Article(id=1322168307776606359, tenantId=1146029695717560320, journalId=1220038315760373764, issueId=1322167871413796899, articleNumber=null, orderNo=null, doi=10.12102/j.issn.1009-6493.2026.03.005, pmid=null, cstr=null, oa=null, hot=null, price=null, onlineType=0, articleFormat=0, articleType=null, articleTypeStr=null, receivedDate=1733932800000, receivedDateStr=2024-12-12, revisedDate=1762617600000, revisedDateStr=2025-11-09, acceptedDate=null, acceptedDateStr=null, onlineDate=1793159089272, onlineDateStr=2026-10-28, pubDate=1770652800000, pubDateStr=2026-02-10, doiRegisterDate=null, doiRegisterDateStr=null, onlineIssueDate=1793159089272, onlineIssueDateStr=2026-10-28, onlineJustAcceptDate=null, onlineJustAcceptDateStr=null, onlineFirstDate=null, onlineFirstDateStr=null, sourceXml=null, magXml=null, createTime=1793159089272, creator=13701087609, updateTime=1793159089272, updator=13701087609, issue=Issue{id=1322167871413796899, tenantId=1146029695717560320, journalId=1220038315760373764, year='2026', volume='40', issue='3', pageStart='353', pageEnd='528', issueExtLink='null', onlineDate='null', pubDate='1770652800000', pubDateStr='2026-02-10', beforeIssueId=null, nextIssueId=null, price=null, status=1, issueComplete=1, articleOrder=1, issueType=-1, specialIssue=null, createTime=1793158985236, creator='13701087609', updateTime=1793158985236, updator='13701087609', preIssue=null, nextIssue=null, articleTotal=null, ext=null, issueFiles=null, downloadFileDto=null}, startPage=383, endPage=389, ext={EN=ArticleExt(id=1322168308015681690, articleId=1322168307776606359, tenantId=1146029695717560320, journalId=1220038315760373764, language=EN, title=Latent profile analysis of financial toxicity in caregivers of children withsevere β-Thalassaemia and its influencing factors, columnId=1220689484526572183, journalTitle=Chinese Nursing Research, columnName=Original Articles, runingTitle=null, highlight=null, articleAbstract=
Objective

To explore the potential categories of financial toxicity in caregivers of children with severe β-Thalassaemia,and to analyze the influencing factors of different potential categories,so as to provide reference for the formulation of targeted and individualized intervention programs.

Methods

Convenience sampling method was used to select 228 caregivers of children with severe β-Thalassaemia who were treated in a grade A tertiary hospital in Guangxi as survey subjects.The General Information Questionnaire,the Cancer Family Caregiver Financial Toxicity Scale,Connor and Davidson's Resilience Scale(CD-RISC),Social Support Rating Scale were used for investigation.The latent profile analysis was used to determine the category.The influencing factors of different profiles were analyzed by single factor analysis and Logistic regression analysis.

Results

The financial toxicity of the caregivers of children with severe β-Thalassaemia were classified into three categories:low resources and high stress,medium resources and balanced coping,and high resources and active coping.Logistic regression analysis results showed that family monthly income,course of disease,payment method of medical expenses,caregivers' social support level and caregivers' psychological resilience level were the influencing factors of the potential profile of financial toxicity of caregivers of children with severe β-Thalassaemia.

Conclusions

There was obvious heterogeneity in the financial toxicity level of caregivers of children with severe β-Thalassaemia.Medical staff should implement targeted interventions based on the characteristics and influencing factors of the different categories,so as to reduce the financial toxicity of caregivers.

, authors=Yingxin LIU, Xiufen SHANG, Junfei CHEN, Qingmei LU, Shan WANG, Yue LIU, authorsList=Yingxin LIU, Xiufen SHANG, Junfei CHEN, Qingmei LU, Shan WANG, Yue LIU, authorCompany=null, correspAuthors=Qingmei LU, authorNote=null, correspAuthorsNote=
LU Qingmei, E-mail:
, copyrightStatement=null, copyrightOwner=null, extLink=null, articleAbsUrl=null, sourceXml=null, magXml=null, pdfUrl=null, pdf=null, pdfFileSize=null, pdfExtLink=null, richHtmlUrl=null, mobilePdfUrl=null, reviewReport=null, pdfFirstPage=null, abstractGraph=null, abstractGraphContent=null, abstractVideo=null, citation=null, cebUrl=null, magXmlContent=null, mapNumber=null, fund=null), CN=ArticleExt(id=1322168310268022942, articleId=1322168307776606359, tenantId=1146029695717560320, journalId=1220038315760373764, language=CN, title=重型β-地中海贫血患儿照顾者经济毒性潜在剖面分析及影响因素, columnId=1220689484681761433, journalTitle=护理研究, columnName=科研论著, runingTitle=null, highlight=null, articleAbstract=
目的

探讨重型β-地中海贫血(β-TM)患儿照顾者经济毒性的潜在类别及其影响因素,为制定针对性、个性化的干预方案提供参考。

方法

采用便利抽样法,选取广西某3所三级甲等医院住院治疗的228名重型β-地中海贫血患儿照顾者为调查对象。采用一般资料调查表、癌症家庭照顾者经济毒性量表、心理弹性量表、社会支持评定量表进行调查。运用潜在剖面分析确定类别,通过单因素分析和Logistic回归分析不同剖面的影响因素。

