Participants and procedures
Over a 4-year period starting July 2016, a SDM process (Figure 1) was
implemented in routine care of patients with chronic respiratory failure
(CRF) who were < 21 years old, admitted to an inpatient
pediatric service, and for whom tracheostomy was a consideration.
Eligible patients were identified by the investigators as part of usual
care, without implementation of a specific screening procedure.
Initially two core elements comprised the protocol, the first of which
included sharing educational material with the family. This included a
patient decision aide called The Child Tracheostomy Decision
Guide10 created by Winnipeg Regional Health Authority,
which meets most of the standards set by the International Patient
Decision Aid Standards Collaboration11. The second
core element was comprised of 12 key questions designed to elucidate
medical and psychosocial information which the working group deemed
integral to making an informed decision. The SDM protocol was only
implemented in one patient during the first year, after which time a
third core element was added to the protocol- consultation of the
pediatric palliative care team.
Each of the 3 investigators independently performed retrospective chart
reviews on 1/3 of the 29 patients deemed evaluable. Data collection
focused on the three core elements of a medical microsystem: the
patient, the provider and information9. After
determining in which hospital admission the decision occurred, the
investigators extracted data using detailed questions in a REDCap
database. Finding much of the data, such as medical diagnoses and
information on the SDM process, required the medical expertise and
judgement of the investigators, all of whom were fellowship trained
pediatric physicians. To address concerns regarding inter-reviewer
reliability, a second chart review was performed on each patient by a
different investigator, without knowledge of the previous data
collection. Investigators then compared the two analyses for congruence
and reconciled any discrepancies by consensus re-review of the medical
record. During the re-review process, there were two inter-reviewer
differences regarding which admission to review, both of which were
resolved by consensus opinion.