Yıl: 2021 Cilt: 8 Sayı: 4 Sayfa Aralığı: 370 - 376 Metin Dili: İngilizce DOI: 10.4274/jpr.galenos.2020.98250 İndeks Tarihi: 17-01-2022

The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders

Öz:
Aim: The coronavirus disease-2019 (COVID-19) pandemic has caused a worldwide public health emergency, especially affecting people with chronic illnesses including lysosomal storage disorders (LSDs). The unfavorable conditions due to COVID-19 have mostly affected people with chronic conditions, in terms of disease vulnerability and access to health-care. In the present study, we aimed to assess the problems the patients with LSDs on enzyme replacement therapy (ERT) have encountered during the pandemic, and their level of anxiety. Parental evaluation has also been made for pediatric patients. Materials and Methods: A total of 19 participants were recruited. A semi-structured interview was structured to evaluate the effects of the COVID-19 pandemic on ERT. The Turkish version of “Hospital Anxiety and Depression scale” (HADS) for adult patients and parents were used to evaluate anxiety. Patients between ages 8-17 completed the child version of the Revised Child Anxiety and Depression scale (RCADS). Results: The study was completed by 19 patients, and 13 parents. Five patients (26%) admitted temporary disruption of treatment, of which the most common reason was the fear of getting infected. Eighty-nine percent of all participants were willing to receive treatment at home. Only one adult patient revealed to feel anxiety (16%). While among parents evaluated with HADS, 7/13 had scores that indicated depression and anxiety, 3/4 pediatric patients had RCADS scores indicative of anxiety and depression. Conclusion: The problems LSD patients have been facing during the pandemic, should be identified along with their attitudes regarding ERT in order to maintain the sustainability of their treatment. The psychological health of these patients should also be identified and supported, to provide optimal care to patients.
Anahtar Kelime:

Belge Türü: Makale Makale Türü: Araştırma Makalesi Erişim Türü: Erişime Açık
  • 1. WHO coronavirus (COVID-19) dashboard [Internet]. World Health Organ; 2020. [cited 2020 May 31]. Available from: https://who.sprinklr.com/.
  • 2. Oni T, Micklesfield LK, Wadende P, et al. Implications of COVID- 19 control measures for diet and physical activity, and lessons for addressing other pandemics facing rapidly urbanizing countries. Glob Health Action 2020; 13:1810415.
  • 3. https://www.nhsinform.scot/illnesses-and-conditions/ infections-and-poisoning/coronavirus-covid-19/coronaviruscovid- 19-shielding.
  • 4. Elmonem MA, Belanger-Quintana A, et al. The impact of COVID-19 pandemic on the diagnosis and management of inborn errors of metabolism: A global perspective. Mol Genet Metab 2020;25:S1096-7192:30195-5.
  • 5. Solomon M, Muro S. Lysosomal enzyme replacement therapies: Historical development, clinical outcomes, and future perspectives. Adv Drug Deliv Rev 2017; 118:109-34.
  • 6. Kanzaki M, Tsukimura T, Chiba Y, Sakuraba H, Togawa T. Surface plasmon resonance analysis of complex formation of therapeutic recombinant lysosomal enzymes with domain 9 of human cation-independent mannose 6-phosphate receptor. Mol Genet Metab Rep 2020;21;25:100639.
  • 7. Chorpita BF, Yim L, Moffitt C, et al. Assessment of symptoms of DSM-IV anxiety and depression in children: a Revised Child Anxiety and Depression Scale. Behav Res Ther 2000; 38:835-55.
  • 8. Gormez V, Kilincaslan A, Ebesutani C, et al. Psychometric Properties of the Parent Version of the Revised Child Anxiety and Depression Scale in a Clinical Sample of Turkish Children and Adolescents. Child Psychiatry Hum Dev 2017; 48:922-33.
  • 9. Gormez V, Kılınçaslan A, Orengul AC, et al. Psychometric properties of the Turkish version of the Revised Child Anxiety and Depression Scale - Child Version in a clinical sample, Psychiatry and Clinical Psychopharmacology 2017; 27:84-92.
  • 10. Aydemir O. Validity and Reliability of Turkish Version of Hospital Anxiety and Depression Scale. Turkish Journal of Psychiatry 1997; 8:280-87.
  • 11. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica 1983; 67:361-70.
  • 12. Andrade-Campos MM, de Frutos LL, Ceblalla JJ, et al. Identification of risk features for complication in Gaucher’s disease patients: a machine learning analysis of the Spanish registry of Gaucher disease. Orphanet J Rare Dis 2020; 15:256.
  • 13. Miller K, McGrath ME, Hu Z, et al. Coronavirus interactions with the cellular autophagy machinery. Autophagy. 2020:1-9. Online ahead of print.
  • 14. Mistry P, Balwani M, Barbouth D, et al. Gaucher disease and SARS-CoV-2 infection: Emerging management challenges. Mol Genet Metab. 2020; 130:164-69.
  • 15. Politei J. Fabry disease during the COVID-19 pandemic. Why and how treatment should be continued. Mol Genet Metab 2020; 130:227-29.
  • 16. Sechi A, Macor D, Valent S, et al. Impact of COVID-19 related healthcare crisis on treatments for patients with lysosomal storage disorders, the first Italian experience. Mol Genet Metab. 2020; 130:170-71.
  • 17. Ademhan Tural D, Emiralioglu N, Tural Hesapcioglu S, et al. Psychiatric and general health effects of COVID-19 pandemic on children with chronic lung disease and parents’ coping styles. Pediatr Pulmonol 2020;18. Epub ahead of print.
  • 18. Fiumara A, Lanzafame G, Arena A, et al. COVID-19 Pandemic Outbreak and its Psychological Impact on Patients with Rare Lysosomal Diseases. J Clin Med 2020; 9:E2716.
APA Olgac A, Kasapkara Ç, Açıkel B, YILDIZ Y, Karakaya molla G, Kılıç M (2021). The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. , 370 - 376. 10.4274/jpr.galenos.2020.98250
Chicago Olgac Asburce,Kasapkara Çiğdem,Açıkel Burak,YILDIZ YILMAZ,Karakaya molla Gülhan,Kılıç Mustafa The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. (2021): 370 - 376. 10.4274/jpr.galenos.2020.98250
MLA Olgac Asburce,Kasapkara Çiğdem,Açıkel Burak,YILDIZ YILMAZ,Karakaya molla Gülhan,Kılıç Mustafa The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. , 2021, ss.370 - 376. 10.4274/jpr.galenos.2020.98250
AMA Olgac A,Kasapkara Ç,Açıkel B,YILDIZ Y,Karakaya molla G,Kılıç M The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. . 2021; 370 - 376. 10.4274/jpr.galenos.2020.98250
Vancouver Olgac A,Kasapkara Ç,Açıkel B,YILDIZ Y,Karakaya molla G,Kılıç M The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. . 2021; 370 - 376. 10.4274/jpr.galenos.2020.98250
IEEE Olgac A,Kasapkara Ç,Açıkel B,YILDIZ Y,Karakaya molla G,Kılıç M "The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders." , ss.370 - 376, 2021. 10.4274/jpr.galenos.2020.98250
ISNAD Olgac, Asburce vd. "The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders". (2021), 370-376. https://doi.org/10.4274/jpr.galenos.2020.98250
APA Olgac A, Kasapkara Ç, Açıkel B, YILDIZ Y, Karakaya molla G, Kılıç M (2021). The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. The Journal of Pediatric Research, 8(4), 370 - 376. 10.4274/jpr.galenos.2020.98250
Chicago Olgac Asburce,Kasapkara Çiğdem,Açıkel Burak,YILDIZ YILMAZ,Karakaya molla Gülhan,Kılıç Mustafa The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. The Journal of Pediatric Research 8, no.4 (2021): 370 - 376. 10.4274/jpr.galenos.2020.98250
MLA Olgac Asburce,Kasapkara Çiğdem,Açıkel Burak,YILDIZ YILMAZ,Karakaya molla Gülhan,Kılıç Mustafa The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. The Journal of Pediatric Research, vol.8, no.4, 2021, ss.370 - 376. 10.4274/jpr.galenos.2020.98250
AMA Olgac A,Kasapkara Ç,Açıkel B,YILDIZ Y,Karakaya molla G,Kılıç M The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. The Journal of Pediatric Research. 2021; 8(4): 370 - 376. 10.4274/jpr.galenos.2020.98250
Vancouver Olgac A,Kasapkara Ç,Açıkel B,YILDIZ Y,Karakaya molla G,Kılıç M The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders. The Journal of Pediatric Research. 2021; 8(4): 370 - 376. 10.4274/jpr.galenos.2020.98250
IEEE Olgac A,Kasapkara Ç,Açıkel B,YILDIZ Y,Karakaya molla G,Kılıç M "The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders." The Journal of Pediatric Research, 8, ss.370 - 376, 2021. 10.4274/jpr.galenos.2020.98250
ISNAD Olgac, Asburce vd. "The COVID-19 Pandemic and Enzyme Replacement Therapy in Lysosomal Storage Disorders". The Journal of Pediatric Research 8/4 (2021), 370-376. https://doi.org/10.4274/jpr.galenos.2020.98250