Assistance Publique-Hôpitaux de Paris, Robert Debré University Hospital, Department of Pediatric Endocrinology and Diabetology, Reference Center for Growth and Development Endocrine Diseases, Paris, France,
Assistance Publique-Hôpitaux de Paris, Hôpital Universitaire Robert Debré, Unit of Clinical Epidemiology, Paris, France.
Horm Res Paediatr. 2019;92(4):254-261. doi: 10.1159/000505517. Epub 2020 Feb 5.
Most children with endocrine diseases require long-term continuity of care. We investigated the prevalence of loss to follow-up (LTFU) in pediatric patients with chronic endocrine diseases and the risk factors associated with LTFU.
This observational cohort study included all children with chronic endocrine diseases included in the database of a single academic pediatric care center over a period of 8 years. LTFU was defined as a lack of attendance at clinical visits for over 2 years, for unknown reasons.
LTFU was recorded for 154 of the 1,067 patients included (14%). Median age at diagnosis was 5.8 (0.3-11.8) vs. 1.2 (0.0-6.9) years, and age at last visit was 14.1 (9.7-16.1) vs. 11.7 (6.1-15.8) years, for the LTFU and no-LTFU groups, respectively. In multivariate analysis, the risk of LTFU increased with age at diagnosis (OR 1.18; 95% CI 1.12-1.24) and was higher for patients diagnosed before 2006 (vs. after 2006; OR 4.80; 95% CI 3.00-7.66), with fewer visits in the last 3 years (OR 0.72; 95% CI 0.65-0.80; p < 0.0001) and a lower health insurance classification (OR 1.79; 95% CI 1.10-2.89; p = 0.02). The risk of LTFU was higher for patients with isolated growth hormone deficiency than for those with other endocrine conditions, such as multiple pituitary deficiencies, hypogonadotropic hypogonadism, Turner syndrome, or thyroid, adrenal, or gonadal disorders (OR 5.24; 95% CI 1.13-24.37; p = 0.03).
This study provides the first epidemiological data for LTFU in children and adolescents with chronic endocrine diseases. It should facilitate the targeting of interventions to improve adherence to medical care and healthcare organization during the pediatric period.
大多数患有内分泌疾病的儿童需要长期的连续性护理。我们调查了儿童慢性内分泌疾病患者失访（LTFU）的发生率，以及与 LTFU 相关的危险因素。
本观察性队列研究纳入了在单家学术儿科医疗中心数据库中登记的 8 年内所有患有慢性内分泌疾病的儿童。LTFU 定义为因不明原因未参加临床就诊超过 2 年。
1067 例患儿中记录到 154 例（14%）失访。LTFU 组和未失访组的中位诊断年龄分别为 5.8（0.3-11.8）岁和 1.2（0.0-6.9）岁，末次就诊年龄分别为 14.1（9.7-16.1）岁和 11.7（6.1-15.8）岁。多变量分析显示，LTFU 风险随诊断年龄的增加而增加（OR 1.18；95%CI 1.12-1.24），且诊断于 2006 年前（vs. 2006 年后；OR 4.80；95%CI 3.00-7.66）、末次就诊前 3 年内就诊次数较少（OR 0.72；95%CI 0.65-0.80；p<0.0001）和健康保险级别较低（OR 1.79；95%CI 1.10-2.89；p=0.02）的患儿风险更高。孤立性生长激素缺乏症患儿的 LTFU 风险高于其他内分泌疾病患儿，如多发性垂体缺乏症、促性腺激素性性腺功能减退症、特纳综合征或甲状腺、肾上腺或性腺疾病（OR 5.24；95%CI 1.13-24.37；p=0.03）。
本研究首次提供了儿童和青少年慢性内分泌疾病患者 LTFU 的流行病学数据。这将有助于针对儿科期间改善医疗护理依从性和医疗保健组织的干预措施进行靶向。
