País Basc))
Hernández Pérez, José María (Hospital Universitario Nuestra Señora de Candelaria (Santa Cruz de Tenerife))
Montero Martínez, Carmen (Complejo Hospitalario Universitario de A Coruña)
Montoro Ronsano, José Bruno (Hospital Universitari Vall d'Hebron)
Casas-Maldonado, Francisco (Universidad de Granada)
Rodríguez Hermosa, Juan Luis (Universidad Complutense de Madrid)
Tabernero Huguet, Eva María (Hospital Universitario de Cruces (Barakaldo, País Basc))
Martínez Sesmero, José Manuel (Hospital Clínico San Carlos (Madrid))
Martínez Rivera, Carlos (Institut Germans Trias i Pujol. Hospital Universitari Germans Trias i Pujol)
Callejas González, Francisco Javier (Hospital Complejo Universitario de Albacete)
Torres Durán, María (Hospital Álvaro Cunqueiro (Vigo))
Universitat Autònoma de Barcelona

Data:	2023
Resum:	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.
Drets:	Aquest 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.
Llengua:	Anglès
Document:	Article ; recerca ; Versió publicada
Matèria:	COVID-19 ; Alpha-1-antitrypsin deficiency ; Recommendations ; Patient management ; Healthcare system ; Rare disease ; Diagnostic ; Treatment ; Follow-up ; AATD
Publicat a:	BMC health services research, Vol. 23 (january 2023) , ISSN 1472-6963

DOI: 10.1186/s12913-023-09094-3
PMID: 36717880

8 p, 731.6 KB

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