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

BMC Health Services Research

Research

José Manuel Martínez Sesmero¹  José Bruno Montoro Ronsano²  José Luis López-Campos³  José María Hernández Pérez⁴  Carlos Martínez Rivera⁵  Carmen Montero Martínez⁶  Francisco Javier Callejas González⁷  Eva María Tabernero Huguet⁸  Francisco Javier Michel de la Rosa⁹  María Torres Durán^1,10  Juan Luis Rodríguez Hermosa^1,11  Myriam Calle Rubio^1,11  Marc Miravitlles^1,12  Francisco Casas Maldonado^1,13 

[1] Department of Pharmacy, San Carlos Clinical Hospital, Madrid, Spain;Department of Pharmacy, Vall d’Hebron University Hospital, Barcelona, Spain;Medical-Surgical Unit for Respiratory Diseases, Biomedicine Institute of Sevilla (IBiS), Virgen del Rocío University Hospital, Seville, Spain;Network of Centers for Biomedical Research On Respiratory Diseases (CIBERES), Carlos III Health Institute, Madrid, Spain;Pulmonology Department, Nuestra Señora de Candelaria University Hospital, Santa Cruz de Tenerife, Spain;Network of Centers for Biomedical Research On Respiratory Diseases (CIBERES), Carlos III Health Institute, Madrid, Spain;Pulmonology Department, Research Institute of Germans Trias I Pujol (IGTiP), Germans Trias I Pujol University Hospital, Barcelona, Spain;Pulmonology Department, A Coruña University Hospital, A Coruña, Spain;Pulmonology Department, Albacete University Hospital Complex, Albacete, Spain;Pulmonology Department, Cruces University Hospital, Barakaldo, Spain;Pulmonology Department, Donostia University Hospital, San Sebastián, Spain;Pulmonology Department, Health Research Institute of Galicia Sur (IISGS), Álvaro Cunqueiro Hospital, Estrada Clara Campoamor, 342. 36312, Vigo, Spain;Pulmonology Department, Health Research Institute of the Hospital Clínico San Carlos (IdISSC), San Carlos Clinical Hospital, Madrid, Spain;Department of Medicine, School of Medicine, Universidad Complutense de Madrid, Madrid, Spain;Pulmonology Department, Research Institute of Vall d’Hebron (VHIR), Vall d’Hebron University Hospital, Barcelona, Spain;Network of Centers for Biomedical Research On Respiratory Diseases (CIBERES), Carlos III Health Institute, Madrid, Spain;Pulmonology Department, San Cecilio Clinical University Hospital, Granada, Spain;School of Health Science, University of Granada, Granada, Spain;

关键词: COVID-19;    Alpha-1-antitrypsin deficiency;    Recommendations;    Patient management;    Healthcare system;    Rare disease;    Diagnostic;    Treatment;    Follow-up;    AATD;   

DOI  :  10.1186/s12913-023-09094-3

 received in 2022-04-20, accepted in 2023-01-23,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundPatients 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.MethodsA 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.ResultsCOVID-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.ConclusionThe 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.

【 授权许可】

CC BY   
© The Author(s) 2023