The impact of COVID-19 pandemic on dermatology patients with rare skin diseases
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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;382:727-733.
Martora F, Fabbrocini G, Nappa P, et al. 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:e237-e238.
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;16:61.
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;59:266.
Soussand L, Kuchenbuch M, Messiaen C, et al. 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;17:430.
Chung CC, Wong WH, Fung JL, et al. Impact of COVID-19 pandemic on patients with rare disease in Hong Kong. Eur J Med Genet 2020;63:104062.
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) p.39.
Roberts S. COVID-19 community survey report. In: National Organization for Rare Disorders (2020). Available from: https://rarediseases.org/COVID-19-community-surveyreport/ (accessed on 15th October 2020).
Rare disease Ireland. Living With a Rare Disease in Ireland During the COVID-19 Pandemic (2020). Available from: http://rdi.ie/wp-content/uploads/2020/05/Research-Report- Living-with-a-rare-disease-in-Ireland-during-the-COVID-19-pandemic.pdf (accessed on 3rd February 2021).
APARDO. Managing Rare Diseases in APAC During COVID-19 (2020); Available from: https://www.rarediseasesinternational.org/wp-content/uploads/2020/09/APARDO-summaryand-call-to-action_R4.pdf .
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.
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:e062126.
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;28:165-173.
Kuo TC, Wang PH, Wang YK, et al. RSDB: A rare skin disease database to link drugs with potential drug targets for rare skin diseases. Sci Data 2022;9:521.
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;18:154.
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;15:315.
NIH. NIH Funding Bolsters Rare Diseases Research Collaborations. (2019). Available from: https:https://ncats.nih.gov/news-events/events/2019/rdcrn-funding#:~:text=To%20increase%20that%20percentage%2C%20the,wide%20range%20of%20rare%20diseases. (accessed on 15th October 2020).
Rare Barometer. How has COVID-19 impacted people with rare diseases? (2020). Available from: https://download2.eurordis.org/rbv/COVID19survey/COVID_infographics_final.pdf
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;17:166.
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;16:361.
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