以家庭为中心的慢性非传染性疾病管理模式与干预研究进展

郭志冉; 张悦; 周亚冠; 徐小林

doi:10.16462/j.cnki.zhjbkz.2025.08.015

以家庭为中心的慢性非传染性疾病管理模式与干预研究进展

doi: 10.16462/j.cnki.zhjbkz.2025.08.015

郭志冉^{1, 2},
张悦^{1, 2},
周亚冠^{1, 2},
徐小林^{1, 2, 3, ,}

1.
浙江大学公共卫生学院大数据健康科学系，杭州 310058
2.
浙江省智能预防医学重点实验室，杭州 310058
3.
昆士兰大学医学院公共卫生学院流行病与生物统计学系，布里斯班 4072

基金项目:

国家自然科学基金 72474197

详细信息

通讯作者:
徐小林，E-mail: xiaolin.xu@zju.edu.cn

中图分类号: R193
计量
- 文章访问数: 12
- HTML全文浏览量: 2
- PDF下载量: 6
- 被引次数: 0
出版历程
- 收稿日期: 2025-01-09
- 修回日期: 2025-05-22
- 刊出日期: 2025-08-10

Research progress on family-based management strategies and interventions for non-communicable diseases

GUO Zhiran^{1, 2},
ZHANG Yue^{1, 2},
ZHOU Yaguan^{1, 2},
XU Xiaolin^{1, 2, 3
, ,}

1.
Department of Big Data Health Science, School of Public Health, Zhejiang University, Hangzhou 310058, China
2.
Key Laboratory of Intelligent Preventive Medicine of Zhejiang Province, Hangzhou 310058, China
3.
Discipline of Epidemiology and Biostatistics, School of Public Health, Faculty of Medicine, University of Queensland, Brisbane 4072, Australia

Funds:

National Natural Science Foundation of China 72474197

More Information

Corresponding author: XU Xiaolin, E-mail: xiaolin.xu@zju.edu.cn

摘要

摘要: 慢性非传染性疾病(简称慢性病)已成为全球性公共卫生问题，目前我国慢性病患病率持续上升，慢性病管理面临诸多挑战。家庭作为慢性病患者最直接的支持系统，在提供日常照护及情感支持方面发挥着重要作用。以家庭为中心的慢性病管理作为一种健康管理模式，在临床实践中的应用价值日益凸显。综述现有研究中以家庭为中心的慢性病管理理论及干预研究的科学证据，旨在为我国开展以家庭为中心的慢性病管理实践提供参考。
- 慢性非传染性疾病 /
- 疾病管理 /
- 以家庭为中心疾病干预
Abstract: Chronic non-communicable diseases (NCDs) have emerged as a critical global public health challenge. In China, the prevalence of NCDs continues to rise, posing significant challenges to effective disease management. Families, as the most immediate support unit for patients with chronic conditions, play a pivotal role in providing daily care and emotional support. The integration of family-centered chronic disease management in clinical practice has been well recognized in recent years. This review synthesizes the current evidence on family-based management strategies and interventions for NCDs, aiming to provide the clinical evidence for its implementation in China.
- Non-communicable diseases /
- Disease management /
- Family-based disease intervention

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图 1 以家庭为中心的多领域健康支持网络图

Figure 1. Family-centered multi-domain health support

下载: 全尺寸图片幻灯片

表 1 以家庭为中心的慢性非传染性疾病管理国内外研究基本特征

Table 1. Basic characteristics of domestic and international studies on family-centered chronic disease management

