未成年血友病患者照护者社会经济状况与血友病健康素养的关系：有效健康信息获取的中介作用

doi:10.19723/j.issn.1671-167X.2026.03.019

摘要/Abstract

摘要：

目的: 探讨我国未成年血友病患者照护者的有效健康信息获取水平对其血友病健康素养的影响，为提升照护者健康素养提供建议。方法: 基于2024年全国多中心横断面调查《中国血友病患者健康素养调查》数据，采用方便抽样法纳入856例未成年血友病患者的成年照护者。通过单因素ANOVA分析或独立样本t检验了解不同人口学特征下照护者健康素养和有效健康信息获取水平的差异，并采用Bootstrap法检验有效健康信息获取在健康素养与其影响因素之间的中介作用。结果: 未成年血友病患者照护者的血友病健康素养水平整体较低，平均得分为11.87±2.92。仅有20.68 %的照护者具备血友病健康素养，婚姻状况、受教育程度、家庭年收入、户籍所在地和就业状况是照护者血友病健康素养的影响因素(P＜0.05)。未成年血友病患者照护者对各类健康信息获取渠道的使用率均超过70%，超过95%的照护者报告从医护人员、血友病患者组织获取血友病相关健康信息。未成年血友病患者照护者有效健康信息获取水平整体偏低(34.43±16.50)，有效健康信息获取水平与受教育程度、户籍所在地、就业状况相关，受教育程度越高、户籍所在地为城市及有全职工作的照护者有效健康信息获取水平更高，差异有统计学意义(P＜0.05)。中介效应分析表明，有效健康信息获取水平与血友病健康素养呈正相关(P＜0.01)，且有效健康信息获取在“受教育程度”与“血友病健康素养”、“就业状况”与“血友病健康素养”，以及“户籍所在地”与“血友病健康素养”之间均存在部分中介作用(P＜0.05)。结论: 未成年血友病患者照护者的血友病健康素养水平较低，提升照护者的有效健康信息获取水平有助于改善其血友病健康素养；针对不同社会人口学特征的人群，可通过优化有效健康信息获取路径，间接提升其健康素养水平。

关键词: 血友病健康素养, 未成年血友病患者, 照护者, 有效健康信息获取

Abstract:

Objective: To examine the impact of effective health information acquisition on hemophilia-related health literacy among adult caregivers of children and adolescents with hemophilia in China, and to provide evidence-based recommendations for improving adult caregivers' hemophilia-related health literacy. Methods: Data were derived from the 2024 nationwide multicenter cross-sectional survey, "Health Literacy Survey of Hemophilia Patients in China". A total of 856 adult caregivers of children and adolescents with hemophilia were recruited through convenience sampling. To explore the differences in hemophilia-related health literacy and effective health information acquisition levels among caregivers across different demographic characteristics, univariate ANOVA and independent-samples t test were adopted for statistical analysis. The bootstrap method was employed to test the mediating role of effective health information acquisition in the relationship between hemophilia-related health literacy and its influencing factors. Results: The overall level of hemophilia-related health literacy among caregivers of minor patients with hemophilia was relatively low, with an average score of 11.87±2.92. Only 20.68% of the caregivers for underage patients with hemophilia had acquired hemophilia-related health literacy. Univariate ANOVA analysis indicated that marital status, educational attainment, annual household income, registered residence location, and employment status significantly influenced adult caregivers ' hemophilia-related health literacy (P < 0.05). The utilization rate of various health information channels by caregivers of underage hemophilia patients exceeded 70%. Over 95% of the caregivers reported obtaining hemophilia-related health information from medical staff and hemophilia patient organizations. While, the caregivers demonstrated relatively low overall effective health information acquisition (34.43±16.50). The level of effective health information acquisition was related to educational attainment, place of household registration and employment status. Caregivers with higher educational attainment, urban household registration and full-time employment had a higher level of effective health information acquisition, and the differences were statistically significant (P < 0.05). The mediation analysis showed that the level of effective health information acquisition was positively correlated with hemophilia health literacy (P < 0.01), and effective health information acquisition played a partial mediating role between "education attainment" and "hemophilia health literacy", "employment status" and "hemophilia health literacy", and "place of household registration" and "hemophilia health literacy" (P < 0.05). Higher educational attainment and favorable employment status not only directly improved health literacy, but also indirectly enhanced it by promoting effective information acquisition. Compared with urban household registration, rural household registration had a negative impact on health literacy in patients with hemophilia. Meanwhile, effective information acquisition also exerted a partial mediating effect between registered residence location and health literacy. Conclusion: The hemophilia-related health literacy among caregivers of underage hemophilia patients is relatively low. Enhancing adult caregivers' effective health information acquisition of health information will improve their hemophilia-related health literacy. Tailored strategies to optimize effective health information acquisition for adult caregivers with varying sociodemographic characteristics could indirectly contribute to improved health literacy outcomes.

