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

BMC Health Services Research volume 23, Article number: 98 (2023) Cite this article

Abstract

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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Background

The ongoing coronavirus disease 2019 (COVID-19) pandemic has disrupted every aspect of our lives. The need to provide high-level care to an enormous number of patients with the COVID-19 infection during this pandemic, and the restrictions and lockdowns imposed by governments, has impacted resources and restricted the routine care of all non-COVID-19 conditions [1]. Since the beginning of the pandemic, people living with chronic disorders have not received the necessary attention that they deserve, this being even more serious in the case of patients with rare diseases [2,3,4]. Patients with alpha-1 antitrypsin deficiency (AATD), commonly categorized as a rare disease, have been one of the groups affected by the changes in healthcare management brought about by COVID-19. AATD is one of the most common genetic disorders leading to a wide spectrum of clinical manifestations, ranging from no symptoms to a progressively debilitating systemic disease, most commonly affecting lung and liver [5]. Adult AATD patients tend to present the usual symptoms of chronic obstructive pulmonary disease (COPD), but with an earlier onset: cough, expectoration, dyspnea and frequent exacerbations, although the main symptom is progressive dyspnea [6]. AATD’s estimated prevalence is between 1:2500 and 1:5000 according to studies from the United States and Europe [7, 8], but it is necessary to emphasize that it's estimated that a large number of patients are undiagnosed [9], and also that there’s a long delay between symptom onset and AATD diagnosis [10].

Recent publications have linked AATD to COVID-19. It’s been suggested that AAT may act as a protective factor against the disease for several reasons, such as its inhibition of the TMPRSS2 and ADAM17 proteases, which are key to the virus’s pathophysiology [11, 12]. AAT’s role in SARS CoV-2 cell infection has been studied, and clinical trials are underway to examine AAT’s potential usefulness as a treatment for COVID 19 [13]. On the other hand, the frequently associated comorbidities in AATD patients, including a higher prevalence of hypertension, chronic kidney disease, COPD, and diabetes, could predispose patients to severe COVID-19 and a poor prognosis [14, 15]. Consequently, AATD patients would be a vulnerable group for infection with the virus [16]. Change in health system routines due the COVID-19 pandemic and the possible relationship between AATD and COVID-19 infection means it’s necessary to study the effects on AATD patient management. Unfortunately, there’s a knowledge gap in this regard, as no such studies have been carried out to date.

Therefore, 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

For this study, guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research (COREQ) were followed [17].

Design

A qualitative descriptive case study with a holistic single-case design was conducted [18], using focus groups (FGs) with experts in AATD clinical management. Qualitative methods are suitable for recognizing the beliefs, values, and motivations that underlie individual actions and behaviors [19]. A case study is a type of research design that studies a specific phenomenon in a real-life setting, and it can be used to identify and describe experiences regarding care and diseases [18]. A case study may consist of several units, which together describe a phenomenon in a complete way. These units may be different participants or experts who are linked by the phenomenon under study [18]. In this project, the phenomenon under examination is COVID-19’s impact on AATD patient management. Two focus groups were conducted, the first was held to evaluate the changes brought about by the pandemic situation, as well as the new needs and recommendations aimed at ensuring humanized and quality care for people with AATD in the current and post-pandemic situation. In the second focus group, the work carried out during the first workshop was shared with a wider number of experts with the aim of gathering additional contributions and reaching a consensus regarding the pandemic’s impact on the AATD care process and the unmet needs that have been revealed, as well as the recommendations issued in this regard for the post-pandemic situation. Finally, the insights obtained from both focus groups were compiled and summarized differentiating between impacts (positive and negative), unmet needs and recommendations.

The study duration was from March 1st, 2021, to August 1st, 2021.

Participants

The inclusion criteria consisted of 14 professionals who have direct and extensive experience in the clinical management of AATD patients’ (12 pneumologists and 2 hospital pharmacists from 11 different hospitals in Spain) and a patient’s representative. Participants were divided into two groups: the core group was made up of 3 experts (2 pneumologists and 1 hospital pharmacist) who acted as study coordinators and participated in both FGs. The rest of the participants took part in the second FG. In addition, the patients’ perspective was considered. For this purpose, an in-depth- interview with the President of the Spanish Patients’ Association (Alfa 1 Spain) who is a patient himself. All the experts reviewed and validated the documentation generated.

