基于Web的SLE疗法与日常护理知识科普网页的设计开发
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摘要
系统性红斑狼疮(systemic lupus erythematosus,SLE)是一种临床表现为多系统损害的自身免疫介导的自身免疫性疾病,目前病因不明,尚不能根治。针对大众对于SLE疾病认识度不高和SLE患者和家属对于日常护理知识的需求,研发"基于Web的SLE疗法与日常护理知识科普网页"。网页分为"SLE疾病介绍"、"SLE的治疗方法"、"患者日常护理"、"未病预防"、"误区与贴士"、"用户讨论交流区"6个模块,具有全面详细的护理信息,中医体质测试及特色养护知识,明确具体的"贴士提醒"和满足患者交流需求的"讨论区"。网页内容完整具体,语言通俗可读性强,能帮助浏览者获取有效实用的健康知识,利于疾病科普和患者预后。
Systemic lupus erythematosus(SLE) is an autoimmune mediated autoimmune disease characterized by multiple systems of damage. The cause is unknown now, and it cannot be cured. Aiming at the public's low awareness of SLE and the demands of SLE patients and their families for daily nursing knowledge, a webpage named "Web based SLE therapy and daily care knowledge platform" is developed. There are six modules are contained in the webpage, respectively named "SLE disease introduction", "SLE treatment methods", "Patients with daily care", "Disease prevention","Misunderstanding and tips" and "User discussion area". Some features like comprehensive nursing information, TCM physique test and characteristics of maintenance knowledge, clear and specific "Tips to remind" and "Discussion forums" for users' communication, are included. The content of the webpage is complete and specific, and the language is readable and can help the viewers to obtain effective and practical health knowledge, which is conducive to disease science popularity and patient prognosis.
Systemic lupus erythematosus(SLE) is an autoimmune mediated autoimmune disease characterized by multiple systems of damage. The cause is unknown now, and it cannot be cured. Aiming at the public's low awareness of SLE and the demands of SLE patients and their families for daily nursing knowledge, a webpage named "Web based SLE therapy and daily care knowledge platform" is developed. There are six modules are contained in the webpage, respectively named "SLE disease introduction", "SLE treatment methods", "Patients with daily care", "Disease prevention","Misunderstanding and tips" and "User discussion area". Some features like comprehensive nursing information, TCM physique test and characteristics of maintenance knowledge, clear and specific "Tips to remind" and "Discussion forums" for users' communication, are included. The content of the webpage is complete and specific, and the language is readable and can help the viewers to obtain effective and practical health knowledge, which is conducive to disease science popularity and patient prognosis.
引文
[1]秦颖,孙素平.周翠英治疗系统性红斑狼疮经验[J].实用中医药杂志,2016,32(5):499-500.
[2]徐文艳,谢蕴秋.系统性红斑狼疮患者综合护理干预效果分析[J].现代医药卫生,2015,31(23):3532-3534.
[3]张蕴宇.基于系统性红斑狼疮的护理干预对策探析[J].中国医药指南,2015,13(1):246-247.
[4]庞国明.红斑狼疮[M].北京:中国医药科技出版社,2004:3-4.
[5]尚航.健康教育对系统性红斑狼疮患者的效果评价[J].中国医学工程,2012,20(4):148.
[6]Mok CC,To CH,Ho LY,et al.Incidence and mortality of systemic lupus erythematosus in a Southern Chinese population2000-2006[J].J Rheumatol,2008,35(10):1978-1982.
[7]王庆斐,陈惠仪.系统性红斑狼疮患者治疗依从性及影响因素调查[J].重庆医学,2010,39(2):220-222.
[8]中华医学会风湿病学分会.系统性红斑狼疮诊断及治疗指南[J].中华风湿病学杂志,2010,14(5):342-346.
[9]曾芙蓉,徐倩云,刘頔,等.系统性红斑狼疮患者生活质量影响因素分析[J].临床内科杂志,2017,34(6):386-390.
[10]Chuang TH,Lin KC,Gau MLJ,et al.Validation of the braden self-help model in women with systemic lupus erythematosus[J].Nurs Res,2010,18(3):206-214.
[11]王贞,陈和清.系统性红斑狼疮患者抑郁症发生情况及健康教育对其影响[J].慢性病学杂志,2018,19(1):12-14,18.
[12]付霞.健康教育对系统性红斑狼疮患者遵医行为及生活质量的影响[J].临床文献医药杂志,2015,2(31):6481-6484.
[13]吴叶荣,张海云,王晓兰.系统性红斑狼疮患者不确定感与生活质量的相关分析[J].护理管理杂志,2013,13(1):15-16.
[14]Pollard C,Hartz S,Leage SL,et al.Elicitation of health state utilities associated with varying severities of flares in systemic lupus erythematosus[J].Health&Quality of Life Outcomes,2015,13(1):1-10.
[15]陆文静,赵丹凤,聂春香,等.健康教育对系统性红斑狼疮患者生存质量的影响[J].齐鲁护理杂志,2010,16(16):8-9.
[16]张露,刘媛,张树泉,等.妊娠合并系统性红斑狼疮77例临床分析[J].现代妇产科进展,2015,24(4):296-298.
[17]Clark CA,Spitzer KA,Laskin CA.Decrease in pregnancy loss rates in patients with systemic lupus erythematous over a 40-year period[J].J Rheumatol,2005,32(9):1709-1712.
[18]中国系统性红斑狼疮研究协作组专家组,国家风湿病数据中心.中国系统性红斑狼疮患者围产期管理建议[J].中华医学杂志,2015,95(14):1056-1060.