Key words: Hemophilia-related health literacy, Underage hemophilia patients, Caregiver, Effective health information acquisition

中图分类号:

R554.1

袁睿, 林含杏, 徐晴波, 刘欣然, 石丹妮, 常春, 曹峻洋. 未成年血友病患者照护者社会经济状况与血友病健康素养的关系：有效健康信息获取的中介作用[J]. 北京大学学报（医学版）, 2026, 58(3): 584-591.

Rui YUAN, Hanxing LIN, Qingbo XU, Xinran LIU, Danni SHI, Chun CHANG, Junyang CAO. Impact of effective health information acquisition on hemophilia-related health literacy among caregivers of underage hemophilia patients[J]. Journal of Peking University (Health Sciences), 2026, 58(3): 584-591.

图/表 6

表1

表2

表3

表4

未成年血友病患者照护者在社会人口学因素下血友病健康素养和有效健康信息获取得分"

Variables		n (%)	Hemophilia-related health literacy score, $\bar x \pm s$	P	Effective health information acquisition score, $\bar x \pm s$	P
Kinship	Mother	530 (61.9)	11.89±2.86	0.971	34.40±16.66	0.514
	Father	237 (27.7)	11.83±2.84		35.11±16.71
	Other kinships	89 (10.4)	11.87±3.46		32.74±14.92
Gender	Female	586 (68.5)	11.86±2.92	0.933	34.26±16.48	0.668
	Male	270 (31.5)	11.88±2.92		34.78±16.56
Age range/years	< 30	121 (14.1)	11.84±3.06	0.202	34.54±14.89	0.193
	30- < 35	238 (27.8)	12.00±2.78		34.85±17.59
	35- < 40	237 (27.7)	12.10±2.77		35.39±17.21
	40- < 45	150 (17.5)	11.41±2.89		31.48±14.43
	≥45	110 (12.9)	11.75±3.34		35.33±16.65
Marital status	Married	788 (91.9)	11.94±2.88	0.017	34.66±16.69	0.157
	Unmarried/Divorced/Widowed	68 (7.1)	11.06±3.19		31.71±13.84
Educational attainment	No formal education/Primary school	53 (6.2)	10.83±2.83	< 0.001	28.88±15.20	< 0.001
	Junior high school	249 (29.1)	11.13±2.96		31.15±15.87
	Senior high school/Vocational school	198 (23.1)	11.69±2.76		34.61±17.17
	Associate degree	176 (20.6)	12.45±2.68		36.90±16.02
	Bachelor’s degree or above	170 (21.0)	12.82±2.90		37.97±16.31
Registered residence location	Urban	280 (32.7)	12.35±2.93	0.001	36.65±16.71	0.006
Registered residence location	Rural	576 (67.3)	11.63±2.88		33.34±16.30
Employment status	Full-time employed	388 (45.3)	12.39±2.89	< 0.001	35.90±16.00	0.010
	Part-time employed	145 (17.0)	11.30±3.01		35.62±18.89
	Unemployed	256 (29.9)	11.57±2.79		31.61±15.75
	Student/Retired/Others	67 (7.8)	11.22±2.88		34.09±15.53
Annual household income/yuan	≤100 000	698 (81.4)	11.69±2.93	0.001	34.17±16.92	0.107
	＞100 000-200 000	132 (15.4)	12.65±2.59		34.45±13.73
	＞200 000	26 (3.2)	12.77±3.31		41.13±16.50

表4

图1

表5

有效健康信息获取在教育水平、就业状况、户籍所在地与血友病健康素养之间的中介作用"

