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Hospital Discharge for Children with Medical Complexity and Adverse Events
Hannah Challaa DNP, APRN, CPNP-AC, CPN
Affiliations: aPhoenix Children’s Hospital, Phoenix, Arizona
Address correspondence to ______
Short title: Adverse Events and the Child with Medical Complexity
Conflict of Interest Disclosures (includes financial disclosures): Hannah Challa is employed by
Phoenix Children’s Hospital as a nurse.
Funding/ Support: No funding.
Abbreviations: Case Mix Index (CMI); Child(ren) with Medical Complexity (CMC); Children and
Youth with Special Health Care Needs (CYSHCN); Care Transition Measurement Tool - 15 (CTM15); Institutional Review Board (IRB); legally authorized representative (LAR); Length of Stay
(LOS)
Article Summary
…………
What is Known on This Subject
There is limited data on identifying and understanding adverse events related to hospital
discharge transition for children with medical complexity. The last large landmark retrospective
study to investigate adult post-discharge adverse event prevalence occurred in 2003.
Retrospective chart studies do not capture any uncharted data.
What This Study Adds
This study adds to the emerging data on challenges faced by families who have a child with
medical complexity. This interactive study is unique in how it identifies and addresses issues
before, during, and after discharge using measurement tools, interview questions, and chart
reviews. Implications could translate into potential cost savings, focus areas for adverse event
reduction, and prevent harm.

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Contributors’ Statement Page

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Abstract
Objective
To understand and prevent adverse discharge events, the project assesses the needs and gaps
of discharge care coordination for child(ren) with medical complexities (CMC). The National
Survey of Children’s Health show 87.4% of CMC does not receive care in a well-functioning
system, and 47.4% did not receive adequate care coordination 1. Therefore, does initiating
measurement tools and communication before and after discharge identify and prevent
discharge related adverse events?
Methods
After IRB approval, a mixed-methods approach project occurred at southwestern pediatric freestanding hospital. Through eight weeks of convenience sampling, CMC caregivers were
recruited in the inpatient setting (n=5). Qualitative and quantitative data were obtained
through: [Pediatric] Care Transitions Measurement Tool – 15 (CTM- 15), with a Cronbach’s
alpha of .932; a demographics survey; a post-discharge survey; and electronic health records.
Results
The CTM-15 post-discharge score was 83.3 (N = 4, SD = 9.83, SEM = 4.92). CTM-15 qualitative
data included: communication issues; rushed discharge; poor discharge anticipatory guidance;
hospital policy concerns; follow-up appointment issues; and prescription errors. LOS average
for all participants was 137.8 days (SD = 102.75, SEM = 45.95) and 40 hospital days were
unintended (SD = 41.55, SEM = 18.51). Issues encountered 30 days post-discharge included:
prescription errors, follow-up issues, and home health issues.
Conclusion
Hospitalized CMC have an increased risk to encounter a discharge adverse event
because of a complex intertwining of disciplines, services, medications, and needs.
Communication, tools, and surveys did not capture all the problems encountered by families
with CMC; however, it did identify areas of notable concern.

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Main Body of Manuscript

Introduction
Hospitalized children and families look forward to hearing the words “ready for
discharge.” However, the transition from hospital to home for children with medical complexity
(CMC) can be a tumultuous time full of errors, miscommunication, delays, and uncertainty. A
mixed-methods approach project aims to understand and prevent adverse discharge events by
assessing the needs and gaps of discharge care coordination for CMC.
CMC is a subset of children and youth with special health care needs (CYSHCN) that are
medically fragile children or youth with chronic conditions that interfere with activities of daily
living requiring multiple health resources and services 3–6. Although estimations on population
vary, there is a consensus across literature that the CMC population is increasing. Despite the
rise in the population, aspects of pediatric medical care lag, including quality care coordination
throughout the discharge transition.
Malfunctioning healthcare systems and poor care coordination can lead to adverse
hospital discharge events. The National Survey of Children’s Health statistics show that 87.4% of
caregivers with a CMC expressed their child does not receive care in a well-functioning system,
and 47.4% thought they did not receive adequate care coordination 1. In other words, almost 9
million CMC struggled to obtain care in a well-functioning system, and 3.7 million CMC had
suboptimal care coordination.
A pediatric hospital in the Southwestern United States has performed over 130
tracheotomies since 2019. Their airway unit has an average Case Mix Index (CMI) of 2.57 of 5.6
with an average length of stay (LOS) of 12 days 7. The CMI and LOS can vary for children with
new tracheostomies, but their LOS is notably longer. Caregivers and healthcare providers have
raised safety and efficiency concerns regarding the discharge transition period. Therefore, does
initiating measurement tools and communication before and after discharge identify and
prevent discharge related adverse events?
Methods
Framework
The projects’ theoretical framework is the Chronic Care Model developed by Ed Wagner
8. The IOWA Model Revised provides the implementation framework 9.
Setting
A free-standing 430-bed pediatric hospital in the Southwestern United States with a 24bed airway unit is the project setting.
Population
The identified population of CMC for this project is pediatric patients less than 18 years
old with a new tracheostomy who had a legally authorized representative (LAR) with English
proficiency. Other inclusion criteria for the participants includes: an inpatient bed on the airway
unit, one or more pieces of durable medical equipment, and greater than one medical
diagnosis. These inclusion criteria help narrow the population to pediatric patients with
complexities.
Recruitment
The project lead recruited participants through convenience sampling on the airway unit
for eight weeks with the help of the unit’s tracheostomy educator. The lead approached the
prospective participant’s LAR to introduce and provide information about the project. The LAR