结果

重型β-地中海贫血患儿照顾者的经济毒性可分为低资源与高压力型、中等资源与平衡应对型、高资源与积极应对型3个类别。Logistic回归分析结果显示,患儿病程、家庭月收入、医疗费用支付方式、照顾者社会支持水平、照顾者心理弹性水平是重型β-地中海贫血患儿照顾者经济毒性潜在剖面的影响因素。

结论

重型β-地中海贫血患儿照顾者经济毒性水平存在明显异质性,医护人员应根据不同类别的特征和影响因素,实施针对性、个性化的干预措施,以期减轻照顾者的经济毒性。

, authors=刘颖欣, 尚秀纷, 陈俊妃, 陆青梅*, *, 王杉, 刘月, authorsList=刘颖欣, 尚秀纷, 陈俊妃, 陆青梅, 王杉, 刘月, authorCompany=null, correspAuthors=陆青梅, authorNote=

刘颖欣,护士,硕士研究生在读

, correspAuthorsNote=
陆青梅,E-mail:
LU Qingmei, E-mail:
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companyList=[AuthorCompany(id=1322530210315092554, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, xref=1, ext=[AuthorCompanyExt(id=1322530210331869771, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, companyId=1322530210315092554, language=EN, country=null, province=null, city=null, postcode=null, companyName=null, departmentName=null, remark=1Youjiang Medical University for Nationalities, Guangxi 533000 China), AuthorCompanyExt(id=1322530210352841292, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, companyId=1322530210315092554, language=CN, country=null, province=null, city=null, postcode=null, companyName=null, departmentName=null, remark=1右江民族医学院,广西 533000)])], figs=[ArticleFig(id=1322530215562166907, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=EN, label=Figure 1, caption=Three potential categories of financial toxicity for caregivers of children with severe β-Thalassaemia, figureFileSmall=z4Jjhs7lhjziUgxNlM9jDA==, figureFileBig=s/gxykcyLV09s5AqHbgNig==, tableContent=null), ArticleFig(id=1322530215667024508, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=CN, label=图1, caption=重型β-地中海贫血患儿照顾者经济毒性的3个潜在类别, figureFileSmall=z4Jjhs7lhjziUgxNlM9jDA==, figureFileBig=s/gxykcyLV09s5AqHbgNig==, tableContent=null), ArticleFig(id=1322530215788659325, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=EN, label=Table 1, caption=

Latent profile model fitting results of financial toxicity for caregivers of children with severe β-Thalassaemia

, figureFileSmall=null, figureFileBig=null, tableContent=
模型AICBICaBICEntropyP类别概率
LMRTBLRT
模型12 554.4572 588.7512 557.058
模型21 842.4021 897.2711 846.5620.995<0.001<0.0010.504 39/0.495 61
模型31 506.3261 581.7711 512.0461.0000.022<0.0010.495 61/0.364 04/0.140 35
模型41 422.2891 518.3111 429.5700.9620.149<0.0010.364 06/0.237 15/0.258 46/0.140 32
), ArticleFig(id=1322530215872545406, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=CN, label=表1, caption=

重型β-地中海贫血患儿照顾者经济毒性潜在剖面模型拟合结果

, figureFileSmall=null, figureFileBig=null, tableContent=
模型AICBICaBICEntropyP类别概率
LMRTBLRT
模型12 554.4572 588.7512 557.058
模型21 842.4021 897.2711 846.5620.995<0.001<0.0010.504 39/0.495 61
模型31 506.3261 581.7711 512.0461.0000.022<0.0010.495 61/0.364 04/0.140 35
模型41 422.2891 518.3111 429.5700.9620.149<0.0010.364 06/0.237 15/0.258 46/0.140 32
), ArticleFig(id=1322530215960625791, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=EN, label=Table 2, caption=

Univariate analysis of influencing factors on potential profile of financial toxicity for caregivers of children with severe β-Thalassaemia

