Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling

Autor: Jori F. Bogetz, Vasu Munjapara, Carrie M. Henderson, Jessica C. Raisanen, Nicholas A. Jabre, Kelly J. Shipman, Benjamin S. Wilfond, Renee D. Boss

Publikováno v: Developmental Medicine & Child Neurology. 64:840-846

To retrospectively explore the perspectives of parents of children with severe neurological impairment (SNI), such as those with severe cerebral palsy, epilepsy syndromes, and structural brain differences, on clinician counseling regarding home mecha

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e091cd922577efef7e4431129efea002
https://doi.org/10.1111/dmcn.15151

Parents Are the Experts: A Qualitative Study of the Experiences of Parents of Children With Severe Neurological Impairment During Decision-Making

Autor: Abby R. Rosenberg, Amy Trowbridge, Jori F. Bogetz, Danielle Jonas, Hannah Lewis, Kelly J. Shipman, Julie Hauer

Publikováno v: J Pain Symptom Manage

CONTEXT: Parents of children with severe neurologic impairment (SNI) often face high-stakes medical decisions when their child is hospitalized. These decisions involve technology/surgery, goals of care/advance care planning, or transitions of care. O

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::cff3828bdb6e796cfcc808d809acf143
https://doi.org/10.1016/j.jpainsymman.2021.06.011

Engaging Patient Advisory Committees to Inform a Genomic Cancer Risk Study: Lessons for Future Efforts

Autor: Nangel M Lindberg, Kathleen F Mittendorf, Devan M Duenas, Katherine Anderson, Alyssa Koomas, Stephanie A Kraft, Sonia Okuyama, Kelly J Shipman, Meredith L Vandermeer, Katrina AB Goddard, Benjamin S Wilfond, Carmit McMullen

Publikováno v: Perm J

INTRODUCTION: The Cancer Health Assessments Reaching Many study seeks to reduce disparities in genomic care. Two patient advisory committees (PACs) were formed, 1 of English speakers and 1 of Spanish speakers, to vet study processes and materials. St

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6fcc8e534dc14c54b6770ed47cc6b092
https://europepmc.org/articles/PMC9662241/

Perceived Utility of Genomic Sequencing: Qualitative Analysis and Synthesis of a Conceptual Model to Inform Patient-Centered Instrument Development

Autor: Hadley Stevens Smith, Stephanie R. Morain, Jill Oliver Robinson, Isabel Canfield, Janet Malek, Caryn Kseniya Rubanovich, Cinnamon S. Bloss, Sara L. Ackerman, Barbara Biesecker, Kyle B. Brothers, Crispin N. Goytia, Carol R. Horowitz, Sara J. Knight, Barbara Koenig, Stephanie A. Kraft, Simon Outram, Christine Rini, Kelly J. Shipman, Margaret Waltz, Benjamin Wilfond, Amy L. McGuire

Publikováno v: The patient, vol 15, iss 3
Patient

BACKGROUND AND OBJECTIVES: Successful clinical integration of genomic sequencing (GS) requires evidence of its utility. While GS potentially has benefits (utilities) or harms (disutilities) across multiple domains of life for both patients and their

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::325dd09837edcbb6b73f3ebff3fddaeb
https://escholarship.org/uc/item/2zw0x7fb

Laboratory-related outcomes from integrating an accessible delivery model for hereditary cancer risk assessment and genetic testing in populations with barriers to access

Autor: Laura M. Amendola, Elizabeth Shuster, Michael C. Leo, Michael O. Dorschner, Bradley A. Rolf, Brian H. Shirts, Marian J. Gilmore, Sonia Okuyama, Jamilyn M. Zepp, Tia L. Kauffman, Kathleen F. Mittendorf, Cecilia Bellcross, Charisma L. Jenkins, Galen Joseph, Leslie Riddle, Sapna Syngal, Chinedu Ukaegbu, Katrina A.B. Goddard, Benjamin S. Wilfond, Gail P. Jarvik, Jake Allen, Katherine P. Anderson, Frank Angelo, Briana L. Arnold, Cecelia Bellcross, Tiffany Bendelow, Barbara B. Biesecker, Kristin D. Breslin, Joanna E. Bulkley, Kristina F. Booker, Mikaella Caruncho, James V. Davis, Sonia Deutsch, Beth Devine, Devan M. Duenas, Donna J. Eubanks, Heather Spencer Feigelson, Amanda S. Freed, Clay Greaney, Inga Gruß, Claudia Guerra, Boya Guo, Joan Holup, Jessica Ezzell Hunter, Chalinya L. Ingphakorn, Paige Jackson, Leah S. Karliner, Erin Keast, Sarah Knerr, Alyssa H. Koomas, Stephanie A. Kraft, Mi H. Lee, Robin Lee, Sandra Soo-Jin Lee, Hannah S. Lewis, Elizabeth G. Liles, Nangel M. Lindberg, Frances Lynch, Carmit K. McMullen, Elizabeth Medina, Kristin R. Muessig, C. Samuel Peterson, Angela R. Paolucci, Rosse Rodriguez Perez, Kathryn M. Porter, Chelese L. Ransom, Ana Reyes, Leslie S. Riddle, Sperry Robinson, Alan F. Rope, Emily Schield, Jennifer L. Schneider, Kelly J. Shipman, Britta N. Torgrimson-Ojerio, Meredith L. Vandermeer, Alexandra M. Varga, David L. Veenstra, W. Chris Whitebirch, Larissa Lee White

Publikováno v: Genetics in medicine : official journal of the American College of Medical Genetics. 24(6)

This study aimed to evaluate the laboratory-related outcomes of participants who were offered genomic testing based on cancer family history risk assessment tools.Patients from clinics that serve populations with access barriers, who are screened at

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b4e0d7fb94390fcffb33cd64130469a2
https://pubmed.ncbi.nlm.nih.gov/35305866