系统性红斑狼疮患者自我管理能力现状及相关因素分析

doi:10.19723/j.issn.1671-167X.2024.06.013

摘要/Abstract

摘要：

目的: 了解系统性红斑狼疮(systemic lupus erythematosus，SLE)患者自我管理能力现状，分析影响SLE患者自我管理能力的相关因素。方法: 选取2024年1月至3月在北京某三甲医院风湿免疫科门诊及病房就诊的SLE患者180例，采用一般资料问卷、SLE自我管理能力评估量表、自我效能感量表和家庭关怀度指数问卷进行问卷调查，了解SLE患者自我管理能力现状及相关影响因素。结果: 有效回收问卷170份，自我管理能力总得分(90.94±14.26)分，其中89~110分数段的患者103例(60.6%)，67~88分数段的患者60例(35.3%)，0~66分数段的患者7例(4.1%)；单因素分析结果显示，个人月收入、随诊频率、家庭关怀度指数、自我效能感与SLE自我管理能力得分差异具有统计学意义(P < 0.05)；Spearman秩相关分析结果显示，家庭关怀度指数、自我效能感得分与SLE自我管理能力各维度得分及总分差异具有统计学意义(P < 0.001)；采用多因素Logistic回归分析结果显示，家庭关怀度指数(OR=1.503，95%CI=1.186~1.906)、自我效能感(OR=1.103，95%CI=1.038~1.172)、个人月收入5 000~8 000元/月(OR=0.120，95%CI=0.022~0.645)、1~2周复诊频率(OR=0.044，95%CI=0.003~0.575)是SLE患者的自我管理能力的影响因素。结论: SLE患者自我管理能力水平良好，慢病管理过程中，医护人员应制定细致、分层的管理措施，以进一步提升自我管理能力，建立良好的家庭关怀度指数与患者自我效能感有助于提高自我管理能力、有效管理疾病、提高生活质量。

关键词: 系统性红斑狼疮, 自我管理能力, 自我效能感, 家庭关怀度指数

Abstract:

Objective: To investigate the current status of self-management ability in patients with systemic lupus erythematosus (SLE), and to analyze the related factors affecting the self-management ability of SLE patients. Methods: A total of 180 SLE patients who were selected from the outpatient department and ward of the Department of Rheumatology and Immunology of a Tertiary Hospital in Beijing from January 2024 to March 2024. General information questionnaire, SLE self-management ability assessment scale, general self-efficacy scale (GSES) and family concern index questionnaire (APGAR) were used for questionnaire investigation, so as to investigate the current status and related influencing factors of self-management ability in patients with SLE. Results: A total of 170 questionnaires were effectively collected, and the total score of self-management ability was (90.94±14.26) points, of which 103 patients were 89-110 points, accounting for 60.6%; 60 patients were 67-88 points, accounting for 35.3%; 7 patients were 0-66 points, accounting for 4.1%; The results of univariate analysis showed that personal monthly income, follow-up frequency, family caring index, self-efficacy and SLE self-management ability score had statistical significance (P < 0.05). Spearman rank correlation analysis showed that family caring index, self-efficacy scores were positively correlated with the scores of various dimensions and the total score of SLE self-management scores (P < 0.001). Multivariate Logistic regression analysis showed that family caring index (OR=1.503, 95%CI=1.186-1.906), self-efficacy (OR=1.103, 95%CI=1.038-1.172), personal monthly income of 5 000-8 000 yuan/month (OR=0.120, 95%CI=0.022-0.645) and 1-2 weeks return frequency (OR=0.044, 95%CI=0.003-0.575) were significant influencing factors for SLE patients' self-management ability. Conclusion: The results of this study indicate that patients with SLE have a good level of self-management ability. In the process of chronic disease management, medical staff should formulate detailed and layered intervention measures to further improve self-management ability with SLE patients, and at the same time, help SLE patients establish good family caring index and patient self-efficacy, which is conducive to improving self-management ability of SLE patients, so as to effectively promote disease management and improve the quality of life.