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had 24 hours to contemplate participation in the project. The 24-hour timeframe respects the
family’s autonomy and decision-making during a vulnerable time. However, if the LAR
expressed interest sooner, they could participate.
Design
After Institutional Review Board (IRB) expedited review approval, a mixed-methods
approach project recruited caregivers with children with new tracheostomies through
convenience sampling in the inpatient setting to gain insight into the problems surrounding
discharge for CMC. The [Pediatric] Care Transitions Measurement Tool – 15 (CTM- 15), with a
Cronbach’s alpha of .93, gathered pre- and post-discharge hospital transition data using a Likert
scale 2. A demographics survey, a post-discharge survey, and chart reviews also collected
quantitative and qualitative data to identify possible correlations or specific issues not
addressed by the CTM-15.
The post-discharge survey created for the project was composed of seven questions: (1)
Was your transition from hospital to your home smooth?; (2) Do you have any concerns right
now?; (3) Do you have all the equipment, medication, formula, etc. you need?; (4) Have you
had any problems with your equipment, medication, formula, etc.?; (5) Do you feel safe to care
for your child?; (6) Do you anticipate you will need additional help or resources before your
child’s next follow-up appointment?; and (7) Do you think the number of days at the hospital
could have been reduced?.
The project lead met the caregiver while inpatient greater than one week before
discharge to administer the demographics survey and CTM-15 to gather baseline data. After 24
– 72 hours post-discharge, a phone interview collected data for the CTM-15, followed by the
post-discharge surveys. When actionable items arose, the lead contacted the corresponding
person related to the issue to provide clarity or resolution for the family.
Results
Demographics
Five LARs with children with new tracheostomies were identified to participate in the
project. The LARs were primarily Hispanic or Latina single mothers with a high school degree or
some college. The children were male, mainly Hispanic or Latino, and predominantly less than
two years old. Each child had more than two medical conditions requiring care from several
specialties. The average number of specialties involved in each child’s care is 10 (SD = 2.92, SEM
= 1.30). Each child had two or more pieces of durable medical equipment at discharge.
CTM-15 & Post-discharge survey
The average pre-discharge score for CTM-15 was 32.4 and post-discharge score
increased to 83.3 (N = 4, SD = 9.83, SEM = 4.92). Verbally administering the CTM-15 after
discharge provided additional qualitative data. The LAR expressed concerns or questions after
providing the Likert scale answer.
Qualitative data gathered through the CTM-15 included: communication issues between
families and providers; rushed discharge process; lack of anticipatory guidance after discharge;
concerns about hospital policy; follow-up appointment issues; and prescription errors. The
post-discharge questions revealed parental worries, errors, communication issues, and followup concerns. Of note, two participants had medication prescription errors. One error was found
at discharge and was corrected; however, the other medication error was found after discharge
during the post-discharge survey questions.

