目的 纵向探讨系统性红斑狼疮(systemic lupus erythematosus，SLE)患者住院至出院3个月间疾病进展恐惧(fear of progression，FoP)的变化趋势，并分析其影响因素。方法 2021年11月至2022年11月，采用便利抽样法选取在山东省某三级甲等医院住院的206例SLE患者作为研究对象，采用一般资料调查表、狼疮疾病活动指数评分表(systemic lupus erythe-matosus disease activity index，SLEDAI)、恐惧疾病进展简化量表(fear of progression questionnaire-short form，FoP-Q-SF)、简易疾病认知问卷(brief illness perception questionnaire，Brief-IPQ)、医学应对方式问卷(medical coping modes questionnaire，MCMQ)、简体中文版医疗社会支持量表(medical outcomes study social support survey，MOS-SSS)及10条目心理弹性量表(10 item Connor-Davidson resilience scale，CD-RISC-10)分别在患者住院期间、出院后1个月、出院后3个月对其进行调查。结果 三个时间点患者的FoP总分分别为(34。30±9。26)、(31。53±8。33)、(26。79±7。98)分，随时间呈下降趋势(P＜0。05)。广义线性混合模型结果显示，家庭人均月收入、狼疮疾病活动指数、住院次数、疾病认知、面对、回避、屈服、社会支持是SLE患者FoP的影响因素(均P＜0。05)。结论 SLE患者FoP水平较高，但随时间呈下降趋势;医护人员应重点关注收入较低、狼疮疾病活动指数较高、首次住院、认知不良、消极应对及社会支持缺乏的患者，积极采取干预措施，以减轻其FoP水平。
Fear of Progression and Its Influencing Factors in Patients with Systemic Lupus Erythematosus:A Longitudinal Study
Objective To longitudinally explore the trend of fear of progression(FoP)in patients with sys-temic lupus erythematosus(SLE)between hospitalization and 3 months after discharge,and analyzed its influencing factors.Methods From November 2021 to November 2022,a convenience method was used to select 206 patients with SLE who were hospitalized in a tertiary A hospital in Shandong Province as the study subjects.The general information questionnaire,systemic lupus erythematosus disease activity index(SLEDAI),fear of progression questionnaire-short form(FoP-Q-SF),brief illness perception questionnaire(Brief-IPQ),medical coping modes questionnaire(MCMQ),Simplified Chinese version of medical out-comes study social support survey(MOS-SSS)and 10 item Connor-Davidson resilience scale(CD-RISC-10)were used to investigate the patients during hospitalization,1 month after discharge,and 3 months after discharge.Results The FoP scores at three time points were(34.30±9.26),(31.53±8.33),and(26.79±7.98)respectively,showing a downward trend over time(P＜0.05).The results of the generalized linear mixed model showed that the average monthly income per capita,SLEDAI,the number of hospitalizations,disease cognition,facing,avoidance,yielding and social support were the influencing factors of FoP in pa-tients with SLE(all P＜0.0 5).Conclusions SLE patients have a higher level of FoP,which tends to de-crease over time.Medical staff should focus on patients with lower income,higher SLEDAI,first-time hos-pitalization,cognitive impairment,negative coping strategies,and lack of social support,then actively take intervention measures to alleviate patients'FoP.
systemic lupus erythematosusfear of progressioninfluencing factorslongitudinal study
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