Key words: Systemic lupus erythematosus, Self-management, Self-efficacy, Family concern index

中图分类号:

R593.2

王莉, 高超, 任欢欢, 沈艳平, 黄晓玮, 姚鸿, 韩丹丹. 系统性红斑狼疮患者自我管理能力现状及相关因素分析[J]. 北京大学学报（医学版）, 2024, 56(6): 1029-1035.

Li WANG, Chao GAO, Huanhuan REN, Yanping SHEN, Xiaowei HUANG, Hong YAO, Dandan HAN. Current status and influential factors of self-management ability in patients with systemic lupus erythematosus[J]. Journal of Peking University (Health Sciences), 2024, 56(6): 1029-1035.

图/表 4

表1

表2

一般人口学资料与系统性红斑狼疮患者自我管理水平单因素分析(n=170)"

Items	Cases，n (%)	Self-management level/score，M (P₂₅, P₇₅)	F/t	P value
Gender			0.246	0.621
Male	16 (9.4)	88.0 (79.8，97.3)
Female	154 (90.6)	92.5 (83.0，100.3)
Age/years			0.767	0.514
≤22	17 (10.0)	91.0 (85.0，100.0)
>22-45	116 (68.2)	92.0 (86.0，103.0)
>45-59	26 (15.3)	89.0 (81.0，98.0)
>59	11 (6.5)	96.0 (77.0，106.0)
Degree of education			0.677	0.609
Primary and junior high school	24 (14.1)	88.5 (78.5，104.0)
High /vocational school	33 (19.4)	92.0 (85.0，97.5)
Junior college	39 (22.9)	93.0 (84.0，102.0)
Undergraduate	57 (33.5)	92.0 (81.5，100.0)
Graduate students and above	17 (10.0)	99.0 (89.5，105.0)
Marital status			0.222	0.801
Married	106 (62.4)	92.0 (83.8，103.0)
Unmarried	57 (33.5)	91.0 (82.0，100.0)
Divorce/widowed	7 (4.1)	96.0 (81.0，107.0)
Career			1.355	0.236
No	50 (29.4)	88.0 (78.8，97.3)
Management	15 (8.8)	96.0 (84.0，99.0)
Service	42 (24.7)	93.0 (85.8，105.5)
Education	16 (9.4)	95.0 (73.5，106.0)
Medical	7 (4.1)	99.0 (92.0，110.0)
Technology	5 (2.9)	93.0 (84.0，106.5)
Other	35 (20.6)	92.0 (86.0，102.0)
Monthly income/yuan			3.155	0.016
≤1 000	37 (21.8)	89.0 (78.5，98.0)
>1 000-3 000	24 (14.1)	88.0 (78.5，99.3)
>3 000-5 000	50 (29.4)	92.0 (85.5，98.3)
>5 000-8 000	21 (12.4)	92.0 (78.5，101.0)
>8 000	38 (22.4)	98.5 (91.0，106.5)
Medical expenses			2.927	0.056
Self-paied	18 (10.6)	87.0 (76.5，93.5)
Publicly funded	15 (8.8)	85.0 (81.0，97.0)
Medical insurance	137 (80.6)	93.0 (86.0，103.0)
Disease course/years			1.074	0.371
≤5	74 (43.5)	94.0 (87.0，103.3)
> 5-10	35 (20.6)	93.0 (81.0，98.0)
>10-15	30 (17.6)	92.0 (79.8，98.0)
>15-20	20 (11.8)	88.0 (82.8，103.8)
>20	11 (6.5)	91.0 (83.0，100.0)
Number of complications			1.084	0.366
0	35 (20.6)	96.0 (88.0，105.0)
1	87 (51.2)	92.0 (83.0，103.0)
2	28 (16.5)	89.0 (79.8，97.0)
3	12 (7.1)	90.0 (80.3，100.0)
4	8 (4.7)	85.5 (74.8，94.2)
Medication categories			0.201	0.896
1-2	25 (14.7)	91.0 (84.5，99.5)
3-5	87 (51.2)	92.0 (81.0，100.0)
6-8	35 (20.6)	96.0 (86.0，100.0)
≥9	23 (13.5)	95.0 (84.0，104.0)
Frequency of follow-up			3.689	0.013
1-2 weeks	8 (4.7)	87.0 (57.5，91.8)
3-4 weeks	73 (42.9)	95.0 (87.0，105.0)
2-5 months	45 (26.5)	92.0 (82.0，99.5)
6-12 months	44 (25.9)	90.0 (80.3，110.0)
Family functioning level			11.015	< 0.001
Severely impaired	8 (4.7)	78.0 (69.0，81.5)
Moderately impaired	18 (10.6)	83.0 (74.5，94.0)
Fine	144 (84.7)	93.0 (87.0，103.0)
Self-efficacy score			20.234	< 0.001
0-10	0
11-20	22 (12.9)	82.5 (71.5，87.5)
21-30	78 (45.9)	91.0 (81.3，97.0)
31-40	70 (41.2)	99.0 (89.0，108.0)

