抗磷脂综合征患者就医行为及治疗现状调查

doi:10.19723/j.issn.1671-167X.2025.06.014

摘要/Abstract

摘要：

目的: 了解抗磷脂综合征(antiphospholipid syndrome, APS)患者就医行为的特点及治疗现状。方法: 对2021年9月至2025年10月就诊的APS患者进行问卷调查, 调查内容包括患者的一般资料、首诊主诉、首诊及确诊科室、确诊时间、随诊时间间隔、既往及目前用药情况, 以及健康状况调查量表(36-item short form health survey, SF-36)、医院焦虑抑郁量表、普适性药物依从性量表。选取年龄及性别相匹配的健康对照, 在同时期采用SF-36量表及医院焦虑抑郁量表进行测评。结果: 参与调查的APS患者共196例, 中位年龄36岁, 男女比例为1:6.8, 中位病程3.0年。患者首次就诊科室最多的为风湿免疫科(33.2%), 其次为血液科(21.9%)和生殖科(18.4%), 其他科室还包括神经内科(5.6%)、血管外科(5.1%)、急诊(4.1%)等。患者首次就诊主诉以流产或不孕(46.9%, 92/196)、血小板减少(28.1%, 55/196)及血栓(20.9%, 41/196)为主。患者主要于风湿免疫科确诊(83.2%), 其次为生殖科确诊(6.1%)。患者从出现初始症状到确诊APS所需的中位时间为6.0个月, 诊断延迟超过1年的占32.1%。在随访方面, 仅有56.6%的患者规律随访, 随访时间间隔≤3个月, 有7.1%的患者随访时间间隔>12个月。APS患者的用药以羟氯喹、华法林等抗凝药物以及抗血小板药物为主, 76.1%的患者用药依从性高或良好。APS患者的一般健康(general health, GH)评分较对照组显著减低(P < 0.05);APS患者中, 焦虑症状存在的比例较对照组显著增加(13.8% vs. 6.7%, P < 0.05)。结论: APS患者的首诊科室分布广泛, 确诊科室以风湿免疫科为首, 延迟诊断现象仍然普遍。与健康人群相比, APS患者的健康感知显著降低, 焦虑水平显著升高。APS患者的随诊须进一步规范, 还要重视对其疾病认知及心理功能方面的干预。

关键词: 抗磷脂综合征, 横断面研究, 诊室就医, 生活质量

Abstract:

Objective: To investigate and analyze the clinical behavior and therapeutic status of patients with antiphospholipid syndrome (APS). Methods: Patients diagnosed with APS between September 2021 and October 2025 were enrolled in this investigation. Data collection included: demographic characteristics, disease duration, initial presenting symptoms, departments of first visit and diagnosis, time of the first visit and definite diagnosis, the interval of follow-up, previous and current medications. Assessments using the 36-item short form health survey (SF-36), hospital anxiety and depression scale (HADS), and general medication adherence scale (GMAS) were also conducted. Age- and gender-matched healthy controls were selected and completed parallel SF-36 and HADS evaluations during the same period. Results: In the study, 196 patients with APS were investigated. The median age of onset was 36 years, the male to female ratio was 1:6.8, and median disease duration was 3.0 years. Rheumatology & Immunology was the most common department for the first hospital visit (33.2%, 65/196), followed by Hematology (21.9%) and Reproductive Endocrinology and Infertility Center (18.4%). Other departments included Neurology (5.6%), Vascular Surgery (5.1%), and Emergency (4.1%). The median time from symptom onset to APS diagnosis was 6.0 months, with 32.1%(63/196) of patients experiencing a diagnostic delay of over one year. Regarding follow-up adherence, 56.6% (111/196) of patients with APS maintained regular follow-ups at intervals of ≤3 months, while 7.1% (14/196) of the patients visited their doctor less than once a year. The primary pharmacological treatments for the APS patients included hydroxychloroquine, warfarin and other anticoagulants, and antiplatelet agents. According to the GMAS assessment, 76.1% of the patients demonstrated high or good medication adhe-rence. Among all SF-36 domains, the scores of general health (GH) in the APS patients were significantly lower compared with healthy controls (P < 0.05). According to the HADS, the proportion of anxiety symptoms was significantly higher in the APS patients compared with healthy controls (13.8% vs. 6.7%, P < 0.05). Conclusion: In this study, delayed diagnosis in APS remained prevalent. Compared with healthy controls, the APS patients exhibited significantly impaired physical function and elevated anxiety symptoms. Regular follow-up monitoring should be emphasized, and greater attention must be paid to psychoeducational interventions.

Key words: Antiphospholipid syndrome, Cross-sectional studies, Office visits, Quality of life

中图分类号:

R593.2

李岩岩, 刘香君, 李公明, 李春, 贾园. 抗磷脂综合征患者就医行为及治疗现状调查[J]. 北京大学学报（医学版）, 2025, 57(6): 1107-1112.

Yanyan LI, Xiangjun LIU, Gongming LI, Chun LI, Yuan JIA. Clinic behavior and therapeutic status of patients with antiphospholipid syndrome[J]. Journal of Peking University (Health Sciences), 2025, 57(6): 1107-1112.

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Drugs	Previous, n (%)	Current, n (%)
Hydroxychloroquine	177 (90.3)	152 (77.6)
Antiplatelets and anticoagulants	173 (88.3)	141 (71.9)
Aspirin	143 (73.0)	94 (48.0)
Low molecular weight heparin	91 (46.4)	40 (20.4)
Rivaroxaban	22 (11.2)	6 (3.1)
Warfarin	45 (23.0)	35 (17.9)
Glucocorticoids	117 (59.7)	76 (38.8)
Immunosuppressants	56 (28.6)	41 (20.9)
Mycophenolate	32 (16.3)	19 (9.7)
Cyclophosphamide	14 (7.1)	1 (0.5)
Methotrexate	6 (3.1)	2 (1.0)
Leflunomide	7 (3.6)	2 (1.0)
Ciclosporin	9 (4.6)	8 (4.1)
Tacrolimus	8 (4.1)	8 (4.1)
Immunoglobulin	21 (10.7)	1 (0.5)
Rituximab	13 (6.6)	4 (2.0)
Statins	17 (8.7)	13 (6.6)
Drug-free	0 (0)	11 (5.6)

Sub-domain	SF-36		P
Sub-domain	APS patients (n=196)	Healthy controls (n=150)	P
Physical functioning	95 (85, 100)	95 (90, 100)	0.15
Role physical	100 (50, 100)	100 (75, 100)	0.07
Bodily pain	72 (62, 100)	72 (62, 100)	0.06
General health	57.0 (40.0, 77.0)	65.0 (52.0, 77.8)	< 0.01^*
Vitality	60 (50, 75)	65 (50, 75)	0.33
Social functioning	87.5 (62.5, 100.0)	87.5 (62.5, 100.0)	0.65
Role emotional	100.0 (33.3, 100.0)	100.0 (33.3, 100.0)	0.57
Mental health	68 (49, 80)	68 (55, 76)	0.28

HADS scores	APS patients (n=196)	Healthy controls (n=150)	P
HADS-A, M (P₂₅, P₇₅)	5 (2, 8)	4 (2, 7)	0.20
HADS-A>10, n (%)	27 (13.8)	10 (6.7)	0.03^*
HADS-D, M (P₂₅, P₇₅)	4 (1, 7)	3 (1, 7)	0.96
HADS-D>10, n (%)	19 (19.7)	14 (9.3)	0.91