, figureFileSmall=null, figureFileBig=null, tableContent=
对象项目分类低资源与高压力型(n=113)中等资源与平衡应对型(n=83)高资源与积极应对型(n=32)统计值P
照顾者性别[人(%)]男48(42.48)26(31.33)7(21.88)χ2=5.6270.060
女65(57.52)57(68.67)25(78.12)
年龄[人(%)]≤30岁6(5.31)3(3.61)3(9.38)0.649①
31~40岁72(63.72)50(60.24)18(56.25)
41~50岁21(18.58)22(26.51)6(18.75)
≥51岁14(12.39)8(9.64)5(15.63)
文化程度[人(%)]小学及以下29(25.66)18(21.69)6(18.75)0.048①
初中69(61.06)48(57.83)20(62.50)
中专及高中10(8.85)15(18.07)1(3.13)
专科及以上5(4.43)2(2.41)5(15.63)
婚姻状况[人(%)]已婚85(75.22)72(86.75)30(93.75)0.062①
离婚23(20.35)8(9.64)1(3.13)
丧偶5(4.43)3(3.61)1(3.13)
职业[人(%)]农民65(57.52)39(46.99)5(15.63)<0.001①
工人42(37.17)38(45.78)8(25.00)
公务员1(0.89)1(1.21)6(18.75)
个体户2(1.77)4(4.82)12(37.50)
其他3(2.66)1(1.21)1(3.13)
家庭月收入[人(%)]≤2 000元46(40.71)23(27.71)5(15.63)χ2=53.074<0.001
2 001~3 000元54(47.79)32(38.55)3(9.38)
3 001~4 000元6(5.31)15(18.07)10(31.25)
>4 000元7(6.20)13(15.66)14(43.75)
长期居住地[人(%)]城市20(17.70)16(19.28)4(12.50)χ2=1.6980.791
乡镇30(26.55)17(20.48)9(28.13)
农村63(55.75)50(60.24)19(59.38)
到达医疗机构乘车时间[人(%)]<60 min23(20.35)20(24.10)9(28.13) χ2=1.8640.932
60~120 min57(50.44)42(50.60)13(40.63)
121~180 min18(15.93)11(13.25)6(18.75)
>180 min15(13.27)10(12.05)4(12.50)
与患儿关系[人(%)]父亲37(32.74)20(24.10)7(21.88)0.303①
母亲61(53.98)54(65.06)25(78.13)
爷爷/外公10(8.85)5(6.02)0(0.00)
奶奶/外婆4(3.54)2(2.41)0(0.00)
其他1(0.89)2(2.41)0(0.00)
心理弹性量表得分(分)97.91±16.2079.20±20.5060.61±16.44F=62.319<0.001
社会支持评定量表得分(分)52.38±7.8743.54±7.8032.29±10.06F=77.206<0.001
患儿独生子女[例(%)]是31(27.43)18(21.69)5(15.63)χ2=2.2120.331
否82(72.57)65(78.31)27(84.38)
病程[例(%)]<5年3(2.66)7(8.43)8(25.00)χ2=17.8430.001
5~<10年49(43.36)36(43.37)13(40.63)
≥10年61(53.98)40(48.19)11(34.38)
输血间隔时间[例(%)]<14 d57(50.44)29(34.94)13(40.63)χ2=12.3730.015
14~<30 d48(42.48)34(40.96)14(43.75)
≥30 d8(7.08)20(24.10)5(15.63)
规律祛铁治疗[例(%)]是58(51.33)46(55.42)17(53.13)χ2=0.3220.851
否55(48.67)37(44.58)15(46.88)
合并并发症[例(%)]是71(62.83)54(65.06)13(40.63)χ2=6.2700.043
否42(37.17)29(34.94)19(59.38)
医疗费用支付方式[例(%)]自费62(54.87)14(16.87)3(9.38)χ2=41.017<0.001
医保51(45.13)69(83.13)29(90.63)
), ArticleFig(id=1322530216052900480, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=CN, label=表2, caption=

重型β-地中海贫血患儿照顾者经济毒性潜在类别影响因素的单因素分析

, figureFileSmall=null, figureFileBig=null, tableContent=
对象项目分类低资源与高压力型(n=113)中等资源与平衡应对型(n=83)高资源与积极应对型(n=32)统计值P
照顾者性别[人(%)]男48(42.48)26(31.33)7(21.88)χ2=5.6270.060
女65(57.52)57(68.67)25(78.12)
年龄[人(%)]≤30岁6(5.31)3(3.61)3(9.38)0.649①
31~40岁72(63.72)50(60.24)18(56.25)
41~50岁21(18.58)22(26.51)6(18.75)
≥51岁14(12.39)8(9.64)5(15.63)
文化程度[人(%)]小学及以下29(25.66)18(21.69)6(18.75)0.048①
初中69(61.06)48(57.83)20(62.50)
中专及高中10(8.85)15(18.07)1(3.13)
专科及以上5(4.43)2(2.41)5(15.63)
婚姻状况[人(%)]已婚85(75.22)72(86.75)30(93.75)0.062①
离婚23(20.35)8(9.64)1(3.13)
丧偶5(4.43)3(3.61)1(3.13)
职业[人(%)]农民65(57.52)39(46.99)5(15.63)<0.001①
工人42(37.17)38(45.78)8(25.00)
公务员1(0.89)1(1.21)6(18.75)
个体户2(1.77)4(4.82)12(37.50)
其他3(2.66)1(1.21)1(3.13)
家庭月收入[人(%)]≤2 000元46(40.71)23(27.71)5(15.63)χ2=53.074<0.001
2 001~3 000元54(47.79)32(38.55)3(9.38)
3 001~4 000元6(5.31)15(18.07)10(31.25)
>4 000元7(6.20)13(15.66)14(43.75)
长期居住地[人(%)]城市20(17.70)16(19.28)4(12.50)χ2=1.6980.791
乡镇30(26.55)17(20.48)9(28.13)
农村63(55.75)50(60.24)19(59.38)
到达医疗机构乘车时间[人(%)]<60 min23(20.35)20(24.10)9(28.13) χ2=1.8640.932
60~120 min57(50.44)42(50.60)13(40.63)
121~180 min18(15.93)11(13.25)6(18.75)
>180 min15(13.27)10(12.05)4(12.50)
与患儿关系[人(%)]父亲37(32.74)20(24.10)7(21.88)0.303①
母亲61(53.98)54(65.06)25(78.13)
爷爷/外公10(8.85)5(6.02)0(0.00)
奶奶/外婆4(3.54)2(2.41)0(0.00)
其他1(0.89)2(2.41)0(0.00)
心理弹性量表得分(分)97.91±16.2079.20±20.5060.61±16.44F=62.319<0.001
社会支持评定量表得分(分)52.38±7.8743.54±7.8032.29±10.06F=77.206<0.001
患儿独生子女[例(%)]是31(27.43)18(21.69)5(15.63)χ2=2.2120.331
否82(72.57)65(78.31)27(84.38)
病程[例(%)]<5年3(2.66)7(8.43)8(25.00)χ2=17.8430.001
5~<10年49(43.36)36(43.37)13(40.63)
≥10年61(53.98)40(48.19)11(34.38)
输血间隔时间[例(%)]<14 d57(50.44)29(34.94)13(40.63)χ2=12.3730.015
14~<30 d48(42.48)34(40.96)14(43.75)
≥30 d8(7.08)20(24.10)5(15.63)
规律祛铁治疗[例(%)]是58(51.33)46(55.42)17(53.13)χ2=0.3220.851
否55(48.67)37(44.58)15(46.88)
合并并发症[例(%)]是71(62.83)54(65.06)13(40.63)χ2=6.2700.043
否42(37.17)29(34.94)19(59.38)
医疗费用支付方式[例(%)]自费62(54.87)14(16.87)3(9.38)χ2=41.017<0.001
医保51(45.13)69(83.13)29(90.63)
), ArticleFig(id=1322530216132592257, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=EN, label=Table 3, caption=