Data collection

In order to examine different perspectives within the same group, FGs were held to gain an understanding of the problems faced by the group and to aid identification of values and norms [20]. This method of data collection is consistent with the case study’s design [18]. The first FG was held on May 4th,2021, while the second FG was conducted on May 25th,2021.

Results

The COVID-19 pandemic’s impact on AATD Diagnosis management

Experts stated both positive and negative effects of the COVID-19 pandemic on the AATD diagnosis stage (Table 1).

Table 1 Positive vs negative effects of COVID-19 pandemic on AATD diagnostic stage
Full size table

The COVID-19 pandemic’s impact on AATD treatment management

In this phase of treatment management, the changes in protocols brought about by the COVID-19 pandemic have shown several positive aspects, as expressed by experts. However, there has been also an important negative impact which have resulted in new issues or exacerbated pre-existing ones. (Table 2).

Table 2 Positive vs negative effects of COVID-19 pandemic on AATD treatment management
Full size table

The COVID-19 pandemic’s impact on AATD Follow-up management

The development of new tools for remote assistance have been an important advancement during COVID-19 for AATD patients in the different stages of the care process, especially for follow-up. However, experts identified also some negative effects of the pandemic in patient care during this stage (Table 3).

Table 3 Positive vs negative effects of COVID-19 pandemic on AATD follow-up
Full size table

The COVID-19 pandemic’s all-round impact on AATD management

Expert identified certain across-the-board aspects on AATD management that have been affected by COVID-19 pandemic, some of them in a negative way whereas others are positive for AATD management (Table 4).

Table 4 Cross-board impact of COVID-19 pandemic on AATD management
Full size table

Needs identified in AATD clinical management due to the COVID-19 pandemic

As a consequence of this health crisis caused by the COVID-19 pandemic, a series of challenges have been identified by the experts regarding the AATD care process (Table 5).

Table 5 Identified needs on the clinical management of AATD due to the COVID-19 pandemic
Full size table

Recommendations for AATD management in the post-pandemic situation

After identifying COVID-19’s impact on AATD patients’ clinical management, the experts concluded with several recommendations for improving the post-pandemic situation (Table 6).

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

Discussion

Although there are studies on COVID-19’s impact on COPD management as well as on rare diseases [2, 21], to the best of our knowledge this is the first study to analyze COVID-19’s impact on AATD patient management. Our findings revealed that COVID-19 has had a major impact on numerous aspects of clinical patient management in Spain, including the diagnostic, treatment and follow-up phases. In addition, the pandemic context has highlighted various needs in AATD patient care; experts have therefore drawn up a series of recommendations in order to meet these needs and address the impact caused by COVID-19.

An overall view of the results highlights some aspects repeated in several sections of the study. One of them is that COVID-19 has caused cancellation or postponement of a large number of medical procedures, impacting AATD patients’ diagnosis, treatment and follow-up phases. As a result of health service saturation due to the pandemic, chronically ill patients have had their hospital and primary care consultations cancelled [22]. In Spain, a survey estimated that 43% of respiratory patients have been unable to make face-to-face appointments with a specialist since the first months of 2020 [23], a fact that supports the perception shown by this study’s experts. Another study concluded that there was a reduction in the number of complementary healthcare tests conducted due to the COVID-19 pandemic in COPD [24], and rare metabolic patients [3]. Therefore, as described by the experts in their recommendations, it would be necessary to strengthen both primary and hospital care in order to prevent these cancellations and delays, which can cause great harm to health outcomes in AATD patients.

Another aspect highlighted in this study was telemedicine/telecare’s implementation and growth. On the one hand, this has had a positive impact, as it’s enabled awareness and implementation of new tools for the health system that didn’t used to exist. However, its implementation was forced without prior planning and this is linked to feelings of insecurity in patients, who expressed a mixed perception of this type of care [25]. Implementation of telehealth is a challenge for managing patients with chronic respiratory diseases, as shown in a recent study [26]. One of the ways to access these tools’ full potential would be to improve health professionals’ training in telehealth. In this respect, there are several studies that even point to the need to include telemedicine training in the medical school curriculum [27, 28].

