Background: The coronavirus disease-19 (COVID-19) pandemic has significantly affected healthcare systems. Down syndrome (DS) is a chronic disease caused by trisomy of chromosome 21 which is associated with a variety of medical problems such as autoimmune thyroid disease (AITD) that necessitate comprehensive routine treatment. During the COVID-19 pandemic, there was an increasing an unavailability, which became an impediment to chronic disease patients’ drug consumption. Objectives: The purpose of this study was to examine the barriers to medication adherence faced by DS patients during the COVID-19 pandemic. Methods: An observational analytic study was conducted from January to July 2021 among parents of DS patients who registered in the pediatric endocrinology outpatient clinic of Dr. Soetomo General Hospital. Inclusion criteria include: The parents of DS with AITD patients aged 1-18 years who came to the pediatric endocrinology polyclinic, routinely took oral medication before March 2020, can fill out questionnaire forms independently, and signed the informed consent. Exclusion criteria were parents of DS patients who did not take regular medication, or started treatment after March 2020. Data were collected and analyzed using the Wilcoxon comparison test Results: There are 31 DS patients responded and completed the questionnaires. Adherence to hospital visits in DS with AITD patients before and during the COVID-19 pandemic showed significant differences (P = 0.001). The main barriers to follow-up visits during the pandemic were lockdown protocol which made travel difficult (28%). The compliance for taking medication was still high although 13 (41.9%) obtained the medicine without a prescription. Conclusions: Changes in terms of medication adherence during the pandemic have highlighted the importance of improving DS patient’s access to healthcare. Shifting medication counseling to the nearest primary health care provider with supervision from a tertiary referral specialist appears to be a reasonable and potentially cost-effective strategy in improving treatment adherence especially in a pandemic setting.

Original languageEnglish
Article numbere134122
JournalJournal of Comprehensive Pediatrics
Issue number2
Publication statusPublished - May 2023


  • Autoimmune thyroid disease
  • COVID-19
  • Chronic Disease Management
  • Down Syndrome
  • Lockdown
  • Medication Adherence


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