社区卫生服务中心在血友病防治中作用
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摘要
社区卫生服务中心已成为我国城市公共卫生服务主体。血友病是一种隐性遗传病,目前以家庭治疗为主的防治还未广泛应用于血友病患者日常治疗。本研究系统分析社区卫生服务中心参与血友病患者防治研究现状,并给出相关建议。以"血友病""社区卫生服务""预防治疗""可行性研究"为关键词,全面检索PubMed、CNKI、万方数据库2003-09-01-2017-07-06发表的文献。纳入标准:(1)血友病预防治疗;(2)包含社区卫生服务中心的血友病研究,共纳入文献23篇,中文18篇,外文5篇,对文献有关内容进行分析整合。我国血友病预防治疗存在生存状况普遍低下、家庭治疗普及度不高和预防治疗基础性建设薄弱等问题,但社区卫生服务中心参与血友病患者预防治疗具有制度可行性、概念可行性、现实可行性和成本可行性。社区卫生服务中心参与血友病防治可以弥补其不足,并补充血友病治疗中心功能。在新医改政策指导下,如何使社区卫生服务中心职能与血友病患者预防治疗相结合,改善血友病患者生存状况,将成为进一步研究重点。
Community health service centers have become the main body of urban public health services in China.Hemophilia is a recessive hereditary disease.At present,preventive treatment based on family therapy has not been widely used in the daily treatment of hemophilia patients.This study aims to analyze the current situation of community health service centers participating in the prevention and treatment of hemophilia patients,and to give relevant suggestions.A comprehensive search of PubMed,CNKI and Wanfang database was conducted from September 1,2003 to January 6,2017 by using"hemophilia,community health services,prevention and treatment,feasibility study"as keywords.Inclusion criteria were:(1)prevention and treatment of hemophilia;(2)research on hemophilia involving community health service centers.A total of 23 articles(18 in Chinese and 5 in foreign)were included,analyzed and integrated of relevant literature content.There were some problems in the prevention and treatment of hemophilia in China,such as low living conditions,low popularity of family therapy and weak basic construction of prevention and treatment.However,the participation of community health service centers in prevention and treatment of hemophilia patients has institutional feasibility,conceptual feasibility,practical feasibility and cost feasibility.Community health service centers participating in hemophilia prevention and treatment can make up for their deficiencies and supplement the functions of hemophilia treatment center.How to integrate the functions of community health service centers with the prevention and treatment of hemophilia patients and improve the living conditions of hemophilia patients will become the focus of further research.
Community health service centers have become the main body of urban public health services in China.Hemophilia is a recessive hereditary disease.At present,preventive treatment based on family therapy has not been widely used in the daily treatment of hemophilia patients.This study aims to analyze the current situation of community health service centers participating in the prevention and treatment of hemophilia patients,and to give relevant suggestions.A comprehensive search of PubMed,CNKI and Wanfang database was conducted from September 1,2003 to January 6,2017 by using"hemophilia,community health services,prevention and treatment,feasibility study"as keywords.Inclusion criteria were:(1)prevention and treatment of hemophilia;(2)research on hemophilia involving community health service centers.A total of 23 articles(18 in Chinese and 5 in foreign)were included,analyzed and integrated of relevant literature content.There were some problems in the prevention and treatment of hemophilia in China,such as low living conditions,low popularity of family therapy and weak basic construction of prevention and treatment.However,the participation of community health service centers in prevention and treatment of hemophilia patients has institutional feasibility,conceptual feasibility,practical feasibility and cost feasibility.Community health service centers participating in hemophilia prevention and treatment can make up for their deficiencies and supplement the functions of hemophilia treatment center.How to integrate the functions of community health service centers with the prevention and treatment of hemophilia patients and improve the living conditions of hemophilia patients will become the focus of further research.
引文
[1]孟莎,刘民.将艾滋病/性病预防服务纳入城市社区卫生服务案例研究[J].中国全科医学,2009,12(11):1037-1038.
[2]中华医学会血液学分会血栓与止血学组、中国血友病协作组.血友病诊断与治疗中国专家共识(2017年版)[J].中华血液学杂志,2017,38(5):364-370.
[3]胡群.再谈儿童血友病预防治疗[J].中国小儿血液与肿瘤杂志,2016,21(1):2-4.
[4]刘国青,王海红,吴润晖,等.血友病的家庭治疗[J].血栓与止血学,2015,21(5):326-327,333.
[5]Fischer K,Valentino L,Ljunq R,et al.Prophylaxis for severe haemophilia:clinical challenges in the absence as well as in the presence of inhibitors[J].Haemophilia,2008,14(Suppl 3):196-201.
[6]张迎红,胡国强,程红,等.国外血友病家庭治疗和护理管理现状[J].护理管理杂志,2011,11(5):334-335.
[7]钟小红,李亚洁,赵洁,等.广州地区29例血友病患儿家庭治疗及护理现状调查[J].护理学报,2007,14(3):18-20.
[8]俞菊红,程洪波,罗发香,等.血友病家庭护理在改善患儿健康相关生活质量中的作用[J].南昌大学学报(医学版),2013,53(4):26-28.
[9]吴心怡,王旭梅,甄英姿,等.儿童血友病家庭治疗开展现状调查[J].护理研究,2016,30(33):4192-4195.
[10]唐凌,张纪水,吴润晖.中、重度合并关节病变血友病患儿主观生活质量与其家庭负担评价[J].血栓与止血学,2014,20(1):8-12.
[11]王梦媛,姚敏,万丹丹,等.187例血友病患儿关节状况与生活质量分析[J].浙江医学,2017,39(9):736-739.
[12]骆英华,曾小菁.血友病的诊断及治疗的研究进展[J].中外医疗,2015(10):195-196.
