Isabel V Lake1, Jake A Ruddy1, James A Saba1,2, Sajya M Singh1, Macy L Early3,4, Rachel J Strodel1, Sophie Lanzkron1,5, Jennifer W Mack6, Emily R Meier7, Mindy S Christianson1,8, Lydia H Pecker1,5. 1. Johns Hopkins University School of Medicine, Baltimore, MD, USA. 2. Medical Scientist Training Program, Baltimore, MD, USA. 3. Johns Hopkins University School of Medicine, Baltimore, MD, USA. mearly4@jhmi.edu. 4. Division of Hematology, Department of Medicine, Baltimore, MD, USA. mearly4@jhmi.edu. 5. Division of Hematology, Department of Medicine, Baltimore, MD, USA. 6. Dana-Farber Cancer Institute/Boston Children's Hospital, Boston, MA, USA. 7. Indiana Hemophilia and Thrombosis Center, Indianapolis, IN, USA. 8. Division of Reproductive Endocrinology and Infertility, Department of Gynecology and Obstetrics, Baltimore, MD, USA.
Abstract
PURPOSE: People with sickle cell disease (SCD) or trait have many reproductive options, some of which decrease the chance of passing SCD to children, including in vitro fertilization with preimplantation genetic testing (IVF + PGT). Few are aware of these options, and educational materials are needed. This study aimed to develop an accessible, non-directive patient education material about reproductive options for those with SCD or trait via a process that incorporated stakeholders from the SCD community. METHODS: Multidisciplinary stakeholders guided development and revision of a novel pamphlet. Researchers applied health literacy scales to measure pamphlet understandability. We interviewed nine patients with SCD and six multidisciplinary clinicians to evaluate the pamphlet. Interviews were recorded, transcribed, and coded by a five-member team who developed a codebook and proposed themes that were revised by all research team members. Feedback was incorporated into a revised pamphlet. RESULTS: A two-page pamphlet describing reproductive options for people with SCD including IVF + PGT was acceptable to key stakeholders, including people with SCD. Material about this complex topic met health literacy standards, including being written at a 5th grade level. Patients reported feeling hopeful after reviewing the pamphlet, and participants considered the pamphlet useful, clear, and appropriate for distribution in clinics and online. CONCLUSIONS: Though awareness of reproductive options for those with SCD or trait is low, patients and providers find a novel pamphlet about this topic acceptable and useful. Educational materials about complex topics including IVF + PGT can be written at a level understandable to the average American.
PURPOSE: People with sickle cell disease (SCD) or trait have many reproductive options, some of which decrease the chance of passing SCD to children, including in vitro fertilization with preimplantation genetic testing (IVF + PGT). Few are aware of these options, and educational materials are needed. This study aimed to develop an accessible, non-directive patient education material about reproductive options for those with SCD or trait via a process that incorporated stakeholders from the SCD community. METHODS: Multidisciplinary stakeholders guided development and revision of a novel pamphlet. Researchers applied health literacy scales to measure pamphlet understandability. We interviewed nine patients with SCD and six multidisciplinary clinicians to evaluate the pamphlet. Interviews were recorded, transcribed, and coded by a five-member team who developed a codebook and proposed themes that were revised by all research team members. Feedback was incorporated into a revised pamphlet. RESULTS: A two-page pamphlet describing reproductive options for people with SCD including IVF + PGT was acceptable to key stakeholders, including people with SCD. Material about this complex topic met health literacy standards, including being written at a 5th grade level. Patients reported feeling hopeful after reviewing the pamphlet, and participants considered the pamphlet useful, clear, and appropriate for distribution in clinics and online. CONCLUSIONS: Though awareness of reproductive options for those with SCD or trait is low, patients and providers find a novel pamphlet about this topic acceptable and useful. Educational materials about complex topics including IVF + PGT can be written at a level understandable to the average American.
Authors: Christopher J Bean; W Craig Hooper; Dorothy Ellingsen; Michael R DeBaun; Jennifer Sonderman; William J Blot Journal: Public Health Genomics Date: 2014-03-28 Impact factor: 2.000
Authors: Staci Martin; Marie Claire Roderick; Cristina Abel; Pamela Wolters; Mary Anne Toledo-Tamula; Courtney Fitzhugh; Matthew Hsieh; John Tisdale Journal: Neuropsychol Rehabil Date: 2019-03-29 Impact factor: 2.868
Authors: Elizabeth L Ryan; Reon Baird; Monica Rivera Mindt; Desiree Byrd; Jennifer Monzones; Susan Morgello Bank Journal: J Int Neuropsychol Soc Date: 2005-11 Impact factor: 2.892
Authors: Robert Sheppard Nickel; Jacqueline Y Maher; Michael H Hsieh; Meghan F Davis; Matthew M Hsieh; Lydia H Pecker Journal: J Clin Med Date: 2022-04-21 Impact factor: 4.964