罕见病管理中全科医师的认知与挑战现状分析

胡波琳; 宣金燕; 沈佳英; 黄振华; 孙俊生; 任菁菁

doi:10.16766/j.cnki.issn.1674-4152.004131

罕见病管理中全科医师的认知与挑战现状分析

doi: 10.16766/j.cnki.issn.1674-4152.004131

胡波琳^{1, 2},
宣金燕³,
沈佳英⁴,
黄振华^{1, 2},
孙俊生^{1, 2},
任菁菁^5, ,

1.
深圳市龙岗中心医院全科医学科，广东深圳 518116
2.
广州中医药大学深圳临床医学院，广东深圳 518116
3.
嘉兴市第二医院全科医学科，浙江嘉兴 314000
4.
湖州市中心医院全科医学科，浙江湖州 313000
5.
浙江大学医学院附属第一医院全科医学科，浙江杭州 311100

基金项目:

国家自然科学基金项目 72274169

深圳市龙岗区科技创新专项资金 LGWJ2022-6

深圳市龙岗区医学重点学科建设经费资助 2024-2027

详细信息

通讯作者:
任菁菁，E-mail: 3204092@zju.edu.cn

中图分类号: R192.3
计量
- 文章访问数: 10
- HTML全文浏览量: 5
- PDF下载量: 1
- 被引次数: 0
出版历程
- 收稿日期: 2024-10-17
- 网络出版日期: 2025-10-31

Analysis of the status quo of the perceptions and challenge of general practitioner in rare disease management

HU Bolin^{1, 2},
XUAN Jinyan³,
SHEN Jiaying⁴,
HUANG Zhenhua^{1, 2},
SUN Junsheng^{1, 2},
REN Jingjing^{5
, ,}

1.
Department of General Practice, Longgang District Central Hospital of Shenzhen, Shenzhen, Guangdong 518116, China

摘要

摘要: 目的调查全科医师对罕见病的认知及对罕见病管理的看法，识别其在罕见病管理中遇到的挑战，以期为提升全科医师的罕见病管理能力提供参考意见。方法通过文献回顾、专家咨询后确定量表初步条目，对问卷进行信效度分析后形成最终问卷，以全科医师为研究对象，采用问卷星填写问卷。使用SPSS 27.0统计学软件完成数据分析。结果量表由3个维度25个条目组成，包括基本信息、认知现状、对罕见病管理的看法，Cronbach's α系数为0.895。验证性因子分析显示模型适配良好。共回收有效问卷434份，成绩合格者占28.57%(124/434)，不同人口学特征的全科医师对罕见病的认知差异均无统计学意义(P＞0.05)。全科医师管理罕见病患者的难点在于建立诊断、监测治疗和支持并管理并发症。做到“加强对罕见病患者的随访，监督患者遵医嘱服药; 全科医师主导组成罕见病管理小组，帮助患者提供连续性护理，帮助患者与专家沟通、协调复杂的管理及提供心理支持及专业的指导; 密切监测患者病情变化，及时发现并发症，对罕见病患者进行身体及心理的康复，及时转诊发生病情变化的罕见病患者”有助于罕见病患者的管理。结论目前全科医师对罕见病认识普遍不足，罕见病管理中的挑战主要是罕见病的诊断、治疗及支持并管理并发症。应该加强培训以提升全科医师管理罕见病的能力。
- 罕见病管理 /
- 全科医生 /
- 认知现状 /
- 调查研究
Abstract: Objective To study the perception status of general practitioners about rare disease management, analyze the views about rare disease management of general practitioners, clarify the current status of the recognition and challenges of general practitioners in rare disease management, and provide reference opinions for improving the ability of general practitioners to manage rare diseases. Methods After literature review and expert consultation, preliminary items of the scale were determined. The questionnaire was then subjected to reliability and validity analysis to form the final questionnaire, targeting general practitioners and using the Questionnaire Star platform for completion. Analyzed using SPSS 27.0 statistical software. Results The scale was preliminarily determined to consist of 25 items in 3 dimensions, including basic information, cognitive status, and opinions on rare disease management, with a Cronbach's α coefficient of 0.895. Confirmatory factor analysis indicated good model fit. A total of 434 questionnaires were confirmed to be valid. Only 28.57% (124/434) passed, and there was no statistically significant difference in the cognition of rare diseases among general practitioners with different demographic characteristics (P>0.05). In their views on the management of rare diseases, the respondents believed that the difficulty of general practitioners in managing patients with rare diseases was to establish a diagnosis, monitor treatment, and support and manage complications. At the same time, the respondents believed that if general practitioners want to do a good job in the comprehensive management of patients with rare diseases, they need to "strengthen the follow-up of patients with rare diseases to ensure medication compliance. The rare disease management team, led by general practitioners, can provide continuous care for patients and help patients communicate with experts, coordinate complex management, and provide psychological support and professional guidance. Closely monitor the changes in the patient's condition, detect complications in time, carry out physical and psychological rehabilitation for patients with rare diseases, and refer patients with rare diseases with changes in their condition in a timely manner." Conclusion At present, general practitioners generally have insufficient understanding of rare diseases. The main challenges in rare disease management lie in the diagnosis, treatment, support and management of complications of rare diseases. Training should be strengthened to enhance the ability of general practitioners to manage rare diseases.
- Rare disease management /
- General practitioners /
- Perceptions /
- Investigative study

