The epidemiology of transition into adulthood of rare diseases patients: results from a population-based registry
| العنوان: | The epidemiology of transition into adulthood of rare diseases patients: results from a population-based registry |
|---|---|
| المؤلفون: | Laura Visonà Dalla Pozza, Cinzia Minichiello, Andrea Vianello, Paola Facchin, Monica Mazzucato, Ema Toto, Sara Barbieri, Silvia Manea |
| المصدر: | International Journal of Environmental Research and Public Health, Vol 15, Iss 10, p 2212 (2018) International Journal of Environmental Research and Public Health Volume 15 Issue 10 |
| سنة النشر: | 2018 |
| مصطلحات موضوعية: | Adult, Male, Transition to Adult Care, medicine.medical_specialty, Pediatrics, Adolescent, Health, Toxicology and Mutagenesis, Population, Psychological intervention, lcsh:Medicine, registry, Adult age, Article, Young Adult, 03 medical and health sciences, 0302 clinical medicine, Pregnancy, 030225 pediatrics, Epidemiology, Humans, Medicine, Registries, 030212 general & internal medicine, Young adult, Child, education, Aged, Aged, 80 and over, education.field_of_study, Adult patients, business.industry, lcsh:R, Infant, Newborn, Public Health, Environmental and Occupational Health, Infant, rare diseases, transition, Middle Aged, Italy, Child, Preschool, Eye disorder, Female, epidemiology, business, Population-Based Registry |
| الوصف: | Background: Despite the fact that a considerable number of patients diagnosed with childhood-onset rare diseases (RD) survive into adulthood, limited information is available on the epidemiology of this phenomenon, which has a considerable impact both on patients&rsquo care and on the health services. This study describes the epidemiology of transition in a population of RD patients, using data from the Veneto Region Rare Diseases Registry (VRRDR), a web-based registry monitoring since 2002 a consistent number of RD in a defined area (4.9 million inhabitants). Methods: Longitudinal cohorts of patients born in the years 1988 to 1998 and enrolled in the VRRDR in their paediatric age were identified. Data referred to this group of patients, experiencing transition from paediatric to adult age during the years 2006&ndash 2016, are presented. Results: 2153 RD patients (44.1% females and 55.9% males) passed from childhood to adulthood in the study period, corresponding to a 3-fold increase from 2006 to 2016. The majority of these patients was affected by congenital anomalies (32.0%), by hematologic diseases (15.9%), eye disorders (12.1%) and neoplasms (7.9%). RD patients who experienced transition from paediatric age to adulthood represent the 9.2% of adult patients enrolled in the Registry at 31 December 2016. Conclusions: We described a subset of RD young adults experiencing transition into adulthood. The data reported can be considered as minimum values for estimating the size of this increasing population presenting specific transition needs. These figures are valuable for clinicians, patients and health planners. Public policy interventions are needed in order to promote dedicated care transition pathways in the broader framework of health policies devoted to RD. |
| وصف الملف: | application/pdf |
| اللغة: | English |
| URL الوصول: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::107745e55ee33a5e21dfe87defa3f464 http://hdl.handle.net/11577/3282659 |
| حقوق: | OPEN |
| رقم الأكسشن: | edsair.doi.dedup.....107745e55ee33a5e21dfe87defa3f464 |
| قاعدة البيانات: | OpenAIRE |
| الوصف غير متاح. |