系统性红斑狼疮患者的社会支持水平及其慢性病管理策略
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摘要
目的:探讨系统性红斑狼疮(systemic lupus erythematosus,SLE)患者的社会支持水平及其影响因素,制订相应慢性病管理策略。方法:采用社会支持评定量表(Social Support Rating Scale,SSRS)、抑郁症筛查量表(Patient Health Questionnaire,PHQ-9)、广泛性焦虑量表(Generalized Anxiety Disorder,GAD-7)、SF-36健康调查量表、匹兹堡睡眠质量量表、疲劳视觉模拟评分法对SLE患者进行调查,收集人口学和临床资料,以SLE疾病活动性评分(SLE Disease Activity Index,SLEDAI)评估疾病活动度,SLE疾病损伤指数(SLEDamageIndex,SDI)评估疾病损伤程度,分析社会支持的影响因素。结果:共纳入246例SLE患者,SSRS总分为40.76±7.93,与国内常模相比差异无统计学意义(P>0.05)。年龄<18岁、无配偶、无职业和存在疾病损伤的SLE患者的社会支持水平较低(P<0.05)。与高社会支持组(以均数为界)相比,低社会支持组患者抑郁、焦虑的程度更高,患者在SF-36中的心理健康领域(活力、社会功能、情感职能及精神健康)和生理职能得分更低(P<0.05)。结论:SLE患者社会支持水平与健康相关生活质量密切相关,受到年龄、婚姻状况、职业情况、疾病损伤程度等因素的影响。在慢性病管理中,应加强对患者及家属的健康教育,帮助患者提高社会支持水平,从而提高其生活质量。
Objective: To investigate the social support level and its infl uencial factors in patients with systemiclupus erythematosus(SLE), and to develop the management strategies for chronic disease.Methods: Patients with SLE were investigated by Social Support Rating Scale(SSRS), Patient Health Questionnaire(PHQ-9), Generalized Anxiety Disorder(GAD-7), 36-Item Short-Form Health Survey(SF-36) and Visual Analogue Scale(VAS) of fatigue. The demographic and clinical data of SLE patients were recorded. SLE disease activity and damage severity were assessed by SLE Disease Activity Index(SLEDAI) and SLE Damage Index(SDI), respectively. Influencial factors for social support were analyzed.Results: A total of 246 patients were included. Social support scores for these patients were 40.76±7.93 and the scores showed no significant difference with the national norm(P>0.05). Patients who were younger than 18, single, unemployed or damaged by disease showed lower level of social support(P<0.05). Compared with the high social support group, patients in the low social support group experienced more severe depression or anxiety, and scored lower on mental component summary scale(vitality, social functioning, emotional role and mental health perception) and physical role of SF-36(P<0.05).Conclusion: Social support levels for patients with SLE are closely related to the quality of life, and influenced by age, marital status, professional condition, and disease damage. Health education for patients and their families should be strengthened in chronic disease management to enhance social support and finally, improve their quality of life.
Objective: To investigate the social support level and its infl uencial factors in patients with systemiclupus erythematosus(SLE), and to develop the management strategies for chronic disease.Methods: Patients with SLE were investigated by Social Support Rating Scale(SSRS), Patient Health Questionnaire(PHQ-9), Generalized Anxiety Disorder(GAD-7), 36-Item Short-Form Health Survey(SF-36) and Visual Analogue Scale(VAS) of fatigue. The demographic and clinical data of SLE patients were recorded. SLE disease activity and damage severity were assessed by SLE Disease Activity Index(SLEDAI) and SLE Damage Index(SDI), respectively. Influencial factors for social support were analyzed.Results: A total of 246 patients were included. Social support scores for these patients were 40.76±7.93 and the scores showed no significant difference with the national norm(P>0.05). Patients who were younger than 18, single, unemployed or damaged by disease showed lower level of social support(P<0.05). Compared with the high social support group, patients in the low social support group experienced more severe depression or anxiety, and scored lower on mental component summary scale(vitality, social functioning, emotional role and mental health perception) and physical role of SF-36(P<0.05).Conclusion: Social support levels for patients with SLE are closely related to the quality of life, and influenced by age, marital status, professional condition, and disease damage. Health education for patients and their families should be strengthened in chronic disease management to enhance social support and finally, improve their quality of life.