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表 1 434名全科医师一般资料

Table 1. Information of 434 general practitioners

项目	分类	人(%)
年龄	≤30岁	122(28.11)
	31~40岁	130(29.95)
	41~50岁	113(26.04)
	>50岁	69(15.90)
性别	男性	199(45.85)
	女性	235(54.15)
最高学历	研究生及以上	81(18.66)
	本科	327(75.35)
	大专	20(4.61)
	高中/中专及以下	6(1.38)
工作单位	三级医院	154(35.48)
	二级医院	17(3.92)
	基层卫生机构	263(60.60)
医师职称	高级职称	136(31.33)
	中级职称	185(42.63)
	初级及以下职称	113(26.04)
注册全科执业证方式	转岗培训	119(27.42)
	全科医师规范化培训	246(56.68)
	岗位培训	49(11.29)
	其他	20(4.61)
工作年限	5年内	134(30.88)
	5~10年	94(21.66)
	11~19年	74(17.05)
	20年及以上	132(30.41)
全科住培师资证书	有	243(55.99)
	无	191(44.01)

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表 2 不同人口学特征全科医师对罕见病的认知情况比较(人)

Table 2. Comparison of the knowledge of rare diseases among general practitioners with different demographic characteristics (person)

人口学特征	例数	不及格	及格	统计量	P值
工作机构				-0.637^a	0.524
三级医院	154	107	47
二级医院	17	13	4
基层卫生机构	263	191	72
性别				0.528^b	0.468
男性	199	146	53
女性	235	165	70
年龄(岁)				-0.096^a	0.923
≤30	122	88	34
31~40	130	90	40
41~50	113	85	28
＞50	69	48	21
最高学历				-0.138^a	0.890
研究生及以上	81	59	22
本科	327	233	94
大专	20	14	6
高中及以下	6	5	1
职称				-0.465^a	0.642
高级	136	98	38
中级	185	128	57
初级及以下	113	85	28
获得全科执业证的方式				3.052^b	0.384
转岗	119	88	31
规培	246	177	69
岗培	49	35	14
其他	20	11	9
工作年限(年)				-0.240^a	0.810
＜5	134	96	38
5~10	94	61	33
11~19	74	62	12
≥20	132	92	40
是否有住培证				0.059^b	0.808
是	243	173	70
否	191	138	53
注: ^a为Z值，^b为χ²值。

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