Variable assignment

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自变量赋值方式
照顾者文化程度小学及以下=1,初中=2,中专及高中=3,专科及以上=4
照顾者职业农民=(0,0,0,0),工人=(1,0,0,0),公务员=(0,1,0,0),个体户=(0,0,1,0),其他=(0,0,0,1)
照顾者家庭月收入≤2 000元=4,2 001~3 000元=3,3 001~4 000元=2,>4 000元=1
患儿病程≥10年=1,5~<10年=2,<5年=3
患儿输血间隔时间<14 d=1,14~<30 d=2,≥30 d=3
患儿合并并发症是=1,否=2
患儿医疗费用支付方式医保=1,自费=2
照顾者社会支持评定量表得分原值输入
照顾者心理弹性量表得分原值输入
), ArticleFig(id=1322530216208089730, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=CN, label=表3, caption=

变量赋值情况

, figureFileSmall=null, figureFileBig=null, tableContent=
自变量赋值方式
照顾者文化程度小学及以下=1,初中=2,中专及高中=3,专科及以上=4
照顾者职业农民=(0,0,0,0),工人=(1,0,0,0),公务员=(0,1,0,0),个体户=(0,0,1,0),其他=(0,0,0,1)
照顾者家庭月收入≤2 000元=4,2 001~3 000元=3,3 001~4 000元=2,>4 000元=1
患儿病程≥10年=1,5~<10年=2,<5年=3
患儿输血间隔时间<14 d=1,14~<30 d=2,≥30 d=3
患儿合并并发症是=1,否=2
患儿医疗费用支付方式医保=1,自费=2
照顾者社会支持评定量表得分原值输入
照顾者心理弹性量表得分原值输入
), ArticleFig(id=1322530216279392899, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=EN, label=Table 4, caption=

Multivariate Logistic regression analysis results of influencing factors on potential profile of financial toxicity for caregivers of children with severe β-Thalassaemia

, figureFileSmall=null, figureFileBig=null, tableContent=
潜在类别变量回归系数标准误Wald χ2值POR值95%CI
中等资源与平衡应对型常数-4.2682.2903.4730.062
家庭月收入-1.7030.7605.0250.0250.182[0.041,0.807]
患儿医疗费用支付方式-2.2260.51418.718<0.0010.108[0.039,0.296]
社会支持水平0.1470.03023.617<0.0011.159[1.092,1.230]
心理弹性水平0.0450.0168.4340.0041.047[1.015,1.079]
高资源与积极应对型常数-7.6513.9813.6940.055
家庭月收入-4.0261.1714.824<0.0010.018[0.002,0.177]
病程3.2081.5314.3920.03624.741[1.231,497.285]
患儿医疗费用支付方式-2.9961.1436.8660.0090.050[0.005,0.470]
社会支持水平0.2170.06810.233<0.0011.242[1.088,1.418]
心理弹性水平0.0880.0318.1800.0041.091[1.028,1.159]
), ArticleFig(id=1322530216359084676, tenantId=1146029695717560320, journalId=1220038315760373764, articleId=1322168307776606359, language=CN, label=表4, caption=

