Impact Of COVID-19 Pandemic On Health Status Of Haemophilia Patients In Yunnan Province

Objective:1.To evaluate the impact of COVID-19 pandemic on haemophilia patients in Yunnan Province.2.To analyze changes in physical symptoms and ways of life of haemophilia patients during COVID-19 outbreak compare to before outbreak period in Yunnan Province.3.To determine quality of health states and on-demand adherence to clotting factor for episodic treatment during COVID-19 outbreak in Yunnan Province.Methods:This study was a cross-sectional study and part of national survey.The purpose of this study is to assess and understand the impact of COVID-19 on health status of haemophilia patients during outbreak period in China(23 January-22 April).We used an online-based questionnaire which was developed and distributed via We-chat.This survey collected data on demographic and clinical information,worries,concerns,struggle and experiences regarding medical care during COVID-19 pandemic in Yunnan Province.We included previously validated questionnaire EQ-5D-5L for health status assessments and VERITAS-PRN(Validated Haemophilia Regimen Treatment Adherence Scale-On-Demand)for measurement of on-demand adherence.Invitation for participation were send describing the purpose of study with title"Investigation of the health status of haemophilia patients during the SARS-CoV-2 outbreak".The participant were haemophilia patients from Yunnan province with no age restriction for participation.Results:A total of 196,male individuals with Haemophilia disease from Yunnan province responded to the survey.88.8%had Haemophilia A and 11.2%had Haemophilia B.The majority of participants 21.9%were of age group 13-20 years,33.7%of the participants had education level of primary school and below,49.5%had income below 1000 yuan.8.2%had positive inhibitor,64.8%had target joints(same joint bleeding≥3 times within 3 months).99%had no conformed/Suspected case of COVID-19 in community.60.2%participants reported problems in at least one dimension of EQ-5D-5L,while 39.8%had no problem in any dimension.The most frequently reported problem was pain/discomfort 82.7%,followed by anxiety/depression 66.8%.The mean EQ-VAS score before pandemic was 68.5±25.7,while during pandemic was 64.8±27.0.The mean total VERITAS-PRN score was 68.8±10.2 with subscale mean scores ranging from 9.4 for Dose to 14.4 for Remember.56.6%patients had significantly less activity level,95.4%had psychological effect,11.7%had aggravated symptoms which was more significant than before,36.4%paid more attention and took measures such as reducing bad habits,using protective equipment to protect their joints and reduce bleeding than usual.There is statistically significant difference between the change in level of knowledge about haemophilia diagnosis and treatment during and before COVID-19.Conclusion:This study provides a general overview of the impact of COVID-19 on haemophilia patients during pandemic compare to before pandemic period.This pandemic had negative impacts on haemophilia patients of Yunnan province both directly and indirectly,it has increased thoughts and worries among them.