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Table 6 Recommendations for the management of AATD in the post-pandemic situation

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

1. Reinforce Primary Care and Hospital Care health services, both in terms of staff and resources, with the aim of minimizing the cancellations and postponements observed during the health crisis, which delay diagnosis, treatment, and follow-up, especially for rare diseases such as AATD

2. Develop health education programs and information materials for patients, aimed at increasing their awareness of AATD to foster their autonomy:

 a. Achieve patient self-detection of alarm symptoms, exacerbations, etc

 b. Inform about the benefits of regular exercise and optimal nutrition for disease management to counteract the inactivity caused by the confinement

 c. Maintain awareness-raising messages on the risk of tobacco use, taking advantage of the increase of smoking cessation produced during confinement

 d. Inform about the harmful effects of alcohol in order to discourage its consumption

 e. Raise awareness of the advantages of maintaining in certain cases the measures taken against coronavirus to avoid infection by other respiratory viruses and to protect against harmful substances in the environment that may aggravate COPD

3. Ensure the possibility of self-administration of treatment to increase patient autonomy and self-care. This type of treatment has already demonstrated several positive points in other pathologies (e.g. in hereditary angioedema) and is supported by healthcare professionals at the European level

4. Ensure the availability of TAA replacement therapy from home and inform patients of this possibility. In this way, those patients who prefer this option will be able to opt for it to increase their quality of life, whilst reducing the burden of care on the health center

5. Develop and implement coordination and communication strategies between the different levels of care, between different specialties, as well as between the different agents in the system to improve the approach to the AATD care process

6. Promote the development of personalized and precision medicine in national and regional health strategies and plans. The pandemic has highlighted the relevance of personalized treatments and, in the case of AATDs, it is particularly important due to the variability of their natural history

7. Prescribe individualized physical activity programs, taking into account the capacities and needs of each patient, with the aim of subverting the bad habits acquired during the pandemic, as well as assessing the nutritional status of the patient individually (dietary, anthropometric, and hematological studies, etc.) for the early identification of those patients at a greater risk of malnutrition and establish the degree of nutritional support recommended

8. Promote the development of plasma donation campaigns in coordination with blood banks and raise public awareness of the importance of plasma donation for this type of treatment, such as AATD

9. Develop monitoring instruments that can be used from the patient's home and provide sufficient information for decision-making in the AATD care process (questionnaires in apps, spirometers incorporated into mobile devices, e.g.) to promote telemedicine

10. Develop training programs in telecare for healthcare workers. In this regard, it is recommended that resources for telecare be increased, so that they are accessible to patients as a complementary tool to face-to-face care

11. Promote psychosocial support, continuous and personalized communication with the patient, assisting patients from a holistic perspective, taking into account their clinical, social, and personal characteristics, their needs, etc