表2

表3

表4

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Score	Cases, n (%)	Total, ${\bar x}$±s	Disease cognitive management, ${\bar x}$ ±s	Daily life management, ${\bar x}$±s	Emotional & social management, ${\bar x}$±s	Disease monitoring & fertility management, ${\bar x}$±s
0-66	7 (4.1)	50.14±16.31	16.43±7.79	12.57±5.88	13.43±5.53	7.71±3.15
67-88	60 (35.3)	80.72±5.92	28.02±3.25	21.78±3.80	19.67±2.71	11.25±3.92
89-110	103 (60.6)	99.66±6.95	33.11±2.39	26.71±2.30	23.53±1.69	16.31±3.44

Self-management ability	Family care assessment	P value	General self-efficacy	P value
Disease cognition management	0.347	< 0.001	0.462	< 0.001
Daily life management	0.351	< 0.001	0.348	< 0.001
Emotional & Social management	0.299	< 0.001	0.392	< 0.001
Disease monitoring & Fertility management	0.257	< 0.001	0.458	< 0.001
Total	0.388	< 0.001	0.457	< 0.001

Variable	Univariate analysis		Multivariate analysis
Variable	OR (95%CI)	P	OR (95%CI)	P
Family concern index	1.410 (1.184-1.680)	< 0.001	1.503 (1.186-1.906)	< 0.001
Self-efficacy	1.128 (1.074-1.184)	< 0.001	1.103 (1.038-1.172)	0.002
Monthly income/yuan		0.026		0.146
≤1 000	0.212 (0.078-0.572)	0.002	0.404 (0.070-2.324)	0.310
>1 000-3 000	0.222 (0.074-0.668)	0.007	0.244 (0.039-1.516)	0.130
>3 000-5 000	0.364 (0.143-0.925)	0.034	0.273 (0.066-1.124)	0.072
>5 000-8000	0.341 (0.110-1.064)	0.064	0.120 (0.022-0.645)	0.014
Frequency of follow-up		0.111		0.027
1-2 weeks	0.400 (0.073-2.204)	0.293	0.044 (0.003-0.575)	0.017
3-4 weeks	2.044 (0.956-4.373)	0.065	1.869 (0.625-5.588)	0.263
2-5 months	1.371 (0.596-3.157)	0.458	1.756 (0.539-5.718)	0.350
Degree of education		0.207		0.714
Primary and junior high school	0.185 (0.046-0.743)	0.017	0.276 (0.029-2.611)	0.261
High /vocational school	0.327 (0.088-1.214)	0.095	0.515 (0.061-4.322)	0.541
Junior college	0.359 (0.099-1.298)	0.118	0.669 (0.083-5.366)	0.705
Undergraduate	0.349 (0.114-1.357)	0.140	0.478 (0.710-3.240)	0.450
Career		0.100		0.065
No	0.332 (0.136-0.815)	0.016	0.383 (0.107-1.374)	0.141
Management	0.675 (0.199-2.297)	0.530	0.284 (0.054-1.479)	0.135
Service	0.869 (0.346-2.184)	0.765	1.317 (0.398-4.364)	0.652
Education	0.985 (0.290-3.344)	0.980	2.879 (0.434-19.085)	0.273
Medical	3.545 (0.383-32.817)	0.265	8.649 (0.717-104.369)	0.273
Technology	0.886 (0.130-6.022)	0.902	8.377 (0.223-314.259)	0.250