经济与地理制约下新生儿肝母细胞瘤的基层 诊疗困境——新疆喀什地区一例放弃治疗病例报告

Diagnostic Dilemmas of Neonatal Hepatoblastoma in Primary Care under Economic and Geographic Constraints—A Case Report of Treatment Withdrawal in Kashgar Prefecture, Xinjiang

摘要: 目的：探讨新疆边远地区新生儿肝母细胞瘤(hepatoblastoma, HB)的基层诊疗困境，分析家庭放弃治疗的多维影响因素，为改善边远地区儿童肿瘤诊疗可及性提供参考。方法：回顾性分析新疆喀什地区某县级医院收治的1例新生儿HB (高度疑似)病例的临床资料，包括产前检查、临床表现、影像学特征、诊治过程及随访情况，并结合国内外相关文献及新疆地区医疗资源配置现状进行分析。结果：患儿为足月顺产男婴，胎龄38⁺¹周，出生体重3.3 kg。孕24周县级医院B超提示胎儿右肾集合系统分离，孕37周B超发现胎儿右侧腹84 mm × 66 mm混合回声占位。出生后14小时因腹部膨隆就诊，血清甲胎蛋白(AFP)为47117 ng/mL (新生儿正常参考值 < 10.9 ng/mL)，腹部B超及CT提示肝右叶巨大占位(96 mm × 73 mm)，高度怀疑HB。因县级医院缺乏新生儿肿瘤诊疗条件，经上级医院会诊后建议转省级医院进一步手术治疗，但家属因经济困难、交通不便、文化认知及既往不良孕产史等多重因素综合作用，最终放弃治疗。出院后1周内患儿死亡。结论：新疆边远地区新生儿HB的基层诊疗面临资源配置不足、地域交通制约、家庭经济负担沉重及医患信息不对称等多重困境。县级医院应强化产前筛查后的追踪管理，优化转诊流程，依托新疆儿科疑难危重症专科联盟等平台建设远程会诊和分级转诊通道，积极探索符合边远地区实际的医疗帮扶模式，减少因非医疗因素导致的放弃治疗。

Abstract: Objective: To explore the diagnostic and therapeutic dilemmas of neonatal hepatoblastoma (HB) in primary care settings in remote areas of Xinjiang, analyze the multidimensional factors contributing to family decisions to abandon treatment, and provide references for improving the accessibility of pediatric oncology care in such regions. Methods: Clinical data of one neonatal case with a highly suspected HB admitted to a county-level hospital in Kashi, Xinjiang, were retrospectively analyzed. Data included prenatal examination findings, clinical manifestations, imaging characteristics, diagnosis and treatment processes, as well as follow-up outcomes. Analysis was also conducted in combination with relevant domestic and international literature and the current status of medical resource allocation in Xinjiang. Results: The patient was a full-term male infant delivered vaginally at 38⁺¹ weeks of gestation, with a birth weight of 3.3 kg. At 24 weeks of gestation, county hospital ultrasound showed separation of the fetal right renal collecting system. At 37 weeks of gestation, ultrasound revealed a mixed echoic mass (84 mm × 66 mm) in the right fetal abdomen. At 14 hours after birth, the infant presented with abdominal distension. Laboratory tests showed serum alpha-fetoprotein (AFP) level of 47117 ng/mL (normal reference value for neonates < 10.9 ng/mL), and abdominal ultrasound and CT revealed a large mass (96 mm × 73 mm) in the right hepatic lobe, highly suggestive of HB. Due to the lack of neonatal oncology diagnostic and treatment capabilities at the county level, consultation with a provincial hospital was conducted via telemedicine, which recommended transfer to a provincial hospital for further surgical treatment. However, the family ultimately declined treatment due to a combination of factors including financial constraints, transportation difficulties, cultural and information barriers, and a history of adverse pregnancy outcomes. The infant died within one week after discharge. Conclusion: Primary care for neonatal HB in remote areas of Xinjiang faces multiple challenges including insufficient resource allocation, geographical and transportation constraints, heavy financial burdens on families, and doctor-patient information asymmetry. County-level hospitals should strengthen the follow-up management of prenatal screening, optimize referral processes, establish telemedicine consultation and tiered referral pathways through platforms such as the Xinjiang Pediatric Difficult and Critical Illness Specialist Alliance, and actively explore healthcare support models tailored to the realities of remote areas to minimize treatment abandonment due to non-medical factors.