Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19

Faccio, Elena; Bottecchia, Matteo; Rocelli, Michele

doi:10.3390/ijerph20196863

Open AccessSystematic Review

Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19

by

Elena Faccio

^*,†

,

Matteo Bottecchia

^†

and

Michele Rocelli

^†

Department of Philosophy, Sociology, Education and Applied Psychology, University of Padua, 35139 Padova, Italy

^*

Author to whom correspondence should be addressed.

^†

Authors share first authorship.

Int. J. Environ. Res. Public Health 2023, 20(19), 6863; https://doi.org/10.3390/ijerph20196863

Submission received: 30 June 2023 / Revised: 20 September 2023 / Accepted: 26 September 2023 / Published: 29 September 2023

(This article belongs to the Special Issue Changes in Psychic Life and Psychological Treatments during COVID-19 Pandemic)

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Abstract

The COVID-19 pandemic took a toll on everyone’s lives, and patients with rare diseases (RDs) had to pay an even higher price. In this systematic review, we explored the impact of the COVID-19 pandemic on individuals with RDs from a psychological perspective. Using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, we retrieved articles from the Google Scholar, Scopus, and PubMed databases focusing on ‘COVID-19,’ ‘psychology,’ and ‘rare diseases.’ Seventeen primary articles were identified (mainly from continental Europe). The results revealed the psychological effects of the pandemic on rare disease patients, including increased anxiety, stress, and depressive moods. This review also highlighted the increased vulnerability and reduced quality of life of rare disease patients during the pandemic, as well as the importance of telecare and psychological support as critical interventions for improving their well-being. There is an urgent need for multidisciplinary research and stronger healthcare systems to meet the unique challenges of rare disease patients, who represent 3.5–5.9% of the global population.

Keywords: COVID-19; rare diseases; healthcare; psychological wellness

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MDPI and ACS Style

Faccio, E.; Bottecchia, M.; Rocelli, M. Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19. Int. J. Environ. Res. Public Health 2023, 20, 6863. https://doi.org/10.3390/ijerph20196863

AMA Style

Faccio E, Bottecchia M, Rocelli M. Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19. International Journal of Environmental Research and Public Health. 2023; 20(19):6863. https://doi.org/10.3390/ijerph20196863

Chicago/Turabian Style

Faccio, Elena, Matteo Bottecchia, and Michele Rocelli. 2023. "Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19" International Journal of Environmental Research and Public Health 20, no. 19: 6863. https://doi.org/10.3390/ijerph20196863

APA Style

Faccio, E., Bottecchia, M., & Rocelli, M. (2023). Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19. International Journal of Environmental Research and Public Health, 20(19), 6863. https://doi.org/10.3390/ijerph20196863

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Caring for People with Rare Diseases: A Systematic Review of the Challenges of, and Strategies for Dealing with, COVID-19

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