重型β-地中海贫血患儿照顾者经济毒性潜在类别影响因素的多因素Logistic回归分析结果

, figureFileSmall=null, figureFileBig=null, tableContent=
潜在类别变量回归系数标准误Wald χ2值POR值95%CI
中等资源与平衡应对型常数-4.2682.2903.4730.062
家庭月收入-1.7030.7605.0250.0250.182[0.041,0.807]
患儿医疗费用支付方式-2.2260.51418.718<0.0010.108[0.039,0.296]
社会支持水平0.1470.03023.617<0.0011.159[1.092,1.230]
心理弹性水平0.0450.0168.4340.0041.047[1.015,1.079]
高资源与积极应对型常数-7.6513.9813.6940.055
家庭月收入-4.0261.1714.824<0.0010.018[0.002,0.177]
病程3.2081.5314.3920.03624.741[1.231,497.285]
患儿医疗费用支付方式-2.9961.1436.8660.0090.050[0.005,0.470]
社会支持水平0.2170.06810.233<0.0011.242[1.088,1.418]
心理弹性水平0.0880.0318.1800.0041.091[1.028,1.159]
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重型β-地中海贫血患儿照顾者经济毒性潜在剖面分析及影响因素
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刘颖欣 , 尚秀纷 , 陈俊妃 , 陆青梅 *, * , 王杉 , 刘月
护理研究 | 科研论著 2026,40(3): 383-389
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护理研究 |科研论著 2026 , 40 (3) : 383 -389
重型β-地中海贫血患儿照顾者经济毒性潜在剖面分析及影响因素
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刘颖欣, 尚秀纷, 陈俊妃, 陆青梅*, * , 王杉, 刘月
作者信息
  • 1右江民族医学院,广西 533000
通讯作者:
陆青梅,E-mail:
LU Qingmei, E-mail:
作者简介:

刘颖欣,护士,硕士研究生在读

Latent profile analysis of financial toxicity in caregivers of children withsevere β-Thalassaemia and its influencing factors
Yingxin LIU, Xiufen SHANG, Junfei CHEN, Qingmei LU , Shan WANG, Yue LIU
Affiliations
  • 1Youjiang Medical University for Nationalities, Guangxi 533000 China
  • Corresponding Author:
    LU Qingmei, E-mail:
出版时间: 2026-02-10 doi: 10.12102/j.issn.1009-6493.2026.03.005
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目的

探讨重型β-地中海贫血(β-TM)患儿照顾者经济毒性的潜在类别及其影响因素,为制定针对性、个性化的干预方案提供参考。

方法

采用便利抽样法,选取广西某3所三级甲等医院住院治疗的228名重型β-地中海贫血患儿照顾者为调查对象。采用一般资料调查表、癌症家庭照顾者经济毒性量表、心理弹性量表、社会支持评定量表进行调查。运用潜在剖面分析确定类别,通过单因素分析和Logistic回归分析不同剖面的影响因素。

结果

重型β-地中海贫血患儿照顾者的经济毒性可分为低资源与高压力型、中等资源与平衡应对型、高资源与积极应对型3个类别。Logistic回归分析结果显示,患儿病程、家庭月收入、医疗费用支付方式、照顾者社会支持水平、照顾者心理弹性水平是重型β-地中海贫血患儿照顾者经济毒性潜在剖面的影响因素。

结论

重型β-地中海贫血患儿照顾者经济毒性水平存在明显异质性,医护人员应根据不同类别的特征和影响因素,实施针对性、个性化的干预措施,以期减轻照顾者的经济毒性。

重型β-地中海贫血  /  经济毒性  /  儿童  /  照顾者  /  社会支持  /  心理弹性  /  潜在剖面分析  /  影响因素
Objective

To explore the potential categories of financial toxicity in caregivers of children with severe β-Thalassaemia,and to analyze the influencing factors of different potential categories,so as to provide reference for the formulation of targeted and individualized intervention programs.

Methods

Convenience sampling method was used to select 228 caregivers of children with severe β-Thalassaemia who were treated in a grade A tertiary hospital in Guangxi as survey subjects.The General Information Questionnaire,the Cancer Family Caregiver Financial Toxicity Scale,Connor and Davidson's Resilience Scale(CD-RISC),Social Support Rating Scale were used for investigation.The latent profile analysis was used to determine the category.The influencing factors of different profiles were analyzed by single factor analysis and Logistic regression analysis.

Results

The financial toxicity of the caregivers of children with severe β-Thalassaemia were classified into three categories:low resources and high stress,medium resources and balanced coping,and high resources and active coping.Logistic regression analysis results showed that family monthly income,course of disease,payment method of medical expenses,caregivers' social support level and caregivers' psychological resilience level were the influencing factors of the potential profile of financial toxicity of caregivers of children with severe β-Thalassaemia.

Conclusions

There was obvious heterogeneity in the financial toxicity level of caregivers of children with severe β-Thalassaemia.Medical staff should implement targeted interventions based on the characteristics and influencing factors of the different categories,so as to reduce the financial toxicity of caregivers.

