Download Care of Children with Medical Complexity in the Hospital Setting

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Care of Children with Medical
Complexity in the Hospital Setting
Christopher J. Russell, MD; and Tamara D. Simon, MD, MSPH
Abstract
Christopher J. Russell, MD, is Assistant
Professor of Clinical Pediatrics, Division of
Hospital Medicine, Department of Pediatrics, Keck School of Medicine, University of
Southern California, and Children’s Hospital
Los Angeles. Tamara D. Simon, MD, MSPH,
is Assistant Professor of Pediatrics, Division
of Hospital Medicine, Department of Pediatrics, University of Washington, and Seattle
Children’s Hospital.
Address correspondence to: Christopher
J. Russell, MD, Division of Hospital Medicine,
Children’s Hospital Los Angeles, 4650 Sunset Boulevard, Mailstop #94, Los Angeles,
CA 90027; email: [email protected].
Disclosure: The authors have no relevant
financial relationships to disclose.
doi: 10.3928/00904481-20140619-09
© Shutterstock
Children with medical complexity are a subset of patients with special health care
needs whose “health and quality of life depend on integrating health care between a
primary care medical home, tertiary care services, and other important loci of care such
as transitional care facilities, rehabilitation units, the home, the school, and other community based settings,” according to Cohen et al. These children are characterized by (1)
substantial health care service needs, (2) one or more severe chronic clinical condition(s),
(3) severe functional limitations, and (4) high projected use of health resources that
may include frequent or prolonged hospitalization, multiple surgeries, or the ongoing involvement of multiple subspecialty services and providers. Children with medical complexity are an important population for pediatric hospitalists, particularly those
practicing in tertiary care settings. Recent studies describe the increasing prevalence
of complex chronic conditions among all pediatric hospitalizations in the United States.
This article reviews the definitions of children with medical complexity and recent
studies describing the changes in hospital utilization for this group. We discuss issues in their inpatient care, including (1) intensive care coordination needs, (2) critical decision-making that occurs in the inpatient setting, (3) common clinical issues
that occur with technology dependence (tracheostomies, feeding tubes, and cerebrospinal fluid shunts), and (4) common reasons for admission (eg, perioperative care,
aspiration pneumonia, seizures, and feeding intolerance). Finally, we present a few
important clinical questions regarding inpatient care for children with medical complexity that will require research in the coming years. [Pediatr Ann. 2014;43(7):e157–e162.]
PEDIATRIC ANNALS • Vol. 43, No. 7, 2014
e157
CME
CLINICAL VIGNETTE
is a 20-year-old male with cerebral palsy, seizure disorder,
intellectual disability with impaired communication, and gastrostomy tube-dependence who presented
to his orthopedic surgeon for surgical
correction of his severe neuromuscular
scoliosis. Because of concerns about
C’s multiple medical comorbidities and
increased risk for perioperative morbidity/mortality, the surgeon requested
a preoperative consultation with a pediatric hospitalist. Preoperative assessment identified several potential
problems: (1) gastroesophageal reflux
that resulted in feeding intolerance and
poor nutritional status, (2) constipation
requiring manual disimpaction on a
daily basis by his mother, (3) restrictive
lung disease, leading to anticipation of
a prolonged postoperative intubation,
(4) well-controlled seizure disorder,
(5) impaired communication ability,
creating challenges with post-operative
pain control, and (6) need for wheelchair refitting to permit postoperative
use. The medical team initiated an aggressive bowel management program
and optimized gastroesophageal reflux
treatment, improving C’s feeding tolerance and allowing him to gain 8 pounds
preoperatively.
C underwent a prolonged posterior
spine fusion surgery. He remained intubated for 2 days in the intensive care
unit, with large fluid shifts requiring
careful management. C was extubated
to room air on postoperative day 3 and
transferred to the floor of the orthopedic
team with hospitalist co-management.
The team managed his pain aggressively
and mobilized him in consultation with
physical therapy. He developed feeding
intolerance that improved after multiple
attempts at feeding. He was discharged
home 10 days later with home nursing.
C’s mother was delighted that C was
able to sit upright in his chair and participate in family activities again.
