Funding for this research was provided by:
National Heart, Lung, and Blood Institute (K25 HL125954, R01 HL141286)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (K23 HD062642)
Received: 9 December 2019
Accepted: 28 May 2020
First Online: 18 June 2020
Ethics approval and consent to participate
: Written informed consent was obtained prior to participation in each part of the study. The study received human subjects research approval from the Cincinnati Children’s Hospital Medical Center Institutional Review Board (IRB #2010–1041). The data were obtained from a multisite, cross-sectional study that was performed at two academic pediatric hospitals with accredited CF centers. The original study was approved by the institutional review boards at both sites. Parents were informed by a letter from their child’s pulmonologist of their eligibility for this study and were approached at their child’s next clinic appointment with the opportunity to ask questions, decline to participate, or complete an informed consent form. Once informed consent was obtained from each parent participant, the study coordinator provided him or her a link to log onto a REDCap survey site specific to the study. Each parent participant was asked to complete a series of questionnaires at his or her convenience. Appointments were made for each parent participant to complete three daily phone diary calls, in order to measure adherence. The funders were not involved in the design, patient recruitment, data collection, analysis, interpretation, presentation, writing or editing of any reports relevant to the current study, or the decision to submit for publication. The corresponding author had complete access to all study data and final responsibility for the decision to submit for publication.
: Not applicable.
: The NIH funding received by authors RDS and DHG has not directly influenced any of the research methods and findings reported in this work.