Items	Symbol	Meaning	B	95%CI		SE	z /t	P
Items	Symbol	Meaning	B	Lower limit	Upper limit	SE	z /t	P
Educational attainment → Effective health information acquisition → Hemophilia-related health literacy	a1×b1	Indirect effect	0.029	0.000	0.063	0.015	1.858	0.063
Educational attainmen → Effective health information acquisition	a1	X→M	0.162^**	0.097	0.227	0.033	4.913	< 0.001
Effective health information acquisition → Hemophilia-related health literacy	b1	M→Y	0.176^**	0.004	0.348	0.088	2.006	0.045
Educational attainment → Hemophilia-related health literacy	c'1	Direct effect	0.491^**	0.324	0.659	0.086	5.748	< 0.001
Educational attainment → Hemophilia-related health literacy	c1	Total effect	0.520^**	0.354	0.686	0.084	6.156	< 0.001
Employment status → Effective health information acquisition → Hemophilia-related health literacy	a2×b2	Indirect effect	-0.021	-0.050	-0.002	0.013	-1.707	0.088
Employment status → Effective health information acquisition	a2	X→M	-0.091^*	-0.168	-0.013	0.039	-2.303	0.022
Effective health information acquisition→ Hemophilia-related health literacy	b2	M→Y	0.237^**	0.065	0.410	0.088	2.701	0.007
Employment status → Hemophilia-related health literacy	c'2	Direct effect	-0.325^**	-0.523	-0.127	0.101	-3.221	0.001
Employment status → Hemophilia-related health literacy	c2	Total effect	-0.347^**	-0.545	-0.148	0.101	-3.432	0.001
Registered residence location → Effective health information acquisition → Hemophilia-related health literacy	a3×b3	Indirect effect	-0.056	-0.125	-0.009	0.029	-1.922	0.055
Registered residence location → Effective health information acquisition	a3	X→M	-0.238^**	-0.406	-0.070	0.086	-2.783	0.006
Effective health information acquisition→ Hemophilia-related health literacy	b3	M→Y	0.237^**	0.064	0.410	0.088	2.687	0.007
Registered residence location →Hemophilia-related health literacy	c'3	Direct effect	-0.599^**	-1.033	-0.166	0.221	-2.717	0.007
Registered residence location →Hemophilia-related health literacy	c3	Total effect	-0.656^**	-1.089	-0.223	0.220	-2.975	0.003

表5

参考文献 17

1	国家卫生健康委员会办公厅. 儿童血友病诊疗规范(2019年版)[J]. 全科医学临床与教育, 2020, 18 (1): 4- 9.
2	刘颖, 赵宏, 陈丽霞, 等. 成年血友病患者生活质量及其影响因素分析[J]. 中国康复, 2017, 32 (1): 33- 36.
3	Azeredo-da-Silva AF , Zanotto BS , Kuwabara YS , et al. Quality of life in children and adolescents with hemophilia A: A systematic review and meta-analysis[J]. Res Pract Thromb Haemost, 2023, 7 (1): 100008.
4	Nutbeam D , Muscat DM . Health promotion glossary 2021[J]. Health Promot Int, 2021, 36 (6): 1578- 1598. doi: 10.1093/heapro/daaa157
5	李萌, 张鑫, 周雪梅, 等. 健康素养对心力衰竭患者预后影响的Meta分析[J]. 老年医学研究, 2024, 5 (1): 25- 30.
6	Berkman ND , Sheridan SL , Donahue KE , et al. Low health literacy and health outcomes: An updated systematic review[J]. Ann Intern Med, 2011, 155 (2): 97- 107. doi: 10.7326/0003-4819-155-2-201107190-00005
7	Zaidman EA , Scott KM , Hahn D , et al. Impact of parental health literacy on the health outcomes of children with chronic disease globally: A systematic review[J]. J Paediatrics Child Health, 2023, 59 (1): 12- 31. doi: 10.1111/jpc.16297
8	穆扎帕尔·麦麦提阿卜杜拉, 陈蕴, 雷瑞玲, 等. 新疆1型糖尿病患儿的家庭照护负担对患儿生存质量的影响: 照护能力的中介效应分析[J]. 中华糖尿病杂志, 2025, 17 (3): 351- 359.
9	郭庆光. 传播学教程[M]. 2版北京: 中国人民大学出版社, 2011: 4.
10	林雨欣, 杨仁池, 陈蓉, 等. 中国血友病患者疾病相关健康素养现状及影响因素研究[J]. 中国健康教育, 2025, 41 (9): 771-776, 782.
11	Razmpoosh E , Olasupo OO , Bhatt M , et al. Clotting factor concentrates for preventing bleeding and bleeding-related complications in previously untreated or minimally treated children with hemophilia A or B[J]. Cochrane Database Syst Rev, 2025, 8 (8): Cd003429.
12	李月琳, 张秀, 王姗姗. 社交媒体健康信息质量研究: 基于真伪健康信息特征的分析[J]. 情报学报, 2018, 37 (3): 294- 304.
13	任苻友, 周心燕, 沈黛珺, 等. 基于抖音平台的艾滋病相关短视频质量评价[J]. 中国艾滋病性病, 2025, 31 (10): 1099- 1105.
14	薛翔, 马海云, 赵宇翔, 等. 用户感知视角下的健康信息质量评估研究: 以短视频平台为例[J]. 图书与情报, 2022, 42 (2): 69- 79.
15	李英华, 李莉, 王兰兰. 2012-2023年中国居民健康素养水平分析[J]. 中国健康教育, 2025, 41 (5): 426- 430.
16	石建辉, 齐力, 徐露婷, 等. 2012-2022年北京市女性居民健康素养水平及其影响因素分析[J]. 中国健康教育, 2026, 42 (1): 66- 71.
17	WHO, Commission on SDH. Closing the gap in a generation: Health equity through action on the social determinants of health[EB/OL]. (2008-08-27)[2026-02-01]. https://www.who.int/publications/i/item/WHO-IER-CSDH-08.1.

