Caroline Culen: Lost in Transition – Young people in transition from pediatrics to adult medicine

Datum
20. Feb­ru­ar 2025 

Online lec­ture

Car­o­line Culen (Aus­tri­an League for Child and Ado­les­cent Health): “Lost in Tran­si­tion – Young peo­ple in tran­si­tion from pedi­atrics to adult medicine”
Feb­ru­ary 20, 2025, at 3:00pm CET.

Please join us on zoom: https://zoom.us/j/94278973444?pwd=O2w0jD3XeWZUfFwuiwXFCaTWm9ahJg.1
Meet­ing ID: 942 7897 3444; Access code: 437424

Abstract: The lec­ture deals with the health care tran­si­tion (HTC) of young peo­ple with chron­ic and rare dis­eases from pedi­atric to adult med­i­cine. Where­as a few decades ago only a few affect­ed chil­dren reached adult­hood, today around 90% sur­vive thanks to med­ical advances. Nev­er­the­less, this tran­si­tion car­ries con­sid­er­able risks: Ado­les­cents miss fol­low-up appoint­ments, their adher­ence to treat­ment decreas­es and some fall out of care (“lost in tran­si­tion”), which can lead to dete­ri­o­rat­ing health. Chal­lenges dur­ing the HTC include the loss of trust­ed doc­tors, struc­tur­al dif­fer­ences between pedi­atric and adult med­i­cine and a lack of inde­pen­dence and self-care on the part of young peo­ple. A suc­cess­ful HTC, on the oth­er hand, reduces com­pli­ca­tions and improves med­ical out­comes and qual­i­ty of life. The pre­sen­ta­tion will pro­vide an overview of devel­op­ments and efforts to improve tran­si­tion in Aus­tria along with best prac­tice exam­ples and HTC guidelines.

Dr. Car­o­line Culen stud­ied psy­chol­o­gy at the Uni­ver­si­ty of Vien­na and com­plet­ed her doc­tor­ate in pub­lic health at the Med­ical Uni­ver­si­ty of Vien­na. She worked for die möwe child pro­tec­tion cen­ters and at the children’s clin­ic of the Vien­na Gen­er­al Hos­pi­tal (AKH Vien­na) with chron­i­cal­ly ill chil­dren and ado­les­cents. Since 2019 she has head­ed the NGO Aus­tri­an League for Child and Ado­les­cent Health. She pub­lish­es on the sub­ject of young peo­ple with rare dis­eases, writes book con­tri­bu­tions and spe­cial­ist arti­cles. She is com­mit­ted to help­ing young peo­ple grow up in the best pos­si­ble way through her lec­tur­ing activ­i­ties, com­mit­tee and umbrel­la orga­ni­za­tion work. She is the moth­er of 4 children.

This guest lec­ture is orga­nized by the Rare Dis­ease Social Research Cen­ter as a part of the Pol­ish Acad­e­my of Sci­ences and the Aus­tri­an Acad­e­my of Sci­ences joint project “Tran­si­tion in Rare Diseases.”