C
e158
DEFINING CHILDREN WITH
MEDICAL COMPLEXITY
As described by van der Lee et al.,1
the lack of an unequivocal definition of
the concept of chronic health conditions
in childhood has resulted in diverse approaches to operationalizing the measurement of its prevalence. In the 1990s,
a noncategorical approach to defining
chronic health conditions was promoted
in response to diagnosis-based approach-
CMC require intensive
care coordination that
often becomes the parents’
or other adult caregiver’s
responsibility.
es; this new approach focuses on the
functional limitations resulting from a
given health condition, and thus considers the similar consequences of diverse
diagnoses.2 One of the most prevalent
noncategorical definitions for pediatric
chronic health conditions, used by the
Maternal and Child Health Bureau since
1998, is that of children with special
health care needs (CSHCN), defined as
“children who have or are at increased
risk of a chronic physical, developmental, behavioral, or emotional condition
and who also require health care and
health care related services of a type or
amount beyond that required by children
generally.”3,4 Among CSHCN, considerable variation exists in the extent of their
medical complexity, functional limitations, and need for resources.5
Some of the most severely ill CSHCN
are frequently cared for in the inpatient
setting, and many hospital-based providers recognized a need to better identify this group for programmatic and
research purposes. A recent review article proposed a definitional framework
for children with medical complexity
(CMC), suggesting that for this smaller
set of CSHCN, their “health and quality
of life depend on integrating health care
between a primary care medical home,
tertiary care services, and other important loci of care such as transitional care
facilities, rehabilitation units, the home,
the school, and other community based
settings.”6 CMC are characterized by
(1) substantial family-identified health
care service needs, such as medical,
specialized therapy, and education, (2)
presence of one or more chronic clinical condition(s), either diagnosed or unknown, that are severe and/or associated
with medical fragility (eg, high morbidity and mortality), (3) functional limitations that are typically severe and may
require assistance from technology, and
(4) high projected use of health resources
that may include frequent or prolonged
hospitalization, multiple surgeries, or the
ongoing involvement of multiple subspecialty services and providers.6 One representation of CMC in relation to CSHCN
is provided in Figure 1.
HEALTH SERVICE USE BY CMC
Despite issues with the definition,
CMC are an important and significant
population for pediatric hospitalists, particularly those in tertiary care settings.
Recent studies have described the increasing prevalence of complex chronic
conditions among all pediatric hospitalizations,7,8 as well as those at children’s
hospitals, in the United States.9 Simon
and colleagues7 found that, in 2006,
children with complex chronic conditions accounted for approximately 10%
of all pediatric hospital admissions, 40%
of pediatric hospital charges, and 70% to
90% of technology use.
Hospitalization rates of children with
diagnoses of more than one chronic complex condition doubled between 19911993 and 2003-2005.8 In response to this
growing demand, many hospitals have
established clinical programs that provide
care coordination for CMC. Children in
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CME
THEMES IN INPATIENT CARE FOR
CMC
CMC require intensive care coordination that often becomes the parents’
or other adult caregiver’s responsibility. Caregivers experience difficulty
navigating the health care system, leading to fragmented care and increased
monetary expenditures. Ethnographic
work conducted among CSHCN suggests that “the system is characterized
not only by fragmented services but also
by an absence of any efforts to integrate
them.”13 Given the number of inpatient
subspecialists and outpatient providers
participating in the care of CMC, interdisciplinary teams are crucial for improving patient outcomes and cost containment. In 2002, Children’s Hospital
of Wisconsin created the Special Needs
Program to improve care coordination
and create partnerships between primary
care physicians (PCPs) and the tertiary
care center for 200 CMC with frequent
or prolonged hospital admissions who
regularly see multiple subspecialists
PEDIATRIC ANNALS • Vol. 43, No. 7, 2014
All children
Image courtesy of Christopher J. Russell, MD.
these programs experience repeated hospitalizations, prolonged hospital stays,
and 30-day readmission rates of approximately 25%.10 Recent work using administrative data has identified CMC as
those who have one of two hallmarks for
complexity: a complex chronic condition
and/or the presence of technology. Using
this approach in hospital administrative
data, Berry et al.10 found this group experiences recurrent readmission to tertiary
children’s hospitals, with 3% of patients
accounting for 19% of inpatient admissions and 23% of inpatient charges. Using this approach in a population-based
sample in Ontario, Cohen et al.11 found
that CMC experience 30-day readmission rates ranging from 12.6% to 23.7%
and account for one third of child health
spending in Ontario. Given the emphasis
on reducing the costs of health care, we
anticipate increased attention to CMC in
coming years.12
CSHCN
CMC
Figure 1. A representation of children with medical complexity (CMC) in relation to children with
special health care needs (CSHCN).
