ESPE Abstracts (2019) 92 RFC3.2

Factors Affecting Loss to Follow-Up for Patients with Chronic Endocrine Conditions During the Pediatric Period: A Cohort Study at a Reference Center for Rare Diseases

Laura Atger-Lallier1,2, Sophie Guilmin-Crepon1,3, Priscilla Boizeau1,3, Delphine Zenaty1,2, Dominique Simon1,2, Anne Paulsen1,2, Laetitia Martinerie1,2, Caroline Storey1,2, Jean-Claude Carel1,2, Juliane Leger1,2


1Robert Debré University Hospital, Paris, France. 2Endocrinology-Diabetology Department, Reference Center for endocrine growth and developmental diseases, Paris University, Paris, France. 3Clinical Epidemiology Unit, Paris, France


Introduction: Most patients with endocrine diseases diagnosed during childhood require long-term continuity of care. A lack of regular medical follow-up visits may be associated with impaired long-term health outcomes, with greater risks of morbidity and mortality. The importance and challenges of the transition from pediatric to adult healthcare are well recognized, but few studies have considered loss to follow-up during pediatric care. We investigated the prevalence of patients with chronic endocrine disease lost to follow-up (LTFU) during the pediatric period, to identify risk factors associated with LTFU.

Patients and Methods: This observational cohort study included all patients under the age of 16 years with chronic endocrine diseases included in the database of a single academic pediatric care center between January 2007 and June 2014, with a study end point in December 2016. Patients who had not attended clinical visits for over two years, for unknown reasons, were considered LTFU. Of the 1463 patients, 396 stopped attending the clinic for known reasons. All patients resident in France were covered by the national health insurance system, including those classified as having a low income (18% of our cohort).

Results: Of the 1067 remaining patients, 154 (14%) were LTFU. Median (25-75th percentile) age at diagnosis was 5.8 (0.3-11.8) vs. 1.2 (0.0-6.8) years, age at the last visit was 14.1 (9.7-16.2) vs. 11.7 (6.1-15.8) years, median follow-up was 4.3 (1.9-9.1) vs. 6.1 (3.5-10.1) years at the end of the study period and the number of visits during the last three years was 4.0 (3.0-6.0) vs. 6.0 (4.0-7.0) for patients LTFU and patients not LTFU, respectively.

In multivariate analysis, the risk of being LTFU increased with age at diagnosis (OR 1.18; 95%CI: 1.12-1.24), diagnosis before 2006 (vs. after 2006) (OR 4.80; 3.00-7.66), smaller numbers of visits in the last three years (OR 0.72; 0.65-0.80); (p<0.0001), and lower health insurance classification (OR 1.79; 1.10-2.89; p=0.02). Patients with isolated GH deficiency were at higher risk of being LTFU than those with other endocrine conditions, such as thyroid, gonadal, adrenal, or multiple pituitary deficiencies, or Turner's syndrome (OR 5.24; 1.13-24.37; p=0.03).

In Conclusion: This study is the first to provide epidemiological data on children and adolescents with pediatric endocrine chronic diseases LTFU. It should help to target interventions for improving adherence to medical care and improvements in healthcare organization during the pediatric period.