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.