Abstract
ObjectiveIt is known that there were transportation problems to the hospital and treatment experienced in many disease groups during the pandemic process. The negative impact of the pandemic is particularly evident in chronic diseases and in situations that require continuous treatment. In this study, data on access to treatment and disease status in patients with bleeding diathesis were collected by questionnaire method, and the effects of the pandemic on these patients were determined.MethodologyFifty patients who were followed up in Istanbul Medical Faculty Pediatric Hematology-Oncology Department between 2010-2022 with the diagnosis of bleeding diathesis and accepted to participate in the survey were included in the study. Questions were answered by telephone. Responses were analyzed using SPSS.ResultsThe mean age of the patients in our study was 13 years, the age range was between 2-26 years. The median age was 13. Of these patients, 44 (88%) were male and 6 (12%) were female. 88% of the patients were diagnosed with Hemophilia A, 12% with Hemophilia B. While 56% of the patients were receiving prophylaxis for the treatment of hemophilia, 44% were receiving treatment in case of bleeding. Sixtyfour percent of the patients went to a health institution or doctor once every 1-3 months, 18% every 6 months, 6% once a year for control and follow-up purposes. The last drug or dose change was made 0-6 months ago in 16% of the patients, 7-12 months ago in 4%, and 22% 1-2 years ago. However, in 6%, more than 2 years had passed since the last change, and 42% did not change. Serious psychiatric problems were observed in our two patients. Fear of death and anxiety disorder has been seen in a 10-year-old patient. During this period, severe hyperactivity developed in 1 patient.While 10% of the patients interrupted their treatment in the last 3-4 months, 90% did not. The reason for the disruption of the patients who interrupt their treatment is Covid infection in 20% and the drug cannot be obtained in 40%. While 94% of the patients had no problem in the supply of the drug due to the Covit-19 pandemic, 6% had a problem in the supply of the drug.While 33% of the patients who had problems in the supply of the drug received support from their doctor, 33% from the patient association to solve the problem, 33% did not receive any support from anyone. Among the reasons for having problems in the administration of the drug, 33% of the patients did not go to the hospital because they were afraid of the pandemic, 33% of them could not get treatment even though they went to the hospital, and 33% of them other reasons were reported.While 48% of the patients want an experienced health personnel to go to their home to perform their treatment, 52% do not want it, stating that they do not need it. None of the patients whose treatment was interrupted did not complain of bleeding during this period.ConclusionIt was seen that the patients experienced disruptions related to access to medication and treatment during the pandemic process. However, there were no major problems in this process, thanks to the help of their physicians and other institutions. It is important to emphasize the importance of treatment in hemophilia patients and to have easy communication with the center followed in order to overcome the pandemic process without complications.
Published Version
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