(average > 7). This program, consisting of an inpatient consultation service
and intensive outpatient care coordination, demonstrated significant decreases
in frequency of hospital admissions,
hospital days, and charges.14 Using a
hospital-based, outpatient comprehensive care clinic, Casey and colleagues15
found similar decreases in inpatient admissions, length of stay, and costs for
Medicaid-insured, medically complex
pediatric patients. Complex care coordination is not limited to the tertiary care,
center-based hospital setting; Cohen and
colleagues have been able to translate
their successful care coordination model
targeting children with technology assistance or having high intensity of care16
to the community-based settings with
reductions in overall costs, inpatient
hospital days, and inpatient hospital
days at the tertiary care hospital.17
In the absence of dedicated interdisciplinary teams, other care coordination efforts that may benefit CMC
include shared care plans18 and intense
medication reconciliation.19 Care coordination models may benefit from
integrating pharmacists to improve accuracy of medication reconciliation and
to decrease adverse drug events. Finally,
primary care and inpatient providers for
CMC can greatly improve their care by
coordinating with physical therapy, occupational therapy, and/or school services.
Critical decision making for CMC often occurs on a non-elective basis in the
inpatient or intensive care settings.20,21
The Institute of Medicine has made
shared decision-making a research priority, and the literature confirmed parental
preference for a shared decision-making
model in varied care settings.22,23 In the
context of difficult decisions without
clear answers, shared decision-making
between the clinical team and the decision makers may help empower families. Despite efforts to improve shared
decision-making, some families contemplating gastrostomy-tube placement
report that they feel coerced with limited
or no choice in the decision,24 and state
that they receive inadequate information
or support during the decision-making
process.22 Hospital-based physicians
face additional unique challenges in
prognostication, given their decreased
exposure to longitudinal illness trajectory and parent/patient outpatient experiences. Nonetheless, because changes
in clinical status precipitate admissions,
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TABLE 1.
Technology Malfunction Among Children with Medical Complexity
Gastrostomy Tube
Indication
Ways to place
Feeding rate
If dislodged, how is it
replaced?
Jejunostomy Tube
• Inability to meet caloric intake through
oral feedings
• Recurrent aspiration
• Aspiration
• Severe delayed gastric emptying
• Upper gastrointestinal tract anatomic
abnormalities
• Inability to tolerate Nissen fundoplication
• Percutaneous (by gastroenterology)
• E ndoscopic
• Surgically (laparoscopic, open)
• Interventional radiology
• S urgically (may require Roux-en-Y
procedure)
• Bolus or continuous
• Continuous
• Continuous
• <4 to 12 weeks since placement: needs
replacement in medical setting with
confirmation
• Endoscopic
•U
sually replaced by general surgeons, emergency physicians
• Severe gastroesophageal reflux disease
• Interventional radiology
•U
sually requires confirmation
• >4 to 12 weeks: may be replaced at
home, often confirmation not needed
Notes
they provide an opportune time to clarify and alter goals of care.
CLINICAL ISSUES IN INPATIENT
CARE FOR CMC
Technology Issues
CMC have high rates of technology
assistance.11 Children enrolled in complex care coordination services have
high rates of gastrostomy tube (56%),
cerebrospinal fluid (CSF) shunt (13%),
and tracheostomy tube-dependence
(12%), with technology malfunction
accounting for approximately 10% of
all admissions.10 Additional technology
that CMC may also be dependent on
includes vagal nerve stimulators, intrathecal baclofen pumps, cardiac pacemakers, and central venous catheters (a
more in-depth discussion of this topic is
beyond the scope of this article).
Children unable to meet their nutritional needs through oral intake often require percutaneous feeding tubes. Other
indