6533b7d0fe1ef96bd125a2cf

RESEARCH PRODUCT

Knowledge of alpha-1 deficiency and primary ciliary dyskinesia by medical students and health professionals

Olga BenaventFrancisco DasíM. Angeles RequenaSilvia CastilloAmparo EscribanoRafael Barajas

subject

Paediatric gastroenterologistTime delaysPediatricsmedicine.medical_specialtyHealth professionalsbusiness.industryeducationMedical schoolAlpha (ethology)Delayed diagnosismedicine.diseaseMedicinebusinessPulmonologistsPrimary ciliary dyskinesia

description

Background: Under-diagnosis and delayed diagnosis are common features in rare diseases, which have negative effects on the patients9 prognosis. A possible explanation could be lack of awareness and education of the health professionals involved in the managements of these patients. Alpha-1-antitrypsin deficiency (AATD) and primary ciliary dyskinesia (DCP) are under-diagnosed rare diseases showing a median diagnosis delay of five to ten years. Methods: A survey was undertaken in paediatricians (general, paediatric pulmonologists and paediatric gastroenterologist) and medical school students to assess their knowledge on AATD and PCD. Results: A total of 624 surveys on AATD and 457 on PCD were collected. Our results show that paediatric pulmonologists had greater knowledge both of AATD and PCD than do general and paediatric gastroenterologists. Knowledge of both diseases among last year medical school students was very poor. Conclusions: Our data indicate that an increase in education on AATD and PCD is needed among paediatricians and medical school students to increase the awareness and knowledge on both diseases to reduce under-diagnosis and diagnosis time delays.

https://doi.org/10.1183/13993003.congress-2016.pa3131