severe β-Thalassaemia  /  financial toxicity  /  children  /  caregivers  /  social support  /  psychological resilience  /  latent profile analysis  /  influencing factor
刘颖欣, 尚秀纷, 陈俊妃, 陆青梅, 王杉, 刘月. 重型β-地中海贫血患儿照顾者经济毒性潜在剖面分析及影响因素. 护理研究, 2026 , 40 (3) : 383 -389 . DOI: 10.12102/j.issn.1009-6493.2026.03.005
Yingxin LIU, Xiufen SHANG, Junfei CHEN, Qingmei LU, Shan WANG, Yue LIU. Latent profile analysis of financial toxicity in caregivers of children withsevere β-Thalassaemia and its influencing factors[J]. Chinese Nursing Research, 2026 , 40 (3) : 383 -389 . DOI: 10.12102/j.issn.1009-6493.2026.03.005
重型β-地中海贫血(β-thalassemia major,β-TM)是一种遗传性单基因疾病,其发病原因主要是β-珠蛋白基因缺失或突变使血红蛋白成分异常,从而出现慢性溶血性贫血[1]。研究显示,全球每年有数以万计的重型β-地中海贫血患儿出生,重型β-地中海贫血已成为医疗卫生系统日益关注的疾病之一[2]。治疗重型β-地中海贫血需要长期输血和规律祛铁[3],给患儿家庭带来巨大的经济压力。且患儿年龄较小,缺乏自我管理能力,其护理和治疗均依赖照顾者。因此,照顾者不仅肩负沉重的照顾职责,还要面对昂贵的治疗费用。经济毒性是指在慢性病的长期治疗过程中,病人及其家庭所承受的医疗费用带来的负面影响,包括客观的经济负担和主观的经济困扰[4]。照顾者的经济毒性水平会影响病人的依从性及生活质量密切相关[5]。研究显示,主要以评价量表总分的高低判断调查对象经济毒性水平,忽略了个体间的差异,为精准护理的实施带来了不便[6-8]。潜在剖面分析(latent profile analysis,LPA)是一种侧重个体为中心,依据个体在外显变量上展现的反应模式,对群体异质性进行归类的统计方法[9]。本研究采用潜在剖面分析方法,探讨重型β-地中海贫血患儿照顾者经济毒性的潜在类别特征并分析其影响因素,旨在为后续制定个性化的经济毒性管理方案提供依据。
2023年12月—2024年7月,采用便利抽样法,选取广西某3所三级甲等医院住院治疗的重型β-地中海贫血患儿照顾者为研究对象。患儿纳入标准:1)符合《中国输血依赖型β地中海贫血诊断与治疗指南(2022年版)》[1]诊断标准;2)年龄≤14岁,接受治疗时间≥1年。照顾者纳入标准:1)为患儿的主要照顾者,负责患儿衣食住行,每日照顾时间≥4 h;2)年龄≥18岁;3)精神状态正常,思维敏捷,具有良好的语言沟通与表达能力;4)自愿参加本研究。照顾者排除标准:1)家庭雇佣照顾者;2)语言沟通障碍,无法正常进行交谈,不能配合完成本研究。根据Kendall样本量计算法,纳入样本量应为变量数的5~10倍[10]。本研究包含17个变量,考虑20%脱落率,所需样本量为102~204例。为保证模型的精准度及检验效能,本研究共发放问卷230份,回收有效问卷228份,有效回收率为99.13%。本研究已获得右江民族医学院伦理委员会审批(审批号:2023122607)。
在文献回顾的基础上,由课题组成员讨论形成,包括照顾者信息及患儿信息。1)照顾者信息:性别、年龄、婚姻状况、与患儿关系、文化程度、职业、到达医疗机构乘车时间、家庭月收入、长期居住地;2)患儿信息:是否为独生子女、病程、输血间隔时间、是否进行规律祛铁治疗、是否合并并发症、医疗费用支付方式。
采用癌症家庭照顾者经济毒性量表评价患儿照顾者经济毒性水平,该量表由刘艳玲等[11]编制,包括经济支出、经济资源、心理社会反应、治疗及生活改变、支持寻求5个维度,共16个条目。各条目采用Likert 5级评分法,“非常不同意”计1分,“不同意”计2分,“无意见”计3分,“同意”计4分,“非常同意”计5分。其中,条目1、条目6采用反向计分,其余采用正向计分。总分16~80分,得分越高表明照顾者经济毒性越严重。本研究中该量表的Cronbach's α系数为0.870。
采用心理弹性量表评估照顾者心理弹性水平,该量表由Connor等[12]编制,Yu等[13]于2007年进行汉化并修订,包括坚韧、自强、乐观3个维度,共25个条目。各条目采用Likert 5级评分法,计0~4分,总分0~100分,得分越高,表示心理弹性水平越好。本研究中该量表的Cronbach's α系数为0.970。
采用社会支持评定量表评估照顾者社会支持水平,该量表由肖水源[14]研制,包括客观支持、主观支持以及对支持的利用度3个维度,共10个条目。量表总分12~66分,得分越高,表明社会支持水平越高。该量表的Cronbach's α系数为0.896[15]。本研究中该量表的Cronbach's α系数为0.752。
