关键词: 静脉畸形；患者旅程地图；儿童；疾病管理

Abstract: Objective: To analyze behaviors, challenges, and multidimensional needs in the disease management of children with limb venous malformations using patient journey mapping, providing evidence for optimizing pediatric chronic disease management. Methods: Using purposive sampling, semi-structured interviews were conducted from July to October 2025 with 13 children with limb venous malformations and their caregivers at a tertiary grade A children's hospital. Data were analyzed using content analysis to develop a patient journey map. Results: Organized along the timeline of screening/diagnosis, perioperative period, treatment intervals and observation periods, the analysis integrated findings across behavioral, challenge, and need dimensions. This yielded 19 themes, including caregivers' emotional fluctuations and trial-and-error healthcare-seeking behaviors; challenges such as early symptom neglect and inadequate pain management for children; and needs like disease awareness support and specialized outpatient services. Conclusion: Multidimensional gaps exist in disease management for children with limb venous malformations. Future interventions should include: establishing multidisciplinary collaborative teams to strengthen clinical regimens and technical support; developing phased disease disclosure pathways; improving a dual-dimensional psychological support system; and building a digital follow-up platform to deliver precise and continuous full-cycle care services.

Key words: venous malformations; patient journey map; children; disease management