作者、年份、国家/地区 Author, year, country/region	研究设计 Study design	干预对象 Participants	干预措施 Intervention
作者、年份、国家/地区 Author, year, country/region	研究设计 Study design	干预对象 Participants	干预类型 Type	内容 Content
Karakuş等, 2024，土耳其^[26] Karakuş et al, 2024, Türkiye^[26]	RCT	94例>18岁住院治疗的恶性肿瘤患者及其家庭成员 94 hospitalized cancer patients aged >18 years and their family members	基于IFSMT的疲劳自我管理计划 IFSMT-based fatigue self-management program	2次面对面会议，30 min/次；2次出院后电话随访，15 min/次 2 face-to-face sessions (30 min each); 2 tele-monitoring sessions (15 min each)
Sezer等, 2024，土耳其^[23] Sezer et al, 2024, Türkiye^[23]	RCT	36例12~18岁癫痫患者及其父母 36 adolescents aged 12 to 18 with epilepsy and their parents	基于IFSMT的癫痫教育 IFSMT-based epilepsy education	6次在线课程+电子教育手册，20 min/次；线上咨询，完成以上指导后的第2/4周 6 modular online education programs (20 min each) + e-booklet; Online consultations at 2/4 weeks
Sezer等, 2021，土耳其^[27] Sezer et al, 2021, Türkiye^[27]	RCT	40例12~21岁慢性肾病患者及其父母40 adolescents aged 12 to 21 with chronic kidney disease	基于IFSMT的自我管理计划 IFSMT-based self-management program	3次小组培训，每15天1次，60~90 min/次；6次家访，每2周1次 3 group sessions (Once every 15 days, 60-90 min each); 6 home visits (biweekly)
Sangnimitchaikul等, 2022，泰国^[20] Sangnimitchaikul et al, 2022, Thailand^[20]	类实验研究 Quasi-experimental study	74例7~12岁哮喘儿童及其父母 74 children aged 7 to 12 years with asthma and their families	基于IFSMT的哮喘自我管理计划 IFSMT-based asthma self-management program	3次会议，60 min/次，为期2个月 3 sessions (60 min each) over a period of 2 months
Aliakbari等, 2022，伊朗^[28] Aliakbari et al, 2022, Iran^[28]	RCT	70例18~80岁装有起搏器的患者及其家庭成员(照护者) 70 patients aged 18 to 80 years with pacemaker implantation and their family members (caregivers)	基于FCEM的教育计划 FCEM-based educational program	2次会议；3次小组讨论，30 min/次；3次培训，30 min/次 2 sessions; 3 group discussions (30 min each); 3 training sessions (30 min each)
Bent等, 2021，伊朗^[29] Bent et al, 2021, Iran^[29]	类实验研究 Quasi-experimental study	100例血液透析患者及其家庭成员(主要照护者) 100 hemodialysis patients and their family members (primary caregivers)	基于FCEM的教育计划 FCEM-based educational program	2次培训课程，45 min/次；2次小组讨论，45 min/次 2 training sessions (45 min each); 2 group sessions (45 min each)
Rostaminasab等, 2023，伊朗^[22] Rostaminasab et al, 2023, Iran^[22]	RCT	100例6~14岁I型糖尿病患者及其父母 100 children aged 6 to 14 years with type Ⅰ diabetes and their parents	基于FCEM的教育计划 FCEM-based educational program	培训课程；小组讨论；教育手册+视频 Training sessions; Group discussions; Educational pamphlets and videos
Jafari等, 2020，伊朗^[30] Jafari et al, 2020, Iran^[30]	类实验研究 Quasi-experimental study	70例多发性硬化症患者及其家庭成员(与患者同住，有权决定患者的治疗和药物，负责患者的日常护理) 70 patients with multiple sclerosis and their family members (living with the patient, having the right to decide on the patient′s treatment and medicine, and being responsible for the daily care of the patient)	基于FCEM的教育计划 FCEM-based educational program	培训课程；小组讨论 Training sessions; Group discussions
Roddy等, 2022，美国^[19] Roddy et al, 2022, USA^[19]	RCT	506例年龄>18岁Ⅱ型糖尿病患者及其家人/朋友 506 patients aged >18 years with type Ⅱ diabetes and their family/friends	干预1：REACH; 干预2：REACH+FAMS Intervention 1: REACH; Intervention 2: REACH+FAMS	干预1：每日自动短信；干预2：每日自动短信+每月20~30 min电话指导+每周短信评估 Intervention 1: daily automated text messages; Intervention 2: daily automated text messages + 20 to 30 minute monthly telephone coaching sessions + weekly text messages symptom assessments
秦凯芹等, 2024，中国^[24] Qin KQ et al, 2024, China^[24]	非随机对照试验 Non-randomized controlled trial	55例7~14岁癫痫患者及其主要照护者 55 children aged 7 to 14 years with epilepsy and their primary caregivers	基于FST的正念干预 FST-based mindfulness intervention	8次面对面团体干预，每周1次，20~30 min/次；教育手册；每周发布打卡任务 8 weekly in-person group intervention sessions (20-30 min each); Educational pamphlets; Weekly task release
Wang等, 2021, 中国^[25] Wang et al, 2023, China^[25]	RCT	68例年龄>18岁血液肿瘤患者及其主要照护者 68 patients aged >18 years with hematologic malignancies and their primary caregivers	家庭参与式尊严治疗计划 Family participatory dignity therapy	2~3次访谈，45~60 min/次 2-3 interviews (45-60 min each)
陈丽华等, 2023，中国^[21] Chen LH et al, 2023, China^[21]	非随机对照试验 Non-randomized controlled trial	80例慢性心力衰竭患者及其主要照护者 80 chronic heart failure patients and their primary caregivers	以家庭为中心的群组式容量管理模式 Family-centered group capacity management model	健康教育；知识和技能指导；线上专业咨询 Health education; Knowledge and skills training; Telehealth professional consultation

