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

Background 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 COV...

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Veröffentlicht in:BMC health services research Jg. 23; H. 1; S. 98 - 8
Hauptverfasser: Calle Rubio, Myriam, López-Campos, José Luis, Miravitlles, Marc, Michel de la Rosa, Francisco Javier, Hernández Pérez, José María, Montero Martínez, Carmen, Montoro Ronsano, José Bruno, Casas Maldonado, Francisco, Rodríguez Hermosa, Juan Luis, Tabernero Huguet, Eva María, Martínez Sesmero, José Manuel, Martínez Rivera, Carlos, Callejas González, Francisco Javier, Torres Durán, María
Format: Journal Article
Sprache:Englisch
Veröffentlicht: London BioMed Central 30.01.2023
BioMed Central Ltd
Springer Nature B.V
BMC
Schlagworte:
Alpha 1-antitrypsin deficiency
alpha 1-Antitrypsin Deficiency - diagnosis
alpha 1-Antitrypsin Deficiency - drug therapy
Care and treatment
Case studies
Chronic obstructive pulmonary disease
Coronaviruses
COVID-19
COVID-19 - epidemiology
Data collection
Delivery of Health Care
Dyspnea
Focus groups
Health Administration
Health Informatics
Health services
Healthcare system
Hospitals
Humans
Infections
Medical care
Medical diagnosis
Medicine
Medicine & Public Health
Nursing Research
Pandemics
Patient management
Patient outcomes
Patients
Precision medicine
Public Health
Pulmonary Disease, Chronic Obstructive - therapy
Qualitative research
Quality management
Quality of Life
Rare disease
Rare diseases
Recommendations
Telemedicine
Spain
COVID-19
Recommendations
Treatment
Rare disease
Healthcare system
Diagnostic
Patient management
AATD
Alpha-1-antitrypsin deficiency
Follow-up
ISSN:1472-6963, 1472-6963
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Zusammenfassung:Background 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. Methods 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. Results 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. Conclusion 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.
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ISSN:1472-6963
1472-6963
DOI:10.1186/s12913-023-09094-3