caa a22 4500 605544956 CHVBK 20210128100933.0 cr unu---uuuuu 210128e20150401xx s 000 0 eng 10.1007/s10897-014-9758-8 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9758-8 Evaluation of Patient Education Materials: The Example of Circulating cell free DNA Testing for Aneuploidy [Elektronische Daten] [Edward Kloza, Paula Haddow, Jacquelyn Halliday, Barbara O'Brien, Geralyn Lambert-Messerlian, Glenn Palomaki] Informed consent is the process by which the treating health care provider discloses appropriate information to a competent patient so that the patient may make a voluntary choice to accept or refuse treatment. When the analysis of circulating cell free DNA (ccfDNA) became commercially available in 2011 through the Prenatal Diagnostic Laboratory at Women & Infants Hospital of Providence, Rhode Island to "high-risk” women, it provided an opportunity to examine how commercial laboratories informed potential consumers. We identified, via an internet search, four laboratories offering such testing in the United States and one in Europe. We evaluated patient educational materials (PEMs) from each using the Flesch Reading Ease method and a modified version of the Suitability Assessment of Materials (SAM) criteria. Pamphlets were also reviewed for their inclusion of content recommendations from the International Society for Prenatal Diagnosis, the National Society of Genetic Counselors, the American College of Obstetricians and Gynecologists jointly with the Society of Maternal Fetal Medicine, and the American College of Genetics and Genomics. Reading levels were typically high (10th-12th grade). None of the pamphlets met all SAM criteria evaluated nor did any pamphlet include all recommended content items. To comply with readability and content recommendations more closely, Women & Infants Hospital created a new pamphlet to which it applied the same criteria, and also subjected it to focus group assessment. These types of analyses can serve as a model for future evaluations of similar patient educational materials. National Society of Genetic Counselors, Inc., 2014 Patient education materials nationallicence Focus groups nationallicence High risk nationallicence Kloza Edward Division of Medical Screening and Special Testing, Department of Pathology, Women & Infants Hospital and the Alpert Medical School of Brown University, 70 Elm St. 2nd Floor, 02903, Providence, RI, USA aut Haddow Paula Institute for Preventive Medicine and Medical Screening, Windham, ME, USA aut Halliday Jacquelyn Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Women & Infants Hospital, Providence, RI, USA aut O'Brien Barbara Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Women & Infants Hospital, Providence, RI, USA aut Lambert-Messerlian Geralyn Division of Medical Screening and Special Testing, Department of Pathology, Women & Infants Hospital and the Alpert Medical School of Brown University, 70 Elm St. 2nd Floor, 02903, Providence, RI, USA aut Palomaki Glenn Division of Medical Screening and Special Testing, Department of Pathology, Women & Infants Hospital and the Alpert Medical School of Brown University, 70 Elm St. 2nd Floor, 02903, Providence, RI, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/2(2015-04-01), 259-266 1059-7700 24:2<259 2015 24 10897 https://doi.org/10.1007/s10897-014-9758-8 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9758-8 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Kloza Edward Division of Medical Screening and Special Testing, Department of Pathology, Women & Infants Hospital and the Alpert Medical School of Brown University, 70 Elm St. 2nd Floor, 02903, Providence, RI, USA aut NATIONALLICENCE 700 1- Haddow Paula Institute for Preventive Medicine and Medical Screening, Windham, ME, USA aut NATIONALLICENCE 700 1- Halliday Jacquelyn Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Women & Infants Hospital, Providence, RI, USA aut NATIONALLICENCE 700 1- O'Brien Barbara Division of Maternal-Fetal Medicine, Department of Obstetrics and Gynecology, Women & Infants Hospital, Providence, RI, USA aut NATIONALLICENCE 700 1- Lambert-Messerlian Geralyn Division of Medical Screening and Special Testing, Department of Pathology, Women & Infants Hospital and the Alpert Medical School of Brown University, 70 Elm St. 2nd Floor, 02903, Providence, RI, USA aut NATIONALLICENCE 700 1- Palomaki Glenn Division of Medical Screening and Special Testing, Department of Pathology, Women & Infants Hospital and the Alpert Medical School of Brown University, 70 Elm St. 2nd Floor, 02903, Providence, RI, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/2(2015-04-01), 259-266 1059-7700 24:2<259 2015 24 10897