The impact of COVID-19 pandemic on dermatology patients with rare skin diseases


Published: 2 February 2024
Abstract Views: 90
PDF: 67
Publisher's note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Authors

The COVID-19 pandemic has caused a global health crisis, presenting novel challenges while worsening preexisting difficulties for individuals with rare diseases. Internationally, they have experienced disruptions in their medical care, with a lack of access to essential treatments and diagnostics. We focused on the specific challenges faced by individuals living with rare skin diseases in Albania, a country with limited healthcare infrastructure. The pandemic led to a significant decrease in our service, resulting in an 87.1% reduction in patients hospitalized in 2020 compared to 2019. Notable gender and age disparities were observed in hospitalizations, with a shift towards more male patients and a decline in younger age groups seeking medical attention. Innovative approaches such as telemedicine helped maintain care for this vulnerable patient population. Further research is required to understand the long-term impacts of the pandemic on individuals with rare skin diseases and develop strategies for their care in future emergencies.


Zhu N, Zhang D, Wang W, et al. A Novel Coronavirus from Patients with Pneumonia in China, 2019. N Engl J Med. 2020;382(8):727-733. doi:10.1056/NEJMoa2001017 DOI: https://doi.org/10.1056/NEJMoa2001017

Martora F, Fabbrocini G, Nappa P, Megna M. Impact of the COVID-19 pandemic on hospital admissions of patients with rare diseases: an experience of a Southern Italy referral center. Int J Dermatol. 2022;61(7):e237-e238. doi:10.1111/ijd.1623 DOI: https://doi.org/10.1111/ijd.16236

Radtke HB, Klein-Tasman BP, Merker VL, et al. The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research. Orphanet J Rare Dis. 2021;16(1):61. Published 2021 Feb 1. doi:10.1186/s13023-021-01711-w DOI: https://doi.org/10.1186/s13023-021-01711-w

Sintila SA, Boziki M, Bakirtzis C, et al. The Experience of a Tertiary Reference Hospital in the Study of Rare Neurological Diseases. Medicina (Kaunas). 2023;59(2):266. Published 2023 Jan 30. doi:10.3390/medicina59020266 DOI: https://doi.org/10.3390/medicina59020266

Soussand L, Kuchenbuch M, Messiaen C, Sandrin A, Jannot AS, Nabbout R. Impact of the COVID-19 pandemic on the care of rare and undiagnosed diseases patients in France: a longitudinal population-based study. Orphanet J Rare Dis. 2022;17(1):430. Published 2022 Dec 9. doi:10.1186/s13023-022-02580-7 DOI: https://doi.org/10.1186/s13023-022-02580-7

Chung CC, Wong WH, Fung JL, Hong Kong RD, Chung BH. Impact of COVID-19 pandemic on patients with rare disease in Hong Kong. Eur J Med Genet. 2020;63(12):104062. doi:10.1016/j.ejmg.2020.104062 DOI: https://doi.org/10.1016/j.ejmg.2020.104062

Taruscio D, Bertinato L, Carta C. Censimento dei bisogni (23 marzo−5 aprile 2020) delle persone con malattie rare in corso di pandemia da SARS-CoV-2. Rapporto ISS COVID-19 n. Rome: ISS Press Office (2020). 39p.

Roberts S. COVID-19 community survey report. In: National Organization for Rare Disorders. (2020). Available online at: https://rarediseases.org/covid-19-community-survey-report/ (accessed October 15, 2020)

Rare disease Ireland. Living With a Rare Disease in Ireland During the COVID-19 Pandemic. (2020). Available online at: http://rdi.ie/wp-content/uploads/2020/05/Research-Report-Living-with-a-rare-disease-in-Ireland-during-the-COVID-19-pandemic.pdf (accessed February 3, 2021).

APARDO. Managing Rare Diseases in APAC During COVID-19. (2020). Available online at: https://www.rarediseasesinternational.org/wp-content/uploads/2020/09/APARDO-summary-and-call-to-action_R4.pdf (accessed February 3, 2021).

Chowdhury SF, Sium SMA, Anwar S. Research and Management of Rare Diseases in the COVID-19 Pandemic Era: Challenges and Countermeasures. Front Public Health. 2021;9:640282. Published 2021 Apr 15. doi:10.3389/fpubh.2021.640282 DOI: https://doi.org/10.3389/fpubh.2021.640282

Abozaid GM, Kerr K, McKnight A, Al-Omar HA. Criteria to define rare diseases and orphan drugs: a systematic review protocol. BMJ Open. 2022;12(7):e062126. Published 2022 Jul 29. doi:10.1136/bmjopen-2022-062126 DOI: https://doi.org/10.1136/bmjopen-2022-062126

Nguengang Wakap S, Lambert DM, Olry A, et al. Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database. Eur J Hum Genet. 2020;28(2):165-173. doi:10.1038/s41431-019-0508-0 DOI: https://doi.org/10.1038/s41431-019-0508-0

Kuo TC, Wang PH, Wang YK, Chang CI, Chang CY, Tseng YJ. RSDB: A rare skin disease database to link drugs with potential drug targets for rare skin diseases. Sci Data. 2022;9(1):521. Published 2022 Aug 26. doi:10.1038/s41597-022-01654-2 DOI: https://doi.org/10.1038/s41597-022-01654-2

Zybarth D, Brandt M, Mundlos C, Inhestern L. Impact of the COVID-19 pandemic on health care and daily life of patients with rare diseases from the perspective of patient organizations - a qualitative interview study. Orphanet J Rare Dis. 2023;18(1):154. Published 2023 Jun 21. doi:10.1186/s13023-023-02771-w DOI: https://doi.org/10.1186/s13023-023-02771-w

McMullan J, Crowe AL, Bailie C, et al. Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate. Orphanet J Rare Dis. 2020;15(1):315. Published 2020 Nov 9. doi:10.1186/s13023-020-01559-6 DOI: https://doi.org/10.1186/s13023-020-01559-6

NIH. NIH Funding Bolsters Rare Diseases Research Collaborations. (2019). Available online at: https://www.nih.gov/news-events/news-releases/nih-funding-bolsters-rare-diseases-research collaborations#:~:text=Of%20an%20estimated%206%2C500%20to,and%20Drug%20Administration%2Dapproved%20treatments (Accessed October 15, 2020).

Rare Barometer. How has COVID-19 impacted people with rare diseases? https://download2.eurordis.org/rbv/covid19survey/covid_infographics_final.pdf (2020).

Zhang H, Thygesen JH, Shi T, et al. Increased COVID-19 mortality rate in rare disease patients: a retrospective cohort study in participants of the Genomics England 100,000 Genomes project. Orphanet J Rare Dis. 2022;17(1):166. Published 2022 Apr 12. doi:10.1186/s13023-022-02312-x DOI: https://doi.org/10.1186/s13023-022-02312-x

Chung CCY, Wong WHS, Chung BHY. Hospital mortality in patients with rare diseases during pandemics: lessons learnt from the COVID-19 and SARS pandemics. Orphanet J Rare Dis. 2021;16(1):361. Published 2021 Aug 12. doi:10.1186/s13023-021-01994-z DOI: https://doi.org/10.1186/s13023-021-01994-z

Vargu, M., Dedej, S., & Vasili, E. (2024). The impact of COVID-19 pandemic on dermatology patients with rare skin diseases. Dermatology Reports. https://doi.org/10.4081/dr.2024.9879

Downloads

Download data is not yet available.

Citations