title: Benefits and limitations of a multidisciplinary approach to individualized management of Cornelia de Lange syndrome and related diagnoses.
abstract: Given the clinical complexities of Cornelia de Lange Syndrome (CdLS), the Center for CdLS and Related Diagnoses at The Children's Hospital of Philadelphia (CHOP) and The Multidisciplinary Clinic for Adolescents and Adults at Greater Baltimore Medical Center (GBMC) were established to develop a comprehensive approach to clinical management and research issues relevant to CdLS. Little work has been done to evaluate the general utility of a multispecialty approach to patient care. Previous research demonstrates several advantages and disadvantages of multispecialty care. This research aims to better understand the benefits and limitations of a multidisciplinary clinic setting for individuals with CdLS and related diagnoses. Parents of children with CdLS and related diagnoses who have visited a multidisciplinary clinic (N = 52) and who have not visited a multidisciplinary clinic (N = 69) were surveyed to investigate their attitudes. About 90.0% of multispecialty clinic attendees indicated a preference for multidisciplinary care. However, some respondents cited a need for additional clinic services including more opportunity to meet with other specialists (N = 20), such as behavioral health, and increased information about research studies (N = 15). Travel distance and expenses often prevented families' multidisciplinary clinic attendance (N = 41 and N = 35, respectively). Despite identified limitations, these findings contribute to the evidence demonstrating the utility of a multispecialty approach to patient care. This approach ultimately has the potential to not just improve healthcare for individuals with CdLS but for those with medically complex diagnoses in general. © 2016 Wiley Periodicals, Inc.
authors.forename: Kathleen
authors.initials: K
authors.lastname: January
authors.forename: Laura J
authors.initials: LJ
authors.lastname: Conway
authors.forename: Matthew
authors.initials: M
authors.lastname: Deardorff
authors.forename: Ann
authors.initials: A
authors.lastname: Harrington
authors.forename: Ian D
authors.initials: ID
authors.lastname: Krantz
authors.forename: Kathleen
authors.initials: K
authors.lastname: Loomes
authors.forename: Mary
authors.initials: M
authors.lastname: Pipan
authors.forename: Sarah E
authors.initials: SE
authors.lastname: Noon
mesh_terms: D003635:De Lange Syndrome / Q000628:therapy*; D006801:Humans; D033183:Interdisciplinary Communication; D008511:Medicine / Q000458:organization & administration*; D010290:Parents; D057285:Precision Medicine; D011795:Surveys and Questionnaires
keywords: Cornelia de Lange syndrome; multidisciplinary; multispecialty