Methods:
Approval was obtained from Cincinnati Children’s Hospital Medical Center (CCHMC) Institutional Review Board. The Transitional Care Center (TCC) is a 24-bed unit housed within the main CCHMC campus that cares for medically complex pulmonary patients who do not require Intensive Care Unit (ICU) level care but require ventilatory support through either a tracheostomy or long term non-invasive positive pressure ventilation. The goal of the unit is to prepare children and their families to transition from hospital to home care. The median length of stay in the unit for children with new tracheostomy and ventilator support is 146 days. It is staffed by a pediatric pulmonologist who rotates on service weekly, as well as a consistent team of APPs. Patients in the TCC are also cared for by nursing staff and respiratory therapists with experience in caring for children with chronic ventilatory needs, as well as specialty teams (Physical Medicine & Rehabilitation, Neurology, Gastroenterology, Otolaryngology) as indicated for specific patients.
The revised moral distress scale (MDS-R) is a validated survey to measure moral distress in those caring for pediatric patients (8-9). It includes 21 statements describing situations known to cause moral distress in clinical practice and is scored on a 4-point Likert scale with respect to frequency and intensity (Appendix 1 ). The survey is scored by multiplying frequency and intensity, with each individual statement having a range of scores from 0-16. The sum of all 21 products gives an overall score of 0-336. Three additional questions regarding institutional support for morally distressing situations were also included in the survey (9).
The MDS-R survey was administered to all pediatric pulmonologists who regularly staff the TCC (N=13), all APPs who work in the TCC (N=18), all full-time (0.8 FTE or higher) nurses who primarily work in the TCC (N=66), and all full-time respiratory therapists who have the TCC as their primary unit (N=30). A total of 127 surveys were administered between January 2020 and March 2020. Surveys were given in paper format to all respondents in their individual mailboxes and returned via an anonymous envelope to study staff. Prior to distribution of the survey, providers were made aware they would be receiving this at the monthly TCC meeting, and a reminder message was shared with all providers one month after initial distribution of the survey.
Survey responses were entered into a secure REDcap database for data analysis. Descriptive statistics were calculated including means and standard deviations or medians and interquartile ranges for continuous data, and frequencies and percentages for categorical data. We examined demographics and characteristics of each population under study, examined response rates, and characterized responses in relation to population characteristics using t-tests, Wilcoxon Rank Sum tests, or chi square tests. We excluded questionnaires from the analysis that had more than three missing MDS-R data points. All statistics were two tailed and considered statistically significant if p<0.05. All analyses were conducted using the SAS 9.4 software (SAS Institite, Cary, NC). The primary outcome measure was the MDS-R score for the studied populations.