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已发表论文
血友病患者从儿科到成人服务过渡护理的研究进展：聚焦疾病严重程度和照护连续性
Authors Wu S , Wang C, Li D, Shi D
Received 4 August 2025
Accepted for publication 14 January 2026
Published 10 February 2026 Volume 2026:17 558200
DOI https://doi.org/10.2147/JBM.S558200
Checked for plagiarism Yes
Review by Single anonymous peer review
Peer reviewer comments 2
Editor who approved publication: Professor Chang Kim
Siting Wu,1 Chunli Wang,2 Dan Li,3 Dongrong Shi4
1Department of Stem Cell Transplantation, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, People’s Republic of China; 2Department of Nursing, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, People’s Republic of China; 3Department of Medical Oncology, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, People’s Republic of China; 4Department of Leukemia, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, People’s Republic of China
Correspondence: Chunli Wang, Email chunliwang2008@163.com
Abstract: Hemophilia is a lifelong coagulation disorder with varying severity levels, which significantly impacts management strategies. The transition period from pediatric to adult medical system represents a critical stage for ensuring continuous and tailored care. This narrative review synthesizes current evidence on transitional care for hemophilia patients, focusing on nursing-led interventions. A structured search of literature from 2010 to 2024 was conducted, drawing from key databases including PubMed, Embase, and CINAHL, as well as major guideline repositories and professional society publications. The findings from this analysis systematically summarize the challenges and intervention strategies in the transitional period. At the patient level, there are problems such as lack of self-management ability, psychosocial adaptation disorder and treatment compliance decline, particularly among those with severe disease; this period also requires a deliberate shift in responsibility from parents to the young person, a process that requires careful support for both. At the level of medical system, the transition difficulty is exacerbated by the differences between pediatric and adult medical models, the lack of multidisciplinary cooperation and the uneven distribution of resources, all of which hinder seamless care continuity. At present, the effective intervention strategies include: the implementation of structured transition plan, the training of self injection and emergency treatment skills, the provision of psychosocial support, and the establishment of nurse led multidisciplinary cooperation mode. During the transition period, nurses play the core role of assessment planning, education empowerment, coordination advocacy and psychological support. In the future, it is necessary to strengthen the development of digital tools, research on long-term health outcomes and policy support, so as to optimize the transitional nursing system and ensure the continuity of life-long health management of patients across all severity levels. While this review synthesizes global evidence, it is pertinent to note that challenges of resource access, particularly the urban-rural divide in availability of factor concentrates, novel therapies, and home-treatment programs, are often more pronounced in many developing countries, including China. The insights gathered underscore the need for standardized, nurse-coordinated transitional care protocols to inform both clinical practice and healthcare policy, aiming to bridge current gaps in service delivery and improve long-term patient outcomes.
Keywords: hemophilia, children, transition period, ready
1Department of Stem Cell Transplantation, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, People’s Republic of China; 2Department of Nursing, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, People’s Republic of China; 3Department of Medical Oncology, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, People’s Republic of China; 4Department of Leukemia, Beijing Children’s Hospital, Capital Medical University, National Center for Children’s Health, Beijing, People’s Republic of China
Correspondence: Chunli Wang, Email chunliwang2008@163.com
Abstract: Hemophilia is a lifelong coagulation disorder with varying severity levels, which significantly impacts management strategies. The transition period from pediatric to adult medical system represents a critical stage for ensuring continuous and tailored care. This narrative review synthesizes current evidence on transitional care for hemophilia patients, focusing on nursing-led interventions. A structured search of literature from 2010 to 2024 was conducted, drawing from key databases including PubMed, Embase, and CINAHL, as well as major guideline repositories and professional society publications. The findings from this analysis systematically summarize the challenges and intervention strategies in the transitional period. At the patient level, there are problems such as lack of self-management ability, psychosocial adaptation disorder and treatment compliance decline, particularly among those with severe disease; this period also requires a deliberate shift in responsibility from parents to the young person, a process that requires careful support for both. At the level of medical system, the transition difficulty is exacerbated by the differences between pediatric and adult medical models, the lack of multidisciplinary cooperation and the uneven distribution of resources, all of which hinder seamless care continuity. At present, the effective intervention strategies include: the implementation of structured transition plan, the training of self injection and emergency treatment skills, the provision of psychosocial support, and the establishment of nurse led multidisciplinary cooperation mode. During the transition period, nurses play the core role of assessment planning, education empowerment, coordination advocacy and psychological support. In the future, it is necessary to strengthen the development of digital tools, research on long-term health outcomes and policy support, so as to optimize the transitional nursing system and ensure the continuity of life-long health management of patients across all severity levels. While this review synthesizes global evidence, it is pertinent to note that challenges of resource access, particularly the urban-rural divide in availability of factor concentrates, novel therapies, and home-treatment programs, are often more pronounced in many developing countries, including China. The insights gathered underscore the need for standardized, nurse-coordinated transitional care protocols to inform both clinical practice and healthcare policy, aiming to bridge current gaps in service delivery and improve long-term patient outcomes.
Keywords: hemophilia, children, transition period, ready