Abstract:

Objective　To explore the effects of IEES multidimensional supportive care on self-perceived burden and quality of life of patients with myasthenia gravis (MG). Methods　A prospective study was conducted on 156 MG patients admitted to Henan Provincial People's Hospital from July 2021 to April 2024. They were randomly divided into a routine group and a nursing group by the coin tossing method, with 78 cases in each group. In the routine group, there were 46 males and 32 females, aged (34.18±4.21) years, with a course of (13.58±6.12) months, receiving routine care; in the  nursing group, 49 males and 29 females, aged (35.08±4.67) years, with a course of disease of (14.23±5.93) months, IEES multidimensional support nursing was implemented on the basis of routine nursing. Both groups were continuously intervened for 6 months. The self-perceived burden [Self-Perceived Burden Scale (SPBS)], self-efficacy [Self-efficacy for Managing Chronic Disease 6-Item Scale (CDSS)], social support [Social Support Rating Scale (SSRS)], and quality of life [36-Item Short Form Health Survey,Short Form 36 (SF-36)] were compared between the two groups. Statistical methods using t test. Results　After nursing, the scores of physical factors, emotional factors and economic factors in the nursing group were lower than those in the routine group (13.62±2.48　vs. 16.58±3.14, 12.21±3.05 vs. 14.55±2.10, and 3.15±0.65 vs. 3.89±0.69), and the scores of symptom management self-efficacy, disease common management self-efficacy, objective support, subjective support, support utilization and total score, physiological function, physical function, social function and psychological function were higher (19.65±3.16 vs. 17.08±3.23, 12.08±2.26 vs. 9.43±2.04, 13.53±1.08 vs. 12.26±1.10, 19.89±2.14 vs. 17.58±2.22, 9.45±1.85 vs. 5.86±1.23 and 41.69±4.53 vs. 35.12±4.82, 66.78±5.13 vs. 46.63±3.86, 64.21±3.99 vs. 51.47±2.62, 61.23±5.11 vs. 48.72±4.86, and 62.63±5.17 vs. 49.36±3.64), with statistical differences (all P<0.05). Conclusion　The IIEES multidimensional supportive care model has significant effects in reducing the burden of self-perception, improving self-efficacy, enhancing social support, and improving the quality of life of MG patients.

Key words:

Myasthenia gravis, IEES multidimensional supportive care, Self-perceived burden, Quality of life, Social supportiveness

摘要：

目的　探讨IEES多维支持护理对重症肌无力（MG）患者自我感受负担和生活质量的影响。方法　前瞻性研究，选取2021年7月至2024年4月河南省人民医院收治的156例MG患者作为研究对象，以抛硬币法将其随机分为常规组及护理组，各78例。常规组男46例、女32例，年龄（34.18±4.21）岁，病程（13.58±6.12）个月，接受常规护理；护理组男49例、女29例，年龄（35.08±4.67）岁，病程（14.23±5.93）个月，在常规护理基础上实施IEES多维支持护理。两组均持续干预6个月。对比两组患者自我感受负担［自我感受负担量表（SPBS）］、自我效能［慢性病管理自我效能量表（CDSS）］、社会支持度［社会支持评定量表（SSRS）］及生活质量情况［健康调查简表（SF-36）］。统计学方法采用t检验。结果　护理后，护理组患者身体因素［（13.62±2.48）分］、情感因素［（12.21±3.05）分］、经济因素评分［（3.15±0.65）分］均低于常规组［（16.58±3.14）分、（14.55±2.10）分、（3.89±0.69）分］，症状管理自我效能［（19.65±3.16）分］、疾病共性管理自我效能［（12.08±2.26）分］、客观支持［（13.53±1.08）分］、主观支持［（19.89±2.14）分］、支持利用度［（9.45±1.85）分］及总分［（41.69±4.53）分］、生理功能［（66.78±5.13）分］、躯体功能［（64.21±3.99）分］、社会功能［（61.23±5.11）分］、心理功能评分［（62.63±5.17）分］均高于常规组［（17.08±3.23）分、（9.43±2.04）分、（12.26±1.10）分、（17.58±2.22）分、（5.86±1.23）分、（35.12±4.82）分、（46.63±3.86）分、（51.47±2.62）分、（48.72±4.86）分、（49.36±3.64）分］，差异均有统计学意义（均P<0.05）。结论　IIEES多维支持护理模式可减轻MG患者自我感受负担，提升自我效能，增强社会支持，提高生活质量。

关键词:

重症肌无力, IEES多维支持护理, 自我感受负担, 生活质量, 社会支持度