研究人员采用标准化的指导语向调查对象详细阐述研究目的、意义、注意事项等,获得其知情同意后发放问卷,指导其自行填写。对于填写困难的对象,研究者采用口头叙述的方式,并根据调查对象的回答代为填写问卷。问卷回收后,立刻检查填写质量,如有疑问及时询问核实。
采用Mplus 8.3软件进行潜在剖面分析。以癌症家庭照顾者经济毒性量表各维度均分作为外显指标。从假设潜在类别为1的初始模型开始,逐渐增加类别数,比较各模型拟合效果,选择最佳类别模型。在此基础上,采用SPSS 26.0软件对数据进行统计描述,采用χ2检验、Fisher确切概率法、单因素方差分析筛选不同类别人群间差异有统计学意义的指标,采用无序多分类Logistic回归分析进一步探讨影响因素,以P<0.05为有统计学意义。
重型β-地中海贫血患儿照顾者癌症家庭照顾者经济毒性量表得分为(19.79±2.57)分;条目均分为(3.94±0.61)分,其中经济支出(4.14±0.82)分,经济资源(3.76±0.84)分,心理社会反应(3.65±0.73)分,治疗及生活改变(3.94±1.08)分,支持寻求(4.29±0.40)分;心理弹性量表得分为(72.61±22.33)分;社会支持评定量表得分为(39.21±11.64)分。
以家庭照顾者经济毒性量表的5个维度均分进行潜在剖面分析,结果显示,艾凯克信息准则(AIC)、贝叶斯信息准则(BIC)、样本校正的BIC(aBIC)值随着类别数目的增加而逐渐降低,说明模型拟合逐渐变好,模型3的信息熵(Entropy)值最大,且罗-蒙戴尔-鲁本校正似然比检验指标(LMRT)和基于Bootstrap的似然比检验(BLRT)P<0.05。因此,模型3的拟合效果最好,为最佳模型。详见表1。
根据重型β-地中海贫血患儿照顾者经济毒性3个潜在类别的特征对其进行命名:类别1家庭照顾者经济毒性量表条目均分为(4.39±0.24)分,明显高于其他2组,且经济资源维度均分最高,表明该类别照顾者在经济上经常遇到困难,故命名为“低资源与高压力型”,该类别照顾者113例,占49.6%。类别2经济毒性量表条目均分为(3.69±0.20)分,各维度均分介于类别1、类别3之间,结合其得分特征,命名为“中等资源与平衡应对型”,该类别照顾者83例,占比36.4%。类别3经济毒性量表条目均分为(3.13±0.22)分,且支持寻求维度得分最高,表明此类别照顾者采用积极态度面对患儿病情变化,故命名为“高资源与积极应对型”,该类别照顾者32例,占14.0%。详见图1。
单因素分析结果显示,患儿照顾者文化程度、职业、家庭月收入、心理弹性量表得分、社会支持评定量表得分及患儿病程、输血间隔时间、医疗费用支付方式、合并并发症是重型β-地中海贫血患儿照顾者经济毒性潜在类别的影响因素,差异有统计学意义(P<0.05)。详见表2。
以重型β-地中海贫血患儿照顾者经济毒性潜在剖面为因变量,以低资源与高压力型组为参照,将单因素分析中有统计学意义的变量(患儿照顾者文化程度、职业、家庭月收入、心理弹性量表得分、社会支持评定量表得分及患儿病程、输血间隔时间、医疗费用支付方式、合并并发症)为自变量,进行无序多分类Logistic回归分析。自变量赋值见表3。结果显示,家庭月收入、患儿医疗费用支付方式、照顾者社会支持水平、照顾者心理弹性水平、患儿病程是重型β-地中海贫血患儿照顾者经济毒性潜在剖面的影响因素,详见表4。
本研究潜在类别分析结果发现,重型β-地中海贫血患儿照顾者经济毒性分为3个类别,提示重型β-地中海贫血患儿照顾者经济毒性水平存在明显的异质性。
本研究中低资源与高压力型113人,占49.6%,该类别照顾者在心理社会反应上更容易表现出负面情绪。原因可能是此类别照顾者经济收入相对偏低,加之其获得的外部支持较少,使其要独自面对经济和精神心理上的双重压力。针对此类照顾者,医护人员可借助家庭照顾者经济毒性量表早期识别,并积极提供财务援助信息,减轻照顾者经济负担。
本研究中中等资源与平衡应对型照顾者83人,占36.4%。此类照顾者在经济上能够满足基本健康需求,在面对压力时也以积极态度面对,但偶尔会因为各种因素感到压力。医护人员可通过开展同伴教育等活动实现信息互动,引导其积极面对各种压力,降低其经济毒性水平,促进其向高资源与积极应对型转变。
本研究中高资源与积极应对型32人,占14.0%,该类别照顾者经济资源得分最高,表明其拥有充足的经济支持,能够从容地面对患儿疾病带来的挑战和压力。针对此类照顾者,医务人员应该注意评估其不足之处,采用个性化教育,促进其维持较低的经济毒性水平。
本研究结果显示,家庭月收入低的重型β-地中海贫血患儿照顾者更可能归属于“低资源与高压力型”,与周楠等[16]研究结果相似,家庭月收入越低,照顾者经济毒性水平越高。低收入家庭患儿很难做到定期输血和规律祛铁治疗,患儿更容易出现并发症,增加诊疗及护理成本,加重照顾者的经济负担及心理压力。此外,家庭月收入低的照顾者经济储蓄相对较少,此类照顾者在应对昂贵治疗费用时的缓冲作用小,进而加重其经济毒性。提示医患沟通中要关注关于治疗费用的内容,并融入经济资助等信息,以制定适合患儿且经济毒性更小的治疗方案。