引文
[1]Li MY,Yang YL,Liu L,et al.Effects of social support,hope and resilience on quality of life among Chinese bladder cancer patients:a cross-sectional study[J].Health Qual Life Outcomes,2016,14(1):73.
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[11]王莉莉,刘丽,刘淑梅,等.社区慢性病患者社会支持与自我效能相关性研究[J].中国护理管理,2011,11(8):69-70.WANG Lili,LIU Li,LIU Shumei,et al.The relationship between social support and self-efficac y among chronic patients in community[J].Chinese Nursing Management,2011,11(8):69-70.
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[15]Kheirandish M,Faezi ST,Paragomi P,et al.Prevalence and severity of depression and anxiety in patients with systemic lupus erythematosus:An epidemiologic study in Iranian patients[J].Mod Rheumatol,2015,25(3):405-409.
[16]Mok CC,Cheung MY,Ho LY,et al.Risk and predictors of work disability in Chinese patients with systemic lupus erythematosus[J].Lupus,2008,17(12):1103-1107.
[17]Strand V,Galateanu C,Pushparajah DS,et al.Limitations of current treatments for systemic lupus erythematosus:a patient and physician survey[J].Lupus,2013,22(8):819-826.
[18]Drenkard C,Bao G,Dennis G,et al.Burden of systemic lupus erythematosus on employment and work productivity:data from a large cohort in the southeastern United States[J].Arthritis Care Res(Hoboken),2014,66(6):878-887.
[19]Teixeira RCA,Borba Neto EF,Christopoulos GB,et al.The influence of income and formal education on damage in Brazilian patients with systemic lupus erythematosus[J].J Clin Rheumatol,2017,23(5):246-251.
[20]Gordon C,Isenberg D,Lerstrom K,et al.The substantial burden of systemic lupus erythematosus on the productivity and careers of patients:a European patient-driven online survey[J].Rheumatology,2013,52(12):2292-2301.
[21]王婧婷,王园园,刘砚燕,等.智能手机应用程序在慢性病患者健康管理中的应用及展望[J].中华护理杂志,2014,49(8):994-997.WANG Jingting,WANG Yuanyuan,LIU Yanyan,et al.Application and prospect of smartphone apps in health management of patients with chronic diseases[J].Chinese Journal of Nursing,2014,49(8):994-997.
[2]Ibrahim N,Teo SS,Che Din N,et al.The role of personality and social support in health-related quality of life in chronic kidney disease patients[J].PLoS One,2015,10(7):e0129015.
[3]王喻.老年高血压患者社会支持与生活质量的相关性研究[J].现代预防医学,2011,38(17):3514-3515.WANG Yu.Correlation between social support and quality of life of aged patients with hypertension[J].Modern Preventive Medicine,2011,38(17):3514-3515.
[4]Hochberg MC.Updating the American College of Rheumatology revised criteria for the classification of systemic lupus erythematosus[J].Arthritis Rheum,1997,40(9):1725-1725.
[5]陈耕春.我国城市成年人心理健康监测指标优化--社会支持程度调查研究[J].西安体育学院学报,2001,18(1):99-101.CHEN Gengchun.Optimizing the terms of mental health check about adults in city of our country-Study on the degree of social support[J].Journal of Xi’an Institute of Physical Education,2001,18(1):99-101.
[6]Mazzoni D,Cicognani E.Social support and health in patients with systemic lupus erythematosus:a literature review[J].Lupus,2011,20(11):1117-25.
[7]肖水源.《社会支持评定量表》的理论基础与研究应用[J].临床精神医学杂志,1994,4(2):98-100.XIAO Shuiyuan.Theoretical basis and application in research of Social Support Rating Scale[J].Journal of Clinical Psychiatry,1994,4(2):98-100.
