Misunderstandings, misperceptions, and missed opportunities: Perspectives on adherence barriers from people with CF, caregivers, and CF team members

Autor: Cyd K. Eaton, Sara Beachy, Kristin A. Riekert, Katherine A. McLean, Ruth Bernstein, Christina J. Nicolais, Alexandra L. Quittner, Estefany Sáez-Clarke

Publikováno v: Patient Education and Counseling. 103:1587-1594

Objective To identify differences in perspectives of people with cystic fibrosis (PwCF) and caregivers versus healthcare providers on adherence barriers. Mismatched perspectives may lead to miscommunication and missed opportunities to reduce barriers

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::7de8ed2f6820b3a5cbb3ac99d3c4b97e
https://doi.org/10.1016/j.pec.2020.02.025

Parent knowledge of disease management in cystic fibrosis: Assessing behavioral treatment management

Autor: Alexandra L. Quittner, Christina J. Nicolais, Ruth Bernstein, Kristin A. Riekert

Publikováno v: Pediatric Pulmonology. 53:162-173

Background Cystic fibrosis (CF) is a life-shortening, burdensome disease requiring complex knowledge to manage the disease. Significant gaps in knowledge have been documented for parents, which may lead to unintentionally poor adherence and insuffici

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::b50857303d70919d614c285315dd6db2
https://doi.org/10.1002/ppul.23916

Contributors

Autor: Robin Abel, Steven H. Abman, Eric Alton, Daniel R. Ambruso, William Carl Anderson, Karthik Balakrishnan, Ian Michael Balfour-Lynn, Anna Bamford, Ronen Bar-Yoseph, Erika Berman-Rosenzweig, Deepika Bhatla, Joshua A. Blatter, R. Paul Boesch, Matias Bruzoni, Andrew Bush, Michael Bye, Kai Håkon Carlsen, Anne B. Chang, Stephanie D. Chao, Michelle Chatwin, Bimal Pankaj Chaudhari, Lyn Chitty, Nicola Collins, Dan M. Cooper, Jonathan Corren, Robin T. Cotton, Andrea Coverstone, Suzanne Crowley, Steve Cunningham, Garry R. Cutting, Dorottya Czovek, Charles L. Daley, Gwyneth Davies, Jane C. Davies, Alessandro de Alarcòn, Emily M. DeBoer, Marietta Morales De Guzman, Sharon D. Dell, Robin Deterding, Gail H. Deutsch, Sunalene Devadason, William Graham Fox Ditcham, Jill Dorsey, Francine M. Ducharme, John Engelhardt, Mark L. Everard, Leland L. Fan, Albert Faro, Thomas Ferkol, Louise Fleming, Angela Mary Fonceca, Hammad A. Ganatra, Amy Michelle Garcia, David Gozal, Diane Gray, Anne Greenough, Uta Griesenbach, Jonathan Grigg, James S. Hagood, Jürg Hammer, Aaron Hamvas, Jonny Harcourt, Pia J. Hauk, Ulrich Heininger, Alexander John Henderson, Marianna M. Henry, Richard J. Hewitt, Heather Young Highsmith, Noah H. Hillman, Heather Ellen Hoch, Jeong S. Hyun, Mas Suhaila Isa, Adam Jaffé, Lance C. Jennings, Alan H. Jobe, Ankur A. Kamdar, Bhushan Katira, Brian P. Kavanagh, James Kemp, Carolyn M. Kercsmar, Leila Kheirandish-Gozal, Wilson King, Paul Kingma, Jennifer Knight-Madden, Alan Paul Knutsen, Alik Kornecki, Usha Krishnan, Geoffrey Kurland, Hugh Simon Lam, Claire Langston, Ada Lee, Margaret W. Leigh, Daniel Lesser, Clare M. Lloyd, Anna Maria Mandalakas, Paulo J.C. Marostica, Stacey L. Martiniano, Jennifer Maybee, Karen M. McDowell, Peter Michelson, Aaron Samuel Miller, Claire Kane Miller, Ayesha Mirza, David R. Murdoch, Christopher J.L. Newth, Andrew Gordon Nicholson, Jerry A. Nick, Christina J. Nicolais, Terry L. Noah, Lawrence M. Nogee, Blakeslee Noyes, Andrew H. Numa, Ann-Christine Nyquist, Hugh O'Brodovich, Matthias Ochs, J. Tod Olin, Øystein Olsen, Catherine Owens, Howard B. Panitch, Hans Pasterkamp, Donald Payne, Scott Pentiuk, Jeremy Prager, Jean-Paul Praud, Andrew P. Prayle, Bernadette Prentice, Philip E. Putnam, Alexandra L. Quittner, Shlomit Radom-Aizik, Suchitra Rao, Mobeen Rathore, Gregory J. Redding, Michael Rutter, Estefany Saez-Flores, Sejal Saglani, Rayfel Schneider, Kenneth O. Schowengerdt, Marcelo C. Scotta, Thomas Semple, Laurie Sherlock, Ram N. Singh, Raymond G. Slavin, Peter Sly, Bjarne Smevik, Keely Garrett Smith, Jonathan Spahr, James M. Stark, Jeffrey R. Starke, Renato T. Stein, Paul C. Stillwell, Dennis C. Stokes, Daniel T. Swarr, Stuart Charles Sweet, Stanley James Szefler, Paul Tambyah, Christelle Xian-Ting Tan, James Temprano, Chad M. Thorson, Bruce C. Trapnell, Brian Michael Varisco, Timothy J. Vece, Harish G. Vyas, Ruth Wakeman, Colin Wallis, Jennifer Wambach, Daniel J. Weiner, Anja M. Werno, Susan E. Wert, Jeffrey A. Whitsett, Robert William Wilmott, Robert E. Wood, Christopher Todd Wootten, Marie Wright, Sarah Wright, Rae S.M. Yeung, Takeshi Yoshida, Carolyn Young, Lisa R. Young, Heather J. Zar, Pamela Leslie Zeitlin, David Zielinski

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::34d96ab4068e695d68baf2fc1b6f5cab
https://doi.org/10.1016/b978-0-323-44887-1.00085-7

Translational Research and Clinical Applications in the Management of Cystic Fibrosis

Autor: Estefany Saez-Flores, Christina J. Nicolais, Alexandra L. Quittner, Ruth Bernstein

Publikováno v: Emerging Issues in Family and Individual Resilience ISBN: 9783319260310

Cystic fibrosis (CF) is a life-shortening and recessive genetic disorder that affects approximately 1 in 2500 live births worldwide. The disorder affects the functions of multiple organs including the lungs, pancreas, liver, and reproductive system a

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::431d6e1eac21e36cbc70a7574f035692
https://doi.org/10.1007/978-3-319-26033-4_4

245 Screening depression and anxiety in patients with cystic fibrosis and parent caregivers: preliminary results from a pilot program at pediatric and adult CF centers

Autor: A. Colin, P.B. Pedreira, Christina J. Nicolais, Alexandra L. Quittner, Estefany Saez-Flores, Matthias Salathe

Publikováno v: Journal of Cystic Fibrosis. 15:S113-S114

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_________::9e43d0478d2671fb7957ceaabaf135f6
https://doi.org/10.1016/s1569-1993(16)30484-2