作者、年份、国家/地区 Author, year, country/region	干预评估时间 Post-intervention assessment periods	结局指标 Outcomes		干预结果 Key findings
Karakuş等, 2024，土耳其^[26] Karakuş et al, 2024, Türkiye^[26]	出院后8周 At 8 weeks after discharge	疲劳评分、Katz日常生活活动评分、幸福感评分 Fatigue scores, Katz index of independence in activities of daily living, well-being scores		干预组疲劳平均评分显著降低；日常生活活动平均评分增高，但无统计学意义差异；抑郁和焦虑平均得分显著降低；精力、积极幸福感和一般幸福感平均得分显著增高 The mean scores of fatigue in the intervention group significantly decreased; Daily living activities mean scores were not significantly higher; The mean scores of depression and anxiety in the intervention group were lower, energy, positive well-being, and general well-being mean scores were found to be higher, and the difference was statistically significant
Sezer等, 2024，土耳其^[23] Sezer et al, 2024, Türkiye^[23]	最后1次干预完成时 At the completion of the lastintervention	疾病态度评分、自我效能感评分、生活质量评分、患病儿童父母从护理人员处获得的支持水平 CATIS scores, SSES-C scores, PedsQL scores, NPST scores		干预组疾病态度评分、自我效能感评分、生活质量评分、患病儿童父母从护理人员处获得的支持水平均得分显著增高 The intervention group showed significantly higher scores in child attitude toward illness, self-efficacy, QoL, and the level of support parents with sick children receive from nurses
Sezer等, 2021，土耳其^[27] Sezer et al, 2021, Türkiye^[27]	最后1次干预完成时 At the completion of the last intervention	肾小球滤过率、白蛋白、肌酐、血红蛋白、血尿素氮、生活质量评分、自我效能评分、感知社会支持评分、抑郁评分、焦虑评分 GFR, Albumin, Creatinine, Hb, BUN, scores of QoL, self-efficacy scores, perceived social support scores; depression and anxiety scores		干预组血尿素氮显著降低；生活质量评分显著提高；焦虑评分显著降低 The intervention group showed a significant decreased in BUN; The QOL score significantly improved; The anxiety score significantly decreased
Sangnimitchaikul等, 2022，泰国^[20] Sangnimitchaikul et al, 2022, Thailand^[20]	最后1次干预完成时 At the completion of the last intervention	哮喘控制状态、肺功能、生活质量评分 The level of control of asthma, the status of lung functioning, scores of QoL		干预组哮喘控制状态、肺功能和生活质量评分显著增高 The intervention group showed significantly higher scores in asthma control status, lung function and QoL
Aliakbari等, 2022，伊朗^[28] Aliakbari et al, 2022, Iran^[28]	干预完成后8周 At 8 weeks post-intervention	生活质量评分 Scores of QoL		干预组7个领域的评分和整体生活质量评分显著增高 The scores in all 7 domains and the overall scores of QoL were significantly higher in the intervention group
Bent等, 2021，伊朗^[29] Bent et al, 2021, Iran^[29]	干预完成后1个月、2个月 At 1 and 2 months post-intervention	自我护理评分 Self-care scores		干预后1个月、2个月：干预组自我护理评分显著增高 At both 1 and 2 months post-intervention: the self-care scores were significantly higher in the intervention group at both time points
Rostaminasab等, 2023，伊朗^[22] Rostaminasab et al, 2023, Iran^[22]	最后1次干预完成时、干预完成后2个月 At the completion of the last intervention and 2 months post-intervention	照护者负担评分、糖化血红蛋白 Caregiver burden scores and glycosylated hemoglobin (HbA1c)		干预后即刻、2个月：干预组照护者负担评分显著降低；干预后2个月：干预组糖化血红蛋白水平显著降低 At post-intervention and 2 months follow-up: the caregiver burden scores were significantly lower in the intervention group compared to the control group at both time points; At 2 months post-intervention: the HbA1c levels were significantly lower in the intervention group
Jafari等, 2020，伊朗^[30] Jafari et al, 2020, Iran^[30]	最后1次干预完成时、干预完成后3个月 At the completion of the last intervention and 3 months post-intervention	健康素养水平、自我效能评分 Health literacy levels and self-efficacy scores		干预后即刻、3个月：干预组健康素养水平及自我效能显著增高 At post-intervention and 3 months follow-up: the health literacy levels and self-efficacy scores were significantly higher in the intervention group at both time points