Another issue that’s recurred throughout this study is the relevance of and need for patients to have an active role not only in decision-making but also in boosting their autonomy and self-care. According to experts, patient education both on self-diagnosis and self-treatment is necessary and beneficial, based on the experiences lived during the COVID-19 pandemic. Regarding this aspect, there’s a need to make home-care available for the AATD treatment. The aim should be to reduce the number of doses of replacement therapy, shorten administration times and offer the possibility of administering it at home in order to increase the quality of life of those patients who prefer not to go to the health center [5, 23]. In this regard, the possibility of monitoring patients from home by developing instruments that can be used from patients’ homes and provide information for decision-making in the AATD care process (e.g., questionnaires on apps, spirometers incorporated into mobile devices) was also proposed as a recommendation by experts. With the rise of handheld spirometers, at-home spirometry has become common for daily monitoring of the amount and/or speed of air that can be inhaled and exhaled [29]. This could be a functional tool used in AATD patients’ home monitoring, enabling health system resources to be freed up while improving patient follow-up.

Personalized medicine was another point that came up during the study on several occasions. In the field of AATD patient management, there’s currently increasing interest in personalized medicine, especially regarding ATT treatment, and including the use of extended dosing intervals and at-home treatment [30, 31]. In the near future, increased patient stratification will allow for enhanced application of personalized medicine and pro-active treatment regimens, resulting in reduced costs and improvement in quality of life [32]. Experts have therefore recommended the need to boost development of personalized medicine for AATD patient management.

Another aspect relating to treatment availability are blood transfusions, which during the pandemic have suffered numerous cancellations due to the decrease in the number of donations in Spain, as attested by the study carried out by García-Erce et al. [33]. The importance of this resource, not only for clinically managing AATD [5, 34], but also in other medical situations [35, 36], has prompted experts to emphasize this aspect in several sections of this study as well as in the recommendations.

Regarding the healthcare system, on several occasions during the study, experts expressed the need and recommendation to increase and improve the coordination processes across all the organizations and actors involved. In the end, networking and collaboration between different specialties should be encouraged when forming care or working groups in order to improve the approach to pathologies such as AATD. In this regard, it should be noted that the Spanish healthcare system is quite complex, due in part to its administrative structure, which sometimes complicates coordination between its different units [37,38,39]. It’s therefore necessary to implement coordination measures that help to overcome barriers to achieving more effective and better integrated patient management.

This study has several limitations. Firstly, the results probably cannot be directly extrapolated onto other health systems. Therefore, this study’s recommendations can be implemented directly in the Spanish context but might not be appropriate for other countries or regions. Clinicians with experience in other healthcare systems should assess whether each recommendation in this study can be transferred onto their clinical practice and adapted or discarded by those who don’t consider it appropriate. Following the same methods as described in this study will enable other researchers to apply the same approach in other contexts. Another possible limitation in the study is to do with the limited number of health professionals who took part in the FGs. Although we tried to make it representative and diverse, there’s always the possibility of bias, since not all health professionals involved in AATD in Spain were represented. Additionally, another possible limitation is the use of online platforms to conduct the FGs, due to the restrictions caused by the COVID-19 pandemic. This could lead to some communication bias, although this technology may also have advantages such as broadening participation [40]. Lastly, it’s important to highlight that, even though it is predictable that the experts’ recommendations could have a positive impact in the clinical care of these patients, they would need to be tested before concluding their utility in real clinical practice.

Conclusions

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. Though many of the issues and problems identified were also present before the pandemic, they have been exacerbated and are of greater concern in the pandemic situation. The study also proposes experts’ recommendations aimed at ensuring humanized and quality care for people with AATD. It could therefore serve as a reference study for all those physicians who’ve had to suffer COVID-19’s impact on their daily clinical practice in AATD patient management, and may also provide guidance on the changes to be put in place for the post-pandemic situation.

Availability of data and materials

All data generated or analysed during this study are included in this published article.

Abbreviations

AATD:

Alpha-1 antitrypsin deficiency

COREQ:

Consolidated criteria for reporting qualitative research

COVID-19:

Coronavirus disease 2019

COPD:

Chronic obstructive pulmonary disease

FGs:

Focus groups

References

  1. Chiesa V, Antony G, Wismar M, Rechel B. COVID-19 pandemic: health impact of staying at home, social distancing and “lockdown” measures-a systematic review of systematic reviews. J Public Health (Oxf). 2021;43(3):e462–81.

    Article  Google Scholar 

  2. Chowdhury SF, Al Sium SM, Anwar S. Research and management of rare diseases in the COVID-19 pandemic era: challenges and countermeasures. Front public Heal. 2021;9:640282.

