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COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases
Background: Lysosomal storage disorders (LSDs) are rare, chronic, progressive multisystem diseases implying severe medical issues and psychological burden. Some of these disorders are susceptible to a treatment, which is administered weekly or every other week, in a hospital. During the COVID-19 (Co...
Autores principales: | , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
MDPI
2020
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7563156/ https://www.ncbi.nlm.nih.gov/pubmed/32842622 http://dx.doi.org/10.3390/jcm9092716 |
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author | Fiumara, Agata Lanzafame, Giuseppina Arena, Alessia Sapuppo, Annamaria Raudino, Federica Praticò, Andrea Pavone, Piero Barone, Rita |
author_facet | Fiumara, Agata Lanzafame, Giuseppina Arena, Alessia Sapuppo, Annamaria Raudino, Federica Praticò, Andrea Pavone, Piero Barone, Rita |
author_sort | Fiumara, Agata |
collection | PubMed |
description | Background: Lysosomal storage disorders (LSDs) are rare, chronic, progressive multisystem diseases implying severe medical issues and psychological burden. Some of these disorders are susceptible to a treatment, which is administered weekly or every other week, in a hospital. During the COVID-19 (Corona Virus Disease 2019) pandemic lockdown, patients with LSDs on enzyme replacement therapy (ERT) missed their scheduled access to the Day Hospital to get their treatment. Methods: Based on the feeling that our patients were experiencing profound distress, we designed a structured telephone interview with the aim to evaluate how, and to which extent, the pandemic outbreak was changing their behavior and feelings about their chronic disease, the impact on therapies, and future expectations. The same interview was administered to an age-matched control group. Results: All interviewed people experienced an increase of anxiety, worries, and uncertainty fostered by incessant media updates. Moreover, a striking similarity emerged between the groups regarding forced home reclusion and the profound feeling to be excluded by normal life, well-known to those affected by a chronic rare disease. Conclusions: Although no statistically significant difference was found compared to controls, we felt that the reactions were qualitatively different, underlining the fragility and isolation of such patients. |
format | Online Article Text |
id | pubmed-7563156 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | MDPI |
record_format | MEDLINE/PubMed |
spelling | pubmed-75631562020-10-27 COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases Fiumara, Agata Lanzafame, Giuseppina Arena, Alessia Sapuppo, Annamaria Raudino, Federica Praticò, Andrea Pavone, Piero Barone, Rita J Clin Med Article Background: Lysosomal storage disorders (LSDs) are rare, chronic, progressive multisystem diseases implying severe medical issues and psychological burden. Some of these disorders are susceptible to a treatment, which is administered weekly or every other week, in a hospital. During the COVID-19 (Corona Virus Disease 2019) pandemic lockdown, patients with LSDs on enzyme replacement therapy (ERT) missed their scheduled access to the Day Hospital to get their treatment. Methods: Based on the feeling that our patients were experiencing profound distress, we designed a structured telephone interview with the aim to evaluate how, and to which extent, the pandemic outbreak was changing their behavior and feelings about their chronic disease, the impact on therapies, and future expectations. The same interview was administered to an age-matched control group. Results: All interviewed people experienced an increase of anxiety, worries, and uncertainty fostered by incessant media updates. Moreover, a striking similarity emerged between the groups regarding forced home reclusion and the profound feeling to be excluded by normal life, well-known to those affected by a chronic rare disease. Conclusions: Although no statistically significant difference was found compared to controls, we felt that the reactions were qualitatively different, underlining the fragility and isolation of such patients. MDPI 2020-08-22 /pmc/articles/PMC7563156/ /pubmed/32842622 http://dx.doi.org/10.3390/jcm9092716 Text en © 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/). |
spellingShingle | Article Fiumara, Agata Lanzafame, Giuseppina Arena, Alessia Sapuppo, Annamaria Raudino, Federica Praticò, Andrea Pavone, Piero Barone, Rita COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases |
title | COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases |
title_full | COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases |
title_fullStr | COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases |
title_full_unstemmed | COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases |
title_short | COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases |
title_sort | covid-19 pandemic outbreak and its psychological impact on patients with rare lysosomal diseases |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7563156/ https://www.ncbi.nlm.nih.gov/pubmed/32842622 http://dx.doi.org/10.3390/jcm9092716 |
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