Roddy等, 2022，美国^[19] Roddy et al, 2022, USA^[19]	干预完成后6个月、12个月 At 6 months and 12 months post-intervention	糖化血红蛋白 HbA1c		2个干预组在干预后6个月糖化血红蛋白均显著降低，干预后12个月无明显差异；与干预1组相比，干预2组在干预后6个月、12个月糖化血红蛋白均显著降低 Both intervention groups showed a significant reduction in HbA1c at 6 months post-intervention, but this difference was not significant at 12 months. Compared to the REACH group (Intervention 1), the REACH+FAMS group (Intervention 2) demonstrated significantly lower HbA1c levels at both 6 months and 12 months post-intervention
秦凯芹等, 2024，中国^[24] Qin KQ et al, 2024, China^[24]	干预完成后即刻、3个月 After the final intervention session 3 months post-intervention	患儿情绪行为评分、照护者焦虑及抑郁评分 Children′s emotional/behavioral scores and caregivers′ anxiety and depression scores		干预后即刻、3个月：干预组患者情绪症状、品行问题、多动注意缺陷、同伴交往问题及困难评分均显著降低；干预组社会行为因子得分显著增高；干预组照护者焦虑、抑郁评分显著降低 At post-intervention and 3 months follow-up: children in the intervention group showed significantly lower scores for emotional symptoms, conduct problems, hyperactivity/inattention, peer relationship problems, and total difficulties; Prosocial behavior scores were significantly higher in the intervention group. The caregivers′ anxiety and depression scores were significantly lower in the intervention group
Wang等, 2021, 中国^[25] Wang et al, 2023, China^[25]	干预完成后1周、4周、8周 At 1 week, 4 weeks, and 8 weeks post-intervention	Herth希望指数、幸福感、照顾者焦虑、抑郁评分、家庭适应性和亲密度 Herth hope index, well-being scores, caregiver anxiety and depression scores, family adaptability and cohesion		干预完成后1周、4周、8周：干预组患者希望、幸福感、家庭亲密度及适应性均显著提高，干预组家庭照护者焦虑、抑郁评分显著下降 At 1 week, 4 weeks, and 8 weeks post-intervention: Patients in the intervention group showed significantly increased hope, sense of well-being, family cohesion, and adaptability Caregivers in the intervention group showed significantly reduced anxiety and depression scores
陈丽华等, 2023，中国^[21] Chen LH et al, 2023, China^[21]	干预完成后6个月 At 6 months post-intervention	长效依从性、服药依从性、生活质量、6 min步行试验距离(6 MWD)测试、左室射血分数、再入院率 Long-term compliance, medication adherence, scores of QoL, 6-minute walk distance, left ventricular ejection fraction, readmission rate		干预组患者长效依从性和服药依从性、生活质量、6 min步行距离、左室射血分数均显著增高；干预组再住院率显著降低 Patients in the intervention group demonstrated significantly higher long-term compliance, medication adherence, scores of QoL, 6-minute walk distance, and left ventricular ejection fraction; The readmission rate was significantly lower in the intervention group
注：RCT，随机对照试验；IFSMT，个人和家庭自我管理理论；Katz ADL，Katz日常生活活动独立性指数；CATIS，儿童对疾病的态度量表；SSES-C，儿童癫痫自我效能量表；PedsQL，儿童生活质量量表；NPST，护士-家长支持量表；GFR，肾小球滤过率；HbA1c，糖化血红蛋白；BUN，血尿素氮；QoL，生活质量；FCEM，家庭赋权模式；COPD，慢性阻塞性肺疾病；REACH，快速鼓励/健康教育和宣传；FAMS，以家庭为重点的激励自我保健；FST，家庭系统理论。 Note: RCT, randomized controlled trial; IFSMT, individual and family self-management theory; Katz ADL, Katz index of independence in activities of daily living; CATIS: child attitude toward illness scale; SSES-C, self-Efficacy scale for children with epilepsy; PedsQL, pediatric QoL inventory; NPST, nurse parents support tool; GFR, glomerular filtration rate; HbA1c, haemoglobin; BUN, blood urea nitrogen; QoL, quality of life; FCEM, family-centered empowerment model; COPD, chronic obstructive pulmonary disease; REACH, rapid encouragement/education and communications for health; FAMS, family-focused add-on to motivate self-care; FST, family system theory.

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