    Article  Google Scholar 

  3. Lampe C, Dionisi-Vici C, Bellettato CM, Paneghetti L, LingenBond CvanS, et al. The impact of COVID-19 on rare metabolic patients and healthcare providers: results from two MetabERN surveys. Orphanet journal of rare diseases. 2020;15(1):341.

    Article  CAS  Google Scholar 

  4. Talarico R, Aguilera S, Alexander T, Amoura Z, Antunes AM, Arnaud L, et al. The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET. Nat Rev Rheumatol. 2021;17(3):177–84.

    Article  CAS  Google Scholar 

  5. Sandhaus RA, Turino G, Brantly ML, Campos M, Cross CE, Goodman K, et al. The diagnosis and management of alpha-1 antitrypsin deficiency in the adult. Chronic Obstr Pulm Dis (Miami, Fla). 2016;3(3):668–82.

    Google Scholar 

  6. Sanduzzi A, Ciasullo E, Capitelli L, SanduzziZamparelli S, Bocchino M. Alpha-1-antitrypsin deficiency and bronchiectasis: a concomitance or a real association? Int J Environ Res Public Health. 2020;17(7):2294.

    Article  CAS  Google Scholar 

  7. Silverman EK, Miletich JP, Pierce JA, Sherman LA, Endicott SK, Broze GJJ, et al. Alpha-1-antitrypsin deficiency. high prevalence in the St. Louis area determined by direct population screening. Am Rev Respir Dis. 1989;140(4):961–6.

    Article  CAS  Google Scholar 

  8. Rahaghi FF, Sandhaus RA, Brantly ML, Rouhani F, Campos MA, Strange C, et al. The prevalence of alpha-1 antitrypsin deficiency among patients found to have airflow obstruction. COPD. 2012;9(4):352–8.

    Article  Google Scholar 

  9. Nakanishi T, Forgetta V, Handa T, Hirai T, Mooser V, Lathrop GM, et al. The undiagnosed disease burden associated with alpha-1 antitrypsin deficiency genotypes. Eur Respir J. 2020;56(6):1700610.

    Article  Google Scholar 

  10. Köhnlein T, Janciauskiene S, Welte T. Diagnostic delay and clinical modifiers in alpha-1 antitrypsin deficiency. Ther Adv Respir Dis. 2010;4(5):279–87.

    Article  Google Scholar 

  11. Bai X, Hippensteel J, Leavitt A, Maloney JP, Beckham D, Garcia C, et al. Hypothesis: Alpha-1-antitrypsin is a promising treatment option for COVID-19. Med Hypotheses. 2021;146:110394.

    Article  CAS  Google Scholar 

  12. de Loyola MB, Dos Reis TTA, de Oliveira GXLM, da Fonseca PJ, Argañaraz GA, Argañaraz ER. Alpha-1-antitrypsin: a possible host protective factor against Covid-19. Rev Med Virol. 2021;31(2):e2157.

    Article  Google Scholar 

  13. Azouz NP, Klingler AM, Callahan V, Akhrymuk IV, Elez K, Raich L, et al. Alpha 1 Antitrypsin is an Inhibitor of the SARS-CoV-2-Priming Protease TMPRSS2. bioRxiv. 2020:2020.05.04.077826. https://doi.org/10.1101/2020.05.04.077826. Update in: Pathog Immun. 2021 Apr 26;6(1):55–74.

  14. Greulich T, Nell C, Hohmann D, Grebe M, Janciauskiene S, Koczulla AR, et al. The prevalence of diagnosed α1-antitrypsin deficiency and its comorbidities: results from a large population-based database. Eur Respir J. 2017;49(1):1600154.

    Article  Google Scholar 

  15. Luo L, Fu M, Li Y, Hu S, Luo J, Chen Z, et al. The potential association between common comorbidities and severity and mortality of coronavirus disease 2019: A pooled analysis. Clin Cardiol. 2020;43(12):1478–93.

    Article  Google Scholar 

  16. Yang C, Chapman KR, Wong A, Liu M. α1-Antitrypsin deficiency and the risk of COVID-19: an urgent call to action. Lancet Respir Med. 2021;9(4):337–9.

    Article  CAS  Google Scholar 

  17. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Heal care J Int Soc Qual Heal Care. 2007;19(6):349–57.

    Article  Google Scholar 

  18. Fàbregues S, Fetters MD. Fundamentals of case study research in family medicine and community health. Fam Med community Heal. 2019;7(2):e000074.