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Items	Adequacy rate/%	Score, $\bar x \pm s$
Overall hemophilia-related health literacy	20.68	11.87±2.92
Hemophilia-related basic knowledge	32.13
Pathogenesis		0.98±0.15
Target joints		0.69±0.95
Awareness of high-risk situations		0.94±0.24
Medication contraindications		0.85±0.36
Vaccination considerations		0.83±0.38
Health education material comprehension	58.64
Clinical characteristics		0.82±0.38
Symptom recognition		1.2±0.98
Surgical risks		0.96±0.20
Prophylactic treatment		0.94±0.24
Risks of inhibitors		0.94±0.24
Medication label literacy	16.82
Dosage calculation for injections		0.53±0.50
Medication reconstitution		0.67±0.47
Treatment duration estimation		0.26±0.44
On-demand treatment		0.77±0.42
Auxiliary hemostatic measures		0.50±0.87

Variables	Effective health information acquisition score, $\bar x \pm s$	Utilization rate/%	Acceptance score, $\bar x \pm s$	Credibility score, $\bar x \pm s$	Professionalism score, $\bar x \pm s$
Overall effective health information acquisition channel	34.43±16.50		3.12±0.89	3.17±0.87	3.07±0.87
Medical doctors/nurses channel	6.29±2.87	97.5	4.34±1.00	4.33±1.04	4.34±1.04
NGO (Hemophilia patient channelorganizations, etc.)	5.61±2.85	95.8	3.80±1.11	3.88±1.16	3.72±1.18
Social media channel(WeChat/Weibo/Zhihu, etc.)	3.52±2.70	88.2	2.84±1.22	2.91±1.28	2.77±1.28
Official agencies/Academicinstitutions channel	3.45±2.97	79.8	3.66±1.37	3.71±1.41	3.61±1.44
Search engines channel(Baidu/Sogou, etc.)	3.02±2.34	88.7	2.68±1.22	2.87±1.38	2.66±1.27
Family members/Friends channel	2.78±2.50	82.6	2.69±1.26	2.87±1.38	2.51±1.35
Health-specific digital platforms channel (DingXiangYuan, etc.)	2.76±2.65	76.9	3.19±1.32	3.16±1.37	3.20±1.37
Newspapers/Magazines/Television/Radio/Books channel	2.47±2.41	78.9	2.93±1.32	2.97±1.40	2.89±1.40
Apps /Digital platforms channel(Tencent news/Toutiao, etc.)	2.30±2.27	79.6	2.77±1.29	2.84±1.34	2.69±1.36
Short-video platforms channel(TikTok/Kuaishou, etc.)	2.23±2.28	77.2	2.33±1.23	2.36±1.28	2.29±1.28