Research Progress on Transitional Care for Hemophilia Patients from Pediatric to Adult Services: Focusing on Disease Severity and Care Continuity

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.

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Publication Details

Journal
Journal of Blood Medicine
Published
2026-02-01
DOI
https://doi.org/10.2147/jbm.s558200
Primary Topic
Hemophilia Treatment and Research
Type
article
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article

Research Progress on Transitional Care for Hemophilia Patients from Pediatric to Adult Services: Focusing on Disease Severity and Care Continuity

Dongrong Shi, Chunli Wang, Dan Li, Siting Wu
Journal of Blood Medicine
Hemophilia Treatment and Research
article

Research Progress on Transitional Care for Hemophilia Patients from Pediatric to Adult Services: Focusing on Disease Severity and Care Continuity

Dongrong Shi, Chunli Wang, Dan Li, Siting Wu
article en

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.

Journal of Blood MedicineVol. Volume 17
Capital Medical University (CN), Beijing Children’s Hospital (CN)
Partnerships for the goals
Openalex Percentile: Top 60%
Hemophilia Treatment and Research
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