Kahraman Ayca Burcu, Yıldız Yılmaz, Dursun Ali, Sivri Serap, Coşkun Turgay, Tokatlı Ayşegül
Division of Metabolism, Department of Pediatrics, Hacettepe University Faculty of Medicine, Ankara, Türkiye.
Turk Arch Pediatr. 2025 Sep 1;60(5):491-499. doi: 10.5152/TurkArchPediatr.2025.25156.
Objective: Despite overlapping features, these 2 groups of disorders may exhibit distinct clinical and biochemical profiles. This study aimed to evaluate and compare the clinical presentation, laboratory findings, neuroimaging characteristics, genotypic spectrum, and clinical outcomes of patients with ketogenesis and ketolysis defects. Materials and Methods: Thirty patients diagnosed between 1986 and 2023 were retrospectively reviewed. Diagnosis was confirmed by clinical findings, biochemical, and genetic/enzymatic testing. Data included demographic details, clinical manifestations, neurodevelopmental status, laboratory results, imaging findings, genetic information, and treatments. Results: Of the 30 patients, 13 (43.3%) were diagnosed with 3-hydroxy-3-methylglutaryl-CoA lyase deficiency (HMGCLD), 14 (46.7%) with 2-methylacetoacetyl-coenzyme A thiolase deficiency (MATD), and 3 (10%) with succinyl-CoA:3-ketoacid CoA transferase deficiency (SCOTD). Patients with ketolysis defects presented at a later median age (210 vs. 30 days, P < .009) and exhibited more profound metabolic acidosis (pH 7.06 ± 0.18 vs. 7.26 ± 0.12, P = .028). Common presenting symptoms included vomiting in 25 (83.3%), hypoglycemia in 9 (33.3%), and seizures in 5 (16.6%). Leigh-like neuroimaging findings were observed in 3 HMGCLD patients. Biallelic pathogenic variants in HMGCL, ACAT1, or OXCT1 were identified in 14 patients. Dialysis was required in 1 MATD and 1 SCOTD case. Excluding those lost to follow-up, the mortality rates among the remaining 18 patients were 1/8, 12.5% in 2/9 HMGCLD, and 22.2% in MATD. One of the patients with SCOTD was alive at the time of the last follow-up. Conclusion: Patients with ketolysis defects are more likely to present later and with severe metabolic acidosis, occasionally requiring renal replacement therapy. Delayed diagnosis may hinder timely intervention, potentially contributing to increased mortality.
尽管这两组疾病有重叠的特征,但它们可能表现出不同的临床和生化特征。本研究旨在评估和比较生酮和酮解缺陷患者的临床表现、实验室检查结果、神经影像学特征、基因型谱和临床结局。
回顾性分析了1986年至2023年间确诊的30例患者。通过临床症状、生化检查以及基因/酶学检测确诊。数据包括人口统计学细节、临床表现、神经发育状况、实验室检查结果、影像学检查结果、基因信息和治疗情况。
30例患者中,13例(43.3%)被诊断为3-羟基-3-甲基戊二酰辅酶A裂解酶缺乏症(HMGCLD),14例(46.7%)为2-甲基乙酰乙酰辅酶A硫解酶缺乏症(MATD),3例(10%)为琥珀酰辅酶A:3-酮酸辅酶A转移酶缺乏症(SCOTD)。酮解缺陷患者的中位发病年龄较晚(210天对30天,P <.009),且表现出更严重的代谢性酸中毒(pH值7.06±0.18对7.26±0.12,P =.028)。常见的首发症状包括呕吐25例(83.3%)、低血糖9例(33.3%)和癫痫发作5例(16.6%)。3例HMGCLD患者观察到类似 Leigh 病的神经影像学表现。14例患者中鉴定出HMGCL、ACAT1或OXCT1的双等位基因致病性变异。1例MATD和1例SCOTD患者需要透析治疗。排除失访患者后,其余18例患者的死亡率分别为:HMGCLD患者中1/8(12.5%)、2/9(22.2%),MATD患者中22.2%。1例SCOTD患者在最后一次随访时存活。
酮解缺陷患者更可能发病较晚且伴有严重代谢性酸中毒,偶尔需要肾脏替代治疗。诊断延迟可能会阻碍及时干预,可能导致死亡率增加。