Experience and impact of stigma in people with chronic hepatitis B: a qualitative study in Asia, Europe, and the United States

被引:13
作者
Toumi, Mondher [1 ,24 ]
Wallace, Jack [2 ]
Cohen, Chari [3 ]
Marshall, Chris [4 ]
Kitchen, Helen [4 ]
Macey, Jake [4 ]
Pegram, Hannah [4 ]
Slagle, Ashley F. [5 ]
Gish, Robert G. [3 ]
Ning, Qin [6 ]
Yatsuhashi, Hiroshi [7 ,8 ]
Cornberg, Markus [9 ]
Brunetto, Maurizia [10 ]
van Boemmel, Florian [11 ]
Xie, Qing [12 ]
Lee, Dee [13 ]
Habuka, Noriyuki [14 ]
Sbarigia, Urbano [15 ]
Beumont-Mauviel, Maria [16 ]
Keever, Angelina Villasis [17 ]
Takahashi, Yasushi [14 ]
Lu, Yiwei [18 ]
Liu, Ao [18 ]
Chen, Qiaoqiao [18 ]
Ito, Tetsuro [19 ]
Radunz, Olaf [20 ]
Puggina, Anna [21 ]
Hilgard, Gudrun [20 ]
Chan, Eric K. H. [22 ]
Wang, Su [3 ,23 ]
机构
[1] Aix Marseille Univ, 58 Bd Charles Livon, F-13284 Marseille 07, France
[2] Burnet Inst, 85 Commercial Rd, Melbourne, Vic 3004, Australia
[3] Hepatitis B Fdn, 3805 Old Easton Rd, Doylestown, PA 18902 USA
[4] Clarivate, 70 St Mary Axe, London EC3A 8BE, England
[5] Aspen Consulting LLC, 625 S Lincoln Ave 101, Steamboat Springs, CO 80487 USA
[6] Huazhong Univ Sci & Technol, Tongji Hosp, Tongji Med Coll, 1095 Jie Fang Ave, Wuhan 430030, Peoples R China
[7] Natl Hosp Org NHO Nagasaki Med Ctr, 2-1001-1 Kubara, Omura, Nagasaki 8568562, Japan
[8] Nagasaki Univ, Grad Sch Biomed Sci, 1-7-1 Sakamoto, Nagasaki 8528520, Japan
[9] Hannover Med Sch, Carl Neuberg Str 1, D-30625 Hannover, Germany
[10] Univ Hosp Pisa, Lungarno Pacinotti 43, I-56126 Pisa, Italy
[11] Univ Leipzig, Med Ctr, Dept Med 2, Div Hepatol, Liebigstr 20, D-04103 Leipzig, Germany
[12] Shanghai Jiao Tong Univ, Ruijin Hosp, Sch Med, 227 South Chongqing Rd, Shanghai 20025, Peoples R China
[13] Inno Community Dev Org, Dengzheng Business Ctr, Room 208,57 Dengzhengnan Rd, Guangzhou, Guangdong, Peoples R China
[14] Janssen Pharmaceut KK, 3-5-2 Nishi Kanda,Chiyoda Ku, Tokyo 1010065, Japan
[15] Janssen Pharmaceut NV, Turnhoutseweg 30, B-2340 Beerse, Belgium
[16] Janssen Res & Dev LLC, 1125 Trenton Harbourton Rd, Titusville, NJ 08560 USA
[17] Janssen Res & Dev, 1400 McKeon Rd, Spring House, PA 19002 USA
[18] Janssen China, 14F,Tower 3,China Cent Pl,77 Jian Guo Rd, Beijing 100025, Peoples R China
[19] Janssen Hlth Econ & Market Access EMEA, 50-100 Holmers Farm Way, High Wycombe HP12 4EG, Bucks, England
[20] Janssen Germany, Johnson u Johnson Pl 1, D-41470 Neuss, Nordrhein Westf, Germany
[21] Janssen Italy, Via Michelangelo Buonarroti 23, I-20093 Cologno Monzese, Italy
[22] Janssen Global Serv LLC, 1000 US 202, Raritan, NJ 08869 USA
[23] Cooperman Barnabas Med Ctr, 222 Columbia Turnpike, Florham Pk, NJ 07932 USA
[24] Aix Marseille Univ, Dept Publ Hlth, 27 Blvd Jean Moulin, F-13385 Marseille, France
关键词
Hepatitis B virus; Chronic Hepatitis B; Functional cure; Qualitative research; Self-stigma; Social impact; MENTAL-ILLNESS; HEALTH-CARE; INFECTION; MANAGEMENT; KNOWLEDGE;
D O I
10.1186/s12889-023-17263-6
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
BackgroundPeople with chronic hepatitis B (CHB) commonly experience social and self-stigma. This study sought to understand the impacts of CHB-related stigma and a functional cure on stigma.MethodsAdults with CHB with a wide range of age and education were recruited from 5 countries and participated in 90-minute qualitative, semi-structured interviews to explore concepts related to CHB-associated stigma and its impact. Participants answered open-ended concept-elicitation questions regarding their experience of social and self-stigma, and the potential impact of reduced CHB-related stigma.ResultsSixty-three participants aged 25 to 71 years (15 from the United States and 12 each from China, Germany, Italy, and Japan) reported emotional, lifestyle, and social impacts of living with CHB, including prejudice, marginalization, and negative relationship and work experiences. Self-stigma led to low self-esteem, concealment of CHB status, and social withdrawal. Most participants stated a functional cure for hepatitis B would reduce self-stigma.ConclusionsCHB-related social and self-stigma are widely prevalent and affect many aspects of life. A functional cure for hepatitis B may reduce social and self-stigma and substantially improve the health-related quality of life of people with CHB. Incorporating stigma into guidelines along with infectivity considerations may broaden the patient groups who should receive treatment.
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页数:14
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