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Electronic health records
Average LOS for all participants was 137.8 days (SD = 102.75, SEM = 45.95). After
reviewing the electronic health records, prolonged stays averaged an additional 40 days (SD =
41.55, SEM = 18.51). Additional LOS increased because incomplete tracheostomy education and
home health services or supplies were unavailable. Two of the five participants had prolonged
LOS because of preventable hospital-acquired conditions. The average of three participants
who received a CMI score was 9.78 (SD = 4.27, SEM = 2.14). Two participants’ CMI scores were
unable to be calculated by the end of the project. Issues encountered at or up to 30 days postdischarge included: two formula prescription errors, four follow-up concerns, and one home
health service issue.
Discussion
Although the project has a small sample size, each participant encountered issues
before and 30 days after discharge. All but one patient had unintended extended LOS.
Influencing factors that could contribute to extended LOS include the COVID-19 pandemic. The
pandemic led to alterations in medical staffing, higher rates of professionals leaving the field of
medicine, and increased the turnover rate across many hospitals. The pandemic has also
altered home healthcare services availability, access to medical supplies, shortages of medical
equipment, and other resources.
The airway unit is noted to have a high turnover rate with an increased rate of traveling
nurses during the project’s implementation in the fall of 2021. The loss of core nursing staff can
alter the family’s education for tracheostomies, lead to inconsistent continuity of care, and loss
of knowledge on hospital policies and procedures. Considering the reduction in core nursing
staff, it can contribute to some of the quantitative discharge delay findings of prolonged
education of tracheostomies and oversights found 30-days post-discharge. However, it cannot
account for all the delays, the extent of delays, or errors.
Every extra day a child stays in the hospital, their risk of acquiring preventable hospitalacquired conditions (HACs) increases. Many of these acquired conditions extend LOS and
increase the risk of mortality. The project’s population is at increased risk of encountering HACs
because of complex disease processes, multiple medications, frequent encounters with the
hospital, and multiple pieces of durable medical equipment. The project identified two
medication errors and two preventable HACs. The average cost of adverse drug events incurred
is $5,746 10. Ventilator-acquired pneumonia incurred a cost average of $19,325-$80,01310. One
child could have avoided the intensive care unit and a HAC if there had been improved
communication among disciplines. The other child could have avoided a HAC if home health
resources had been available. Therefore, improved communication and care coordination had
the potential to avoid additional LOS, associated problems with longer LOS, and financial
burden.
The CTM-15 captured some qualitative data before administering the post-discharge
questions, but the post-discharge questions allowed for further elaboration beyond the specific
questions of the CTM-15. Despite providing insightful information, the measurement tool did
not produce data of statistical significance the small sample size. Not all of the barriers and gaps
in the discharge transition were identified using the CTM-15 or post discharge survey. The 30day chart reviews helped discover additional problems that verbal communication and the
CTM-15 did not capture.

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Limitations
This study has several limitations: small sample size; limiting inclusion and exclusion
criteria; participants were predominantly male with a mother; limited project timeframe; and
pandemic-related issues. One participant did not complete the post-discharge survey and CTM15 the inability to reach the participant after discharge. The limitations of the study affect its
generalizability to all children with medical complexities. A larger sample size could be obtained
with a longer allotted timeframe, more than one unit involvement, and additional LARs fluent in
other languages to improve results and the overall impact for this patient population.
There was also variation in the project’s administration of the surveys of pre-discharge
and post-discharge. Pre-discharge surveys were conducted on paper and self-reported, whereas
the post-discharge survey was administered verbally over the phone. The oral administration of
the surveys and tools allowed more for conversation between the LAR and the project lead,
leading to additional qualitative data findings. The qualitative data gathered supported their
Likert scale rating on the CTM-15 or their YES/ NO answer from the post-discharge survey.
Sustainability
This project lays the initial foundation for a 2-year pilot. This study will designate a nurse
practitioner and clinical navigator to engage with families who have CMC in the inpatient
setting to oversee medical management and care coordination to improve outcomes and
decrease adverse events. Similar programs with patients who have oncological diagnoses or
who have undergone solid organ transplant have shown success when patients are followed
from the inpatient to the outpatient.
Conclusion
Hospitalized CMC have an increased risk of encountering an adverse event in the
discharge transition because of a complex intertwining of disciplines, medical services,
medications, and healthcare needs. Communication, discharge tools, and surveys did not
capture all the problems encountered by families with CMC; however, it did identify areas of
notable concern.
In addition, although the project has a small sample size, several actionable care coordination
items are identified to improve the patient care for CMC. First, increased communication before and
after discharge could prevent adverse events and decrease LOS. Second, a thorough review of
prescriptions before discharge could prevent medication and formula errors. Third, improving or
standardizing tracheostomy education could reduce LOS. Addressing each actionable care coordination
item can reduce overall LOS improving resource use, cost savings, and patient safety.

Implications & Recommendations
The small sample size does not capture the prevalence of discharge transition issues for
CMC; therefore, rates could be higher than anticipated. Continued investigation into gaps and
barriers will provide an understanding of associated adverse events. Further studies with longer
timeframes are needed to verify the prevalence of adverse events and identify trends.
One solution to the problem could be a designated point of contact for these families
for the in-between stage “after discharge/ before first follow-up”. A designated point of contact
might improve communication and reduce adverse events for this population. However, further
studies are needed to evaluate the benefits.

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