Barriers to prophylactic treatment among patients with haemophilia A in Shandong Province, China: a qualitative study

Orphanet Journal of Rare Diseases

Research

Ziyu Liu¹  Junchao Feng¹  Shunping Li¹  Yunhai Fang²  Yan Cheng² 

[1] Centre for Health Management and Policy Research, School of Public Health, Cheeloo College of Medicine, Shandong University, 250012, Jinan, China;NHC Key Lab of Health Economics and Policy Research, Shandong University, 250012, Jinan, China;Centre for Health Preference Research, Shandong University, 250012, Jinan, China;Shandong Blood Center, Shandong Haemophilia Treatment Center, Jinan, China;

关键词: Haemophilia A;    Prophylactic treatment;    Barriers;    Adherence;    China;   

DOI  :  10.1186/s13023-023-02838-8

 received in 2022-07-31, accepted in 2023-07-21,  发布年份 2023

来源: Springer

【 摘 要 】

BackgroundHaemophilia A is a rare, hereditary haemorrhagic disease that manifests as induced spontaneous bleeding and leads to disability or premature death in severe cases. Prophylactic treatment is optimal for patients to prevent uncontrolled bleeding and reduce the severity of the injury. However, little is known about the use of prophylactic treatment among patients with haemophilia A in China, especially barriers that predispose them to low or non-adherence. In this study, we explore the barriers to the prophylactic treatment of patients with haemophilia A.MethodWe used personal interviews and focus groups to collect the data and analysed the data through thematic analysis. Purposive sampling was employed to recruit our participants. We continued recruiting participants until data saturation was reached from the thematic analysis. Ultimately, we obtained 37 participants, among whom 19 participated in personal interviews and 18 participated in focus groups (i.e., 3 focus groups with 6 participants each).ResultsThree themes and nine subthemes were identified from the thematic analysis. Nine subthemes (i.e., perceived barriers) emerged from the analysis, which were further clustered into three themes: (1) poor primary health care, (2) inadequate financial support, and (3) a lack of patient-centred care.ConclusionThe findings presented in this descriptive qualitative study offer a unique view of Chinese patients with haemophilia A and their barriers to prophylactic treatment. Our findings not only provide an in-depth understanding of barriers to prophylactic treatment encountered by Chinese patients with haemophilia A but also address the urgent need to strengthen primary care, provide adequate financial support, and establish patient-centred care for these suffering patients.

【 授权许可】

CC BY   
© Institut National de la Santé et de la Recherche Médicale (INSERM) 2023