[19]林迎春,庄嘉元,罗利,等.系统性红斑狼疮女性患者婚育现状分析[J].护理研究,2015,34(17):2311-2314.
[20]陈艳.健康教育联合保健干预对系统性红斑狼疮患儿的治疗效果及生活质量影响[J].中国妇幼保健,2018,33(11):2474-2476.
[21]宋彦,王新,陈慧丽.系统性红斑狼疮患者健康教育需求调查与护理对策[J].中国伤残医学,2012,20(3):20-21.
[22]Patterson E,Wan YW,Sidani S.Nonpharmacologi cal nursing interventions for the management of patient fatigue:a literature review[J].Journal of Clinical Nursing,2013,22(19/20):2668-2678.
[23]Ahn GE,Ramsey-Goldman R.Fatiguc in systemic lupus crythematosus[J].Int J Clin Rhcumato1,2012,7(2):217-227.
[24]田晓芳,肖清.系统性红斑狼疮病人的心理状态分析及护理[J].世界最新医学信息文摘,2017,17(88):212,216.
[25]范容.系统性红斑狼疮患者的心理状态及临床心理护理方法分析[J].吉林医学,2011,32(33):7169-7169.
[26]张裙,魏巍,姚海燕,等.心理干预对系统性红斑狼疮病人身心症状影响的系统评价[J].护理研究,2012,26(5C):1240-1243.
[2]徐文艳,谢蕴秋.系统性红斑狼疮患者综合护理干预效果分析[J].现代医药卫生,2015,31(23):3532-3534.
[3]张蕴宇.基于系统性红斑狼疮的护理干预对策探析[J].中国医药指南,2015,13(1):246-247.
[4]庞国明.红斑狼疮[M].北京:中国医药科技出版社,2004:3-4.
[5]尚航.健康教育对系统性红斑狼疮患者的效果评价[J].中国医学工程,2012,20(4):148.
[6]Mok CC,To CH,Ho LY,et al.Incidence and mortality of systemic lupus erythematosus in a Southern Chinese population2000-2006[J].J Rheumatol,2008,35(10):1978-1982.
[7]王庆斐,陈惠仪.系统性红斑狼疮患者治疗依从性及影响因素调查[J].重庆医学,2010,39(2):220-222.
[8]中华医学会风湿病学分会.系统性红斑狼疮诊断及治疗指南[J].中华风湿病学杂志,2010,14(5):342-346.
[9]曾芙蓉,徐倩云,刘頔,等.系统性红斑狼疮患者生活质量影响因素分析[J].临床内科杂志,2017,34(6):386-390.
[10]Chuang TH,Lin KC,Gau MLJ,et al.Validation of the braden self-help model in women with systemic lupus erythematosus[J].Nurs Res,2010,18(3):206-214.
[11]王贞,陈和清.系统性红斑狼疮患者抑郁症发生情况及健康教育对其影响[J].慢性病学杂志,2018,19(1):12-14,18.
[12]付霞.健康教育对系统性红斑狼疮患者遵医行为及生活质量的影响[J].临床文献医药杂志,2015,2(31):6481-6484.
[13]吴叶荣,张海云,王晓兰.系统性红斑狼疮患者不确定感与生活质量的相关分析[J].护理管理杂志,2013,13(1):15-16.
[14]Pollard C,Hartz S,Leage SL,et al.Elicitation of health state utilities associated with varying severities of flares in systemic lupus erythematosus[J].Health&Quality of Life Outcomes,2015,13(1):1-10.
[15]陆文静,赵丹凤,聂春香,等.健康教育对系统性红斑狼疮患者生存质量的影响[J].齐鲁护理杂志,2010,16(16):8-9.
[16]张露,刘媛,张树泉,等.妊娠合并系统性红斑狼疮77例临床分析[J].现代妇产科进展,2015,24(4):296-298.
[17]Clark CA,Spitzer KA,Laskin CA.Decrease in pregnancy loss rates in patients with systemic lupus erythematous over a 40-year period[J].J Rheumatol,2005,32(9):1709-1712.
[18]中国系统性红斑狼疮研究协作组专家组,国家风湿病数据中心.中国系统性红斑狼疮患者围产期管理建议[J].中华医学杂志,2015,95(14):1056-1060.
[19]林迎春,庄嘉元,罗利,等.系统性红斑狼疮女性患者婚育现状分析[J].护理研究,2015,34(17):2311-2314.
[20]陈艳.健康教育联合保健干预对系统性红斑狼疮患儿的治疗效果及生活质量影响[J].中国妇幼保健,2018,33(11):2474-2476.
[21]宋彦,王新,陈慧丽.系统性红斑狼疮患者健康教育需求调查与护理对策[J].中国伤残医学,2012,20(3):20-21.
[22]Patterson E,Wan YW,Sidani S.Nonpharmacologi cal nursing interventions for the management of patient fatigue:a literature review[J].Journal of Clinical Nursing,2013,22(19/20):2668-2678.
[23]Ahn GE,Ramsey-Goldman R.Fatiguc in systemic lupus crythematosus[J].Int J Clin Rhcumato1,2012,7(2):217-227.
[24]田晓芳,肖清.系统性红斑狼疮病人的心理状态分析及护理[J].世界最新医学信息文摘,2017,17(88):212,216.
[25]范容.系统性红斑狼疮患者的心理状态及临床心理护理方法分析[J].吉林医学,2011,32(33):7169-7169.
[26]张裙,魏巍,姚海燕,等.心理干预对系统性红斑狼疮病人身心症状影响的系统评价[J].护理研究,2012,26(5C):1240-1243.