title: Transferring young people with profound intellectual and multiple disabilities from pediatric to adult medical care: parents' experiences and recommendations.
abstract: Many children with profound intellectual and multiple disabilities (PIMD) now reach adulthood. The aim of this study was to elicit parents' experiences with the transfer from pediatric to adult medical care. A convenience sample of 131 Dutch parents of young people with PIMD (16-26 years) completed a web-based questionnaire. Twenty-two percent of the young persons were still in pediatric care; 22% of the others had no care coordinator, although their health needs were the same. Parents valued the care provided by the pediatrician, and wished to see it continued. They were critical about how they had been prepared for transfer to adult care. Parents provided suggestions to improve transitional care, such as early start, information provision, and a joint consultation between pediatric and adult care.
authors.affiliation: Department of Pediatrics, Erasmus MC University Medical Center, Sophia Children’s Hospital, Dr Molewaterplein 60, 3015 GJ Rotterdam, The Netherlands. g.c.b.deheus@erasmusmc.nl
authors.forename: Karen G C B
authors.initials: KG
authors.lastname: Bindels-de Heus
authors.forename: Anneloes
authors.initials: A
authors.lastname: van Staa
authors.forename: Ingeborg
authors.initials: I
authors.lastname: van Vliet
authors.forename: Frans V P M
authors.initials: FV
authors.lastname: Ewals
authors.forename: Sander R
authors.initials: SR
authors.lastname: Hilberink
mesh_terms: D000293:Adolescent; D000328:Adult; D002547:Cerebral Palsy / Q000628:therapy*; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D008607:Intellectual Disability / Q000628:therapy*; D008297:Male; D010290:Parents; D011795:Surveys and Questionnaires; D060305:Transition to Adult Care