    Article  Google Scholar 

  19. Creswell JW, Poth CN. Qualitative inquiry and research design choosing among five approaches. 4th ed. Thousand Oaks: SAGE Publications, Inc.; 2018.

    Google Scholar 

  20. Moser A, Korstjens I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. Eur J Gen Pract. 2018;24(1):9–18.

    Article  Google Scholar 

  21. Salvi SS, Dhar R, Mahesh PA, Udwadia ZF, Behra D. COPD management during the COVID-19 pandemic. Lung India. 2021;38(Supplement):S80–5.

    Article  Google Scholar 

  22. Czeisler MÉ, Marynak K, Clarke KEN, Salah Z, Shakya I, Thierry JM, et al. Delay or avoidance of medical care because of COVID-19-related concerns - United States, June 2020. MMWR Morb Mortal Wkly Rep. 2020;69(36):1250–7.

    Article  CAS  Google Scholar 

  23. Aboussouan LS, Stoller JK. Detection of alpha-1 antitrypsin deficiency: a review. Respir Med. 2009;103(3):335–41.

    Article  Google Scholar 

  24. Pleguezuelos E, Del Carmen A, Moreno E, Ortega P, Vila X, Ovejero L, et al. The experience of COPD patients in lockdown due to the COVID-19 pandemic. Int J Chron Obstruct Pulmon Dis. 2020;15:2621–7.

    Article  CAS  Google Scholar 

  25. Holtz BE. Patients perceptions of telemedicine visits before and after the coronavirus disease 2019 pandemic. Telemed J e-health Off J Am Telemed Assoc. 2021;27(1):107–12.

    Google Scholar 

  26. Rutkowski S. Management challenges in chronic obstructive pulmonary disease in the COVID-19 Pandemic: telehealth and virtual reality. J Clin Med. 2021;10(6):1261. https://doi.org/10.3390/jcm10061261.

    Article  Google Scholar 

  27. Jumreornvong O, Yang E, Race J, Appel J. Telemedicine and medical education in the age of COVID-19. Acad Med. 2020;95(12):1838–43.

    Article  Google Scholar 

  28. Camhi SS, Herweck A, Perone H. Telehealth training is essential to care for underserved populations: a medical student perspective. Med Sci Educ. 2020;30:1–4.

    Article  Google Scholar 

  29. Fan KG, Mandel J, Agnihotri P, Tai-Seale M. Remote patient monitoring technologies for predicting chronic obstructive pulmonary disease exacerbations: review and comparison. JMIR mHealth uHealth. 2020;8(5):e16147.

    Article  Google Scholar 

  30. Stockley RA, Miravitlles M, Vogelmeier C. Augmentation therapy for alpha-1 antitrypsin deficiency: towards a personalised approach. Orphanet J Rare Dis. 2013;8:149.

    Article  Google Scholar 

  31. Horváth I, Canotilho M, Chlumský J, Chorostowska-Wynimko J, Corda L, Derom E, et al. Diagnosis and management of α(1)-antitrypsin deficiency in Europe: an expert survey. ERJ open Res. 2019;5(1):00171–2018.

    Article  Google Scholar 

  32. Mathur S, Sutton J. Personalized medicine could transform healthcare. Biomed Rep. 2017;7(1):3–5.

    Article  Google Scholar 

  33. García-Erce JA, Romón-Alonso Í, Jericó C, Domingo-Morera JM, Arroyo-Rodríguez JL, Sola-Lapeña C, et al. Blood donations and transfusions during the COVID-19 pandemic in spain: impact according to autonomous communities and hospitals. Int J Environ Res Public Health. 2021;18(7):3480.

    Article  Google Scholar 

  34. Miravitlles M, Dirksen A, Ferrarotti I, Koblizek V, Lange P, Mahadeva R, et al. European respiratory society statement: diagnosis and treatment of pulmonary disease in α(1)-antitrypsin deficiency. Eur Respir J. 2017;50(5):1700610.

    Article  Google Scholar 

  35. Cai X, Ren M, Chen F, Li L, Lei H, Wang X. Blood transfusion during the COVID-19 outbreak. Blood Transfus. 2020;18(2):79–82.

    Google Scholar 

  36. Delabranche X, Kientz D, Tacquard C, Bertrand F, Roche A-C, Tran Ba Loc P, et al. Impact of COVID-19 and lockdown regarding blood transfusion. Transfusion. 2021;61(8):2327–35.