本研究结果显示,与有医保的重型β-地中海贫血患儿照顾者相比,自费的患儿照顾者经济毒性水平更高,与Lee等[17]研究结果一致。研究表明,自付费用的增高可导致经济毒性加剧[18]。重型β-地中海贫血患儿每个月诊疗费用为4 000~6 000元[19],而本研究中重型β-地中海贫血患儿照顾者家庭月收入>4 000元的仅占14.91%,由此可见诊疗费用远超其家庭经济承受能力。祛铁药物用量与患儿体重成正比,随着患儿年龄的增长,其体重逐渐增加,导致所需的诊疗费用也随之增加,进一步加重照顾者的经济负担,增加其经济毒性。随着我国医保政策的不断完善,未来病人及其照顾者的经济毒性可能逐步减轻。对此,医护人员应为照顾者提供详尽的治疗预期成本信息,包括各项检查、药物及治疗费用,同时详细解释医疗保险的报销制度,包括报销范围、比例及流程,以便照顾者能够更加了解并合理规划。
本研究结果显示,患儿病程越短,重型β-地中海贫血患儿照顾者经济毒性水平越低,这与查荣苹等[20]研究结果一致。地中海贫血是一种慢性血液疾病,其治疗方案复杂、周期长,照顾者累积花费的医疗费用随治疗时间延长而增多,且长期持续的监测及护理更是加剧了照顾者的经济毒性。同时,随着患儿年龄的增长,其出现并发症的概率也逐渐上升,照顾者的经济压力和心理负担也随之增加,导致照顾者更容易出现高水平的经济毒性。这提示医护人员应更加重视病程较长的重型β-地中海贫血患儿照顾者人群,早期识别经济毒性高风险人群。
本研究结果显示,照顾者社会支持水平越高,重型β-地中海贫血患儿照顾者经济毒性水平越低,与Baddour等[21]研究结果一致。可能的原因是:社会支持给予照顾者更多精神、心理上的支持,激励照顾者以积极的态度应对压力事件,缓解疾病、经济带来的心理困扰[22]。另外,高度的社会支持可以帮助照顾者获取更多经济来源途径[8],减轻其经济负担,降低经济毒性。因此,医护人员应该重视社会支持对照顾者经济毒性的影响,定期组织同伴交流会,促进重型β-地中海贫血患儿照顾者之间信息交流和情感互动;并完善医院-血站-家庭一体化的延续护理服务,为照顾者提供便利的信息获取平台,以提升其社会支持感。
本研究结果显示,照顾者心理弹性水平越高,重型β-地中海贫血患儿照顾者经济毒性水平越低,与Smith等[23]研究结果相似。研究表明,心理弹性是在个体与环境相互作用中不断变化的动态过程[24]。心理弹性作为一种固有的内在特质,能够在个体遭遇挫折、逆境时发挥保护作用,帮助照顾者在面对患儿疾病变化时保持良好的心理状态,并采用积极有效的应对策略。相反,心理弹性水平低的照顾者在面对患儿病情变化时,由于其缺乏良好的应对能力,往往更容易产生负性情绪,进一步加重其心理负担,增加其经济毒性。对此,医护人员应开展针对性的心理干预,如正念训练、同伴教育等,进而增强其应对能力,提高心理弹性水平。
本研究基于潜在剖面分析将重型β-地中海贫血患儿照顾者经济毒性分为3个潜在类别,并探讨了不同类别的影响因素。提示医护人员应早期识别照顾者经济毒性潜在类别,根据其经济状况和需求制定个性化干预措施,提高其心理弹性水平,并鼓励其充分利用个体、家庭、社会等各方面的资源,减轻其心理负担,以期降低重型β-地中海贫血患儿照顾者经济毒性水平。但本研究具有一定的局限性:本研究数据仅在广西壮族自治区收集,样本量代表性有限,未来可考虑纳入不同地区、不同层级医院的样本,进行多中心、大样本的纵向调查,以便更全面地收集和分析数据,进而更深入地探讨经济毒性的影响因素及其变化趋势。

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doi: 10.12102/j.issn.1009-6493.2026.03.005
  • 接收时间:2024-12-12
  • 首发时间:2026-10-28
  • 出版时间:2026-02-10
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  • 收稿日期:2024-12-12
  • 修回日期:2025-11-09
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    1右江民族医学院,广西 533000

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陆青梅,E-mail:
LU Qingmei, E-mail:
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2种不同金属材料的力学参数
科
Family
属数
Number of
genus
种数
Number of
species
占总种数比例
Percentage of
total species (%)
属
Genus
种数
Number of
species
占总种数比例
Percentage of total
species (%)
鹅膏菌科Amanitaceae 2 11 5.26 鹅膏菌属 Amanita 10 4.78
小菇科 Mycenaceae 2 12 5.74 丝盖伞属 Inocybe 5 2.39
多孔菌科 Polyporaceae 8 14 6.70 蜡蘑属 Laccaria 5 2.39
红菇科 Russulaceae 3 23 11.00 小皮伞属 Marasmius 6 2.87
小菇属 Mycena 11 5.26
光柄菇属 Pluteus 5 2.39
红菇属 Russula 17 8.13
栓菌属 Trametes 5 2.39
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