Journal of Peking University (Health Sciences) ›› 2026, Vol. 58 ›› Issue (3): 584-591. doi: 10.19723/j.issn.1671-167X.2026.03.019

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Impact of effective health information acquisition on hemophilia-related health literacy among caregivers of underage hemophilia patients

Rui YUAN1, Hanxing LIN1,2, Qingbo XU3, Xinran LIU1, Danni SHI3, Chun CHANG1,*(), Junyang CAO3   

  1. 1. Peking University School of Public Health Department of Social Medicine and Health Education, Beijing 100191, China
    2. Beijing Ciyou Child Welfare Research Center, Beijing 100875, China
    3. Pfizer Investment Co., Ltd, Beijing 100010, China
  • Received:2026-03-03 Online:2026-06-18 Published:2026-04-14
  • Contact: Chun CHANG

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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

CLC Number: 

  • R554.1

Table 1

Distribution of demographic characteristics of caregivers for pediatric patients with hemophilia"

Variables n(%)
Kinship Mother 530 (61.9)
Father 237 (27.7)
Other kinships 89 (10.4)
Gender Female 586 (68.5)
Male 270 (31.5)
Age range/years < 30 121 (14.1)
30- < 35 238 (27.8)
35- < 40 237 (27.7)
40- < 45 150 (17.5)
≥45 110 (12.9)
Marital status Married 788 (91.9)
Unmarried/Divorced/Widowed 68 (7.1)
Educational attainment No formal education/Primary school 53 (6.2)
Junior high school 249 (29.1)
Senior high school/Vocational school 198 (23.1)
Associate degree 176 (20.6)
Bachelor’s degree or above 170 (21.0)
Registered residence location Urban 280 (32.7)
Rural 576 (67.3)
Employment status Full-time employed 388 (45.3)
Part-time employed 145 (17.0)
Unemployed 256 (29.9)
Student/Retired/Others 67 (7.8)
Annual household income/yuan ≤100 000 698 (81.4)
>100 000-200 000 132 (15.4)
>200 000 26 (3.2)

Table 2

Hemophilia-related health literacy levels of caregivers of pediatric patients with hemophilia"

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

Table 3

Effective health information acquisition among caregivers of pediatric patients with hemophilia"

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

Table 4

Hemophilia-related health literacy and effective health information acquisition score of caregivers of pediatric patients with hemophilia, stratified by sociodemographic characteristics"

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
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

Figure 1

Mediation model with effective health information acquisition as a mediator * P < 0.05 * * P < 0.01."

Table 5

Mediating role of effective health information acquisition in the association between educational attainment, employment status, registered residence location and hemophilia-related health literacy"

Items Symbol Meaning B 95%CI SE z /t P
Lower limit Upper limit
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
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