Impact on the activity of rare disease organisations and their relatives during the COVID-19 containment in Spain

Authors

  • José Manuel Guerra Departamento de Psicología Social. Universidad de Sevilla
  • Gema Esteban-Bueno Unidad de gestión clínica Almería Periferia- Distrito Sanitario Almería. Servicio Andaluz de Salud.
  • Juan R. Coca Unidad de investigación social en salud y enfermedades raras. Departamento de Sociología y Trabajo Social. Universidad de Valladolid

DOI:

https://doi.org/10.26754/ojs_ais/ais.2021426230

Keywords:

Enclosure; COVID-19; Rare Diseases; associations; third sector;

Abstract

The COVID-19 pandemic has become a health crisis, with wide-ranging repercussions. Rare disease (RD) services have been affected by the changes resulting from the measures for their management. This study has analysed the impact of strict containment on the services and activity of RD-related organisations. A total of 81 RE entities in Spain participated in the study. The results showed that there has been a negative effect on the number of activities and services that the entities have been able to provide during this period. This was due both to the elimination of these activities and services and to the changes that had to be made in order to be able to provide them.

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References

Baynam, G. S., Wicking, C., Bhattacharya, K., & Millis, N. (2020). Protecting the rare during a rare pandemic. The Medical journal of Australia, 213(2), 94–94.e1. https://doi.org/10.5694/mja2.50671

Bertran Recasens, B. y Rubio, M. A. (2020). Neuromuscular Diseases Care in the Era of COVID-19. Frontiers in neurology, 11, 588929. https://doi.org/10.3389/fneur.2020.588929

CCST. (2020). DONANTES CONVALECIENTES DE LA COVID-19 Directrices para la obtención de plasma de donantes convalecientes de la Enfermedad del Coronavirus SARS-CoV-2 ( COVID-19 ). Minsterio de Sanidad España.

Chowdhury, S. F., Sium, S., & Anwar, S. (2021). Research and Management of Rare Diseases in the COVID-19 Pandemic Era: Challenges and Countermeasures. Frontiers in public health, 9, 640282. https://doi.org/10.3389/fpubh.2021.640282

Chung, C. C., Wong, W. H., Fung, J. L., Hong Kong, R. D., & Chung, B. H. (2020). Impact of COVID-19 pandemic on patients with rare disease in Hong Kong. European Journal of Medical Genetics, 63(12), 104062. https://doi.org/10.1016/j.ejmg.2020.104062

Clemens, V., Deschamps, P., Fegert, J. M., Anagnostopoulos, D., Bailey, S., Doyle, M., Eliez, S., Hansen, A. S., Hebebrand, J., Hillegers, M., Jacobs, B., Karwautz, A., Kiss, E., Kotsis, K., Kumperscak, H. G., Pejovic-Milovancevic, M., Christensen, A., Raynaud, J. P., Westerinen, H., & Visnapuu-Bernadt, P. (2020). Potential effects of "social" distancing measures and school lockdown on child and adolescent mental health. European child & adolescent psychiatry, 29(6), 739–742. https://doi.org/10.1007/s00787-020-01549-w

Coca J & Cárcel JAR. (2021). The city emptied and the homes and hospitals turned into 'the world'. A sociological approach [version 1; peer review: 3 approved]. F1000Research 2021, 10:424. https://doi.org/10.12688/f1000research.52097.1

Esteban-Bueno, G., Coca, J. R., Guerra de los Santos, J. M., & Ruiz-Castañeda, D. (2021). Analysis of the quality of life in persons with wolfram syndrome and their caregivers: Sociological and psychological aspects. In Obets (Vol. 15, Issue 2). https://doi.org/10.14198/OBETS2020.15.2.04

Esteban, G., & Ruiz-Castañeda, D. (2020). Un perspectiva Biopsicosocial de las enfermedades raras. El síndrome de Wolfram como modelo. Soria, CEASGA.

Eurordis (2020). How has COVID-19 impacted people with rare diseases?. Accesible en: https://www.eurordis.org/publication/how-has-covid-19-impacted-people-rare-diseases-0

FEDER/CREER (2018): Estudio sobre situación de Necesidades Sociosanitarias de las Personas con Enfermedades Raras en España. Estudio ENSERio. Datos 2016-2017, Madrid, FEDER/CREER.

Márquez, J. R. (2020). Teleconsultation in a pandemic due to coronavirus: Challenges for telemedicine in the post-COVID-19 era. Revista Colombiana de Gastroenterologia, 35, 5–16. https://doi.org/10.22516/25007440.543

Oliveira, P., & Pina e Cunha, M. (2021). Centralized Decenttralization, or Distributed Leadership as Paradox: The Case of the Patient Innovation's COVID-19 Portal. Journal of Change Management, 21(2): 203-221. https://doi.org/10.1080/14697017.2021.1917493

Pérez Milian, J. M., Berrio Aguila, J. E., Ojeda, Y. P., Rodríguez Quesada, N. Y., Fernández Pérez, S. E., & Aranguren Torriente, D. (2020). Evaluación de la satisfacción de pacientes atendidos por la COVID-19 en el Hospital Universitario Clínico Quirúrgico Cmdte. Manuel Fajardo Rivero. Medicentro (Villa Clara), 24(3), 630–641.

Prieto Rodríguez, M. Á., March Cerdá, J. C., Martín Barato, A., Escudero Carretero, M., López Doblas, M., & Luque Martín, N. (2020). Repercusiones del confinamiento por COVID-19 en pacientes crónicos de Andalucía. Gaceta sanitaria, S0213-9111(20)30251-X. https://doi.org/10.1016/j.gaceta.2020.11.001

Ramírez-Pereira, M., Pérez Abarca, R., & Machuca-Contreras, F. (2020). Políticas públicas de promoción de salud en el contexto del Covid-19, en Chile, una aproximación desde el análisis. Global Health Promotion, 0(0), 1–10. https://doi.org/10.1177/1757975920978311

Schwartz, I. V. D., Randon, D. N., Monsores, N., Moura de Souza, C. F., Horovitz, D. D. G., Wilke, M. V. M. B., & Brunoni, D. (2021). SARS-CoV-2 pandemic in the Brazilian community of rare diseases: A patient reported survey. American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, January, 1–11. https://doi.org/10.1002/ajmg.c.31883

Talarico, R., Aguilera, S., Alexander, T., Amoura, Z., Antunes, A. M., Arnaud, L., Avcin, T., Beretta, L., Bombardieri, S., Burmester, G. R., Cannizzo, S., Cavagna, L., Chaigne, B., Cornet, A., Costedoat-Chalumeau, N., Doria, A., Ferraris, A., Fischer-Betz, R., Fonseca, J. E., … Mosca, M. (2021). The impact of COVID-19 on rare and complex connective tissue diseases: the experience of ERN ReCONNET. In Nature Reviews Rheumatology (Vol. 17, Issue 3, pp. 177–184). Nature Research. https://doi.org/10.1038/s41584-020-00565-z

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Published

2021-12-22

How to Cite

Guerra, J. M., Esteban-Bueno, G., & Coca, J. R. (2021). Impact on the activity of rare disease organisations and their relatives during the COVID-19 containment in Spain. Acciones E Investigaciones Sociales, 1(42). https://doi.org/10.26754/ojs_ais/ais.2021426230

Issue

No. 42 (2021)

Section

Articles

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Copyright (c) 2021 José Manuel Guerra, Gema Esteban-Bueno, Juan R. Coca

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