    Article  CAS  Google Scholar 

  37. Bernal-Delgado E, Garcia-Armesto S, Oliva J, SanchezMartinez FI, Repullo JR, Pena-Longobardo LM, et al. Spain: health system review. Health Syst Transit. 2018;20(2):1–179.

    Google Scholar 

  38. Vargas Lorenzo I, Vázquez Navarrete ML. [Barriers and facilitators to health care coordination in two integrated health care organizations in Catalonia (Spain)].Gac Sanit. 2007;21(2):114–23.

  39. García-Armesto S, Begoña Abadía-Taira M, Durán A, Hernández-Quevedo C, Bernal-Delgado E. Spain: health system review. Health Syst Transit. 2010;12(4):1–295, xix–xx.

  40. Fulcher MR, Bolton ML, Millican MD, Michalska-Smith MJ, Dundore-Arias JP, Handelsman J, et al. Broadening participation in scientific conferences during the era of social distancing. Trends Microbiol. 2020;28(12):949–52.

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Acknowledgements

We want to thank Ascendo Consulting for its support throughout the project, including manuscript editorial and writing support. We also thank Mariano Pastor for his contribution to the project as a patient representative on the FGs, as the president of the “Asociación Alfa-1 España”.

Funding

This study was funded by CSL Behring.

Author information

Authors and Affiliations

  1. Pulmonology Department, Health Research Institute of the Hospital Clínico San Carlos (IdISSC), San Carlos Clinical Hospital, Madrid, Spain

    Myriam Calle Rubio & Juan Luis Rodríguez Hermosa

  2. Department of Medicine, School of Medicine, Universidad Complutense de Madrid, Madrid, Spain

    Myriam Calle Rubio & Juan Luis Rodríguez Hermosa

  3. Medical-Surgical Unit for Respiratory Diseases, Biomedicine Institute of Sevilla (IBiS), Virgen del Rocío University Hospital, Seville, Spain

    José Luis López-Campos

  4. Pulmonology Department, Research Institute of Vall d’Hebron (VHIR), Vall d’Hebron University Hospital, Barcelona, Spain

    Marc Miravitlles

  5. Network of Centers for Biomedical Research On Respiratory Diseases (CIBERES), Carlos III Health Institute, Madrid, Spain

    Marc Miravitlles, José María Hernández Pérez & Carlos Martínez Rivera

  6. Pulmonology Department, Donostia University Hospital, San Sebastián, Spain

    Francisco Javier Michel de la Rosa

  7. Pulmonology Department, Nuestra Señora de Candelaria University Hospital, Santa Cruz de Tenerife, Spain

    José María Hernández Pérez

  8. Pulmonology Department, A Coruña University Hospital, A Coruña, Spain

    Carmen Montero Martínez

  9. Department of Pharmacy, Vall d’Hebron University Hospital, Barcelona, Spain

    José Bruno Montoro Ronsano

  10. Pulmonology Department, San Cecilio Clinical University Hospital, Granada, Spain

    Francisco Casas Maldonado

  11. School of Health Science, University of Granada, Granada, Spain

    Francisco Casas Maldonado

  12. Pulmonology Department, Cruces University Hospital, Barakaldo, Spain

    Eva María Tabernero Huguet

  13. Department of Pharmacy, San Carlos Clinical Hospital, Madrid, Spain

    José Manuel Martínez Sesmero

  14. Pulmonology Department, Research Institute of Germans Trias I Pujol (IGTiP), Germans Trias I Pujol University Hospital, Barcelona, Spain

    Carlos Martínez Rivera

  15. Pulmonology Department, Albacete University Hospital Complex, Albacete, Spain

    Francisco Javier Callejas González

  16. Pulmonology Department, Health Research Institute of Galicia Sur (IISGS), Álvaro Cunqueiro Hospital, Estrada Clara Campoamor, 342. 36312, Vigo, Spain

    María Torres Durán

Authors
  1. Myriam Calle Rubio
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  2. José Luis López-Campos
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  3. Marc Miravitlles
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  4. Francisco Javier Michel de la Rosa
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  5. José María Hernández Pérez
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  6. Carmen Montero Martínez
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  7. José Bruno Montoro Ronsano
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  8. Francisco Casas Maldonado
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  9. Juan Luis Rodríguez Hermosa
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  10. Eva María Tabernero Huguet
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  11. José Manuel Martínez Sesmero
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  12. Carlos Martínez Rivera
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  13. Francisco Javier Callejas González
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  14. María Torres Durán
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Contributions

All authors have contributed to the conception, design, acquisition, analysis, and interpretation of the data, and have participated in the drafting and reviewing of the manuscript, approving the submitted version.

Corresponding author

Correspondence to María Torres Durán.

Ethics declarations

Ethics approval and consent to participate

This study was performed following the Helsinki Declaration. The study was conducted according to national regulations, as described by Royal Decree 1090/2015. According to the aforementioned legislation, due to the nature of the study, approval by an ethics committee was not required.

Consent for publication

Not aplicable.

Competing interests

MC has received speaking fees from Boehringer Ingelheim, CSL Behring, AstraZeneca, GlaxoSmithKline, Griffols, Menarini, and Novartis and consulting fees from GlaxoSmith­Kline, Gebro Pharma and Novartis. JLLC has received honoraria for lecturing, scientific advice, participation in clinical studies or writing for publications for AstraZeneca, Bial, Boehringer Ingelheim, Chiesi, CSL Behring, Ferrer, Gebro, GlaxoSmithKline, Grifols, Menarini, Megalabs, Novartis and Rovi. MM has received speaker fees from AstraZeneca, Boehringer Ingelheim, Chiesi, Cipla, Menarini, Rovi, Bial, Sandoz, Zambon, CSL Behring, Grifols and Novartis, consulting fees from AstraZeneca, Atriva Therapeutics, Boehringer Ingelheim, Chiesi, GlaxoSmithKline, Bial, Gebro Pharma, CSL Behring, Inhibrx, Laboratorios Esteve, Ferrer, Mereo Biopharma, Verona Pharma, Spin Therapeutics, ONO Pharma, pH Pharma, Palobiofarma SL, Takeda, Novartis, Sanofi and Grifols and research grants from Grifols. FJMDLR has received speaker fees and/or consulting fees and/or support to attend Congresses from AstraZeneca, Boehringer-Ingelheim, Chiesi, CSL Behring, GlaxoSmithKline, Grifols, Menarini, Novartis, Sanofi and Teva. JMHP has received speaker fees from GRIFOLS, CSL Behring, GSK, Astra-Zeneca, Menarini Laboratories, Boehringer Ingelheim, FAES, Esteve Laboratories, Ferrer Laboratories, Mundipharma, Rovi Laboratories, Roche, Novartis, Pfizer, Acthelion-Jansen, Chiesi and Bial Laboratories for the conducting courses, talks, consultancies and other activities related to my professional activity. CMM has received speaking and consulting fees from CSL Behring and Grifols. JBMR has received speaker fees and/or consulting fees and/or support to attend Congresses from CSL Behring, NovoNordisk, Grifols, Pfizer, Biotest and Takeda. FCM has received speaker fees from AstraZeneca, Boehringer Ingelheim, Chiesi, CSL Behring, Glaxo Smith Klein, Grifols and Novartis, consulting fees from AstraZeneca, Glaxo Smith Kline, CSL Behring, Sanofi and Grifols. JLRH has received speaker fees from CSL Behring and Grifols, and research grants from Grifols. ET has received consulting fees from CSL Behring. JMMS has received honoraria for conducting courses and consultancy from CSL Behring. CMR has received honoraria during the last 3 years for lecturing, scientific advice and participation in clinical studies from Glaxo SmithKline, Astra Zeneca, TEVA, Sanophi, CSL Behring, Mundipharma, Chiesi, Orion and Novartis. FJCG has received honoraria during the last 3 years for lecturing and scientific advice from GlaxoSmithKline, Chiesi, Boehringer Ingelheim, Mundipharma, Pfizer, Novartis, Esteve, Teva Pharmaceutical, Ferrer, Rovi, Roche, Astra Zeneca, Bial, Actelion, Alter, CSL Behring, Faes Farma, Alter, Grifols, Sanofi Genzyme y Gebro Pharma. MTD has received speaking and consulting fees from CSL Behring and Grifols.

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Calle Rubio, M., López-Campos, J.L., Miravitlles, M. et al. COVID-19’s impact on care practice for alpha-1-antitrypsin deficiency patients. BMC Health Serv Res 23, 98 (2023). https://doi.org/10.1186/s12913-023-09094-3

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BMC Health Services Research

ISSN: 1472-6963

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