[13]Zhang L,Li H,Zhao H,et al.Retrospective analysis of 1312patients with hemophilia and related disorders in a single Chinese institute[J].Haemophilia,2003,9(6):696-702.
[14]钟小红,周春兰,周宏珍,等.血友病患者诊疗及健康状况调查分析[J].护理学杂志,2010,25(11):23-26.
[15]钟小红,李亚洁,孙竞.我国及欧美血友病综合关怀模式的现状[J].护理管理杂志,2007,7(8):20-22.
[16]李进凤,曾旋辉,黄琴,等.广东血友病患者医疗保险现状调查[J].卫生经济研究,2010(12):37-39.
[17]孙蓉,张晓峰,杨俊丽,等.心理咨询对血友病患者心境障碍的干预效果[J].现代生物医学进展,2016,16(27):5383-5386.
[18]姚卫光,崔华欠,李红,等.广州市城镇居民社区卫生服务利用现状及就医意向调查[J].中国全科医学,2016,19(7):831-834.
[19]Evatt BL,Black C,Batorova A,et al.Comprehensive Care for haemophilia around the world[J].Haemophilia,2010,10(Suppl 4):9-13.
[20]Khoriaty R,Taher A,Inati A,et al.A comparison between prophylaxis and on demand treatment for severe haemophilia[J].Clin Lab Haematol,2010,27(5):320-323.
[21]Liou WS,Tu TC,Cheng SN,et al.Secondary prophylaxis therapy treatment versus on-demand treatment for patients with severe haemophilia A:Comparisons of cost and outcomes in Taiwan[J].Haemophilia,2011,17(1):45-54.
[22]曲艳吉,殷环,庞元捷,等.中国大陆血友病患者治疗现状和经济负担的系统评价[J].中国循证医学杂志,2013,13(2):182-189.
[23]杜锋蔚,孙彩虹.血友病病人家庭治疗现状及影响因素的质性研究[J].护理研究,2012,26(3):229-230.
[2]中华医学会血液学分会血栓与止血学组、中国血友病协作组.血友病诊断与治疗中国专家共识(2017年版)[J].中华血液学杂志,2017,38(5):364-370.
[3]胡群.再谈儿童血友病预防治疗[J].中国小儿血液与肿瘤杂志,2016,21(1):2-4.
[4]刘国青,王海红,吴润晖,等.血友病的家庭治疗[J].血栓与止血学,2015,21(5):326-327,333.
[5]Fischer K,Valentino L,Ljunq R,et al.Prophylaxis for severe haemophilia:clinical challenges in the absence as well as in the presence of inhibitors[J].Haemophilia,2008,14(Suppl 3):196-201.
[6]张迎红,胡国强,程红,等.国外血友病家庭治疗和护理管理现状[J].护理管理杂志,2011,11(5):334-335.
[7]钟小红,李亚洁,赵洁,等.广州地区29例血友病患儿家庭治疗及护理现状调查[J].护理学报,2007,14(3):18-20.
[8]俞菊红,程洪波,罗发香,等.血友病家庭护理在改善患儿健康相关生活质量中的作用[J].南昌大学学报(医学版),2013,53(4):26-28.
[9]吴心怡,王旭梅,甄英姿,等.儿童血友病家庭治疗开展现状调查[J].护理研究,2016,30(33):4192-4195.
[10]唐凌,张纪水,吴润晖.中、重度合并关节病变血友病患儿主观生活质量与其家庭负担评价[J].血栓与止血学,2014,20(1):8-12.
[11]王梦媛,姚敏,万丹丹,等.187例血友病患儿关节状况与生活质量分析[J].浙江医学,2017,39(9):736-739.
[12]骆英华,曾小菁.血友病的诊断及治疗的研究进展[J].中外医疗,2015(10):195-196.
[13]Zhang L,Li H,Zhao H,et al.Retrospective analysis of 1312patients with hemophilia and related disorders in a single Chinese institute[J].Haemophilia,2003,9(6):696-702.
[14]钟小红,周春兰,周宏珍,等.血友病患者诊疗及健康状况调查分析[J].护理学杂志,2010,25(11):23-26.
[15]钟小红,李亚洁,孙竞.我国及欧美血友病综合关怀模式的现状[J].护理管理杂志,2007,7(8):20-22.
[16]李进凤,曾旋辉,黄琴,等.广东血友病患者医疗保险现状调查[J].卫生经济研究,2010(12):37-39.
[17]孙蓉,张晓峰,杨俊丽,等.心理咨询对血友病患者心境障碍的干预效果[J].现代生物医学进展,2016,16(27):5383-5386.
[18]姚卫光,崔华欠,李红,等.广州市城镇居民社区卫生服务利用现状及就医意向调查[J].中国全科医学,2016,19(7):831-834.
[19]Evatt BL,Black C,Batorova A,et al.Comprehensive Care for haemophilia around the world[J].Haemophilia,2010,10(Suppl 4):9-13.
[20]Khoriaty R,Taher A,Inati A,et al.A comparison between prophylaxis and on demand treatment for severe haemophilia[J].Clin Lab Haematol,2010,27(5):320-323.
[21]Liou WS,Tu TC,Cheng SN,et al.Secondary prophylaxis therapy treatment versus on-demand treatment for patients with severe haemophilia A:Comparisons of cost and outcomes in Taiwan[J].Haemophilia,2011,17(1):45-54.
[22]曲艳吉,殷环,庞元捷,等.中国大陆血友病患者治疗现状和经济负担的系统评价[J].中国循证医学杂志,2013,13(2):182-189.
[23]杜锋蔚,孙彩虹.血友病病人家庭治疗现状及影响因素的质性研究[J].护理研究,2012,26(3):229-230.