[8]刘涛,刘红,杨宏.系统性红斑狼疮患者自我行为管理与连续性护理干预的关系[J].中国老年保健医学,2013,11(3):116-118.LIU Tao,LIU Hong,YANG Hong.Relationship of self-behavior and continuity of nursing intervention in patients with systemic lupus erythematosus[J].Chinese Journal of Geriatric Care,2013,11(3):116-118.
[9]覃桂玲,韩志香,苏元英,等.门诊疾病管理信息系统在系统性红斑狼疮患者中的应用及效果[J].护理管理杂志,2012,12(8):607-608.TAN Guiling,HAN Zhixiang,SU Yuanying,et al.Application and effects of the outpatient disease management information system in the management of patients with systemic lupus erythematosus[J].Journal of Nursing Administration,2012,12(8):607-608.
[10]刘红,刘丹,周科,等.社会性支持及家庭功能对系统性红斑狼疮生活质量的影响研究[J].实用临床医药杂志,2014,18(2):13-15.LIU Hong,LIU Dan,ZHOU Ke,et al.Influence of social support and family function on quality of life of patients with systemic lupus erythematosus[J].Journal of Clinical Medicine in Practice,2014,18(2):13-15.
[11]王莉莉,刘丽,刘淑梅,等.社区慢性病患者社会支持与自我效能相关性研究[J].中国护理管理,2011,11(8):69-70.WANG Lili,LIU Li,LIU Shumei,et al.The relationship between social support and self-efficac y among chronic patients in community[J].Chinese Nursing Management,2011,11(8):69-70.
[12]Bartoces MG,Severson RK,Rusin BA,et al.Quality of life and selfesteem of long-term survivors of invasive and noninvasive cervical cancer[J].J Womens Health(Lorchmt),2009,18(5):655-661.
[13]Pulvers K,Hood A.The role of positive traits and pain catastrophizing in pain perception[J].Curr Pain Headache Rep,2013,17(5):1-11.
[14]Magrin M,D'addario M,Greco A,et al.Social support and adherence to treatment in hypertensive patients:A Meta-analysis[J].Ann Behav Med,2015,49(3):307-318.
[15]Kheirandish M,Faezi ST,Paragomi P,et al.Prevalence and severity of depression and anxiety in patients with systemic lupus erythematosus:An epidemiologic study in Iranian patients[J].Mod Rheumatol,2015,25(3):405-409.
[16]Mok CC,Cheung MY,Ho LY,et al.Risk and predictors of work disability in Chinese patients with systemic lupus erythematosus[J].Lupus,2008,17(12):1103-1107.
[17]Strand V,Galateanu C,Pushparajah DS,et al.Limitations of current treatments for systemic lupus erythematosus:a patient and physician survey[J].Lupus,2013,22(8):819-826.
[18]Drenkard C,Bao G,Dennis G,et al.Burden of systemic lupus erythematosus on employment and work productivity:data from a large cohort in the southeastern United States[J].Arthritis Care Res(Hoboken),2014,66(6):878-887.
[19]Teixeira RCA,Borba Neto EF,Christopoulos GB,et al.The influence of income and formal education on damage in Brazilian patients with systemic lupus erythematosus[J].J Clin Rheumatol,2017,23(5):246-251.
[20]Gordon C,Isenberg D,Lerstrom K,et al.The substantial burden of systemic lupus erythematosus on the productivity and careers of patients:a European patient-driven online survey[J].Rheumatology,2013,52(12):2292-2301.
[21]王婧婷,王园园,刘砚燕,等.智能手机应用程序在慢性病患者健康管理中的应用及展望[J].中华护理杂志,2014,49(8):994-997.WANG Jingting,WANG Yuanyuan,LIU Yanyan,et al.Application and prospect of smartphone apps in health management of patients with chronic diseases[J].Chinese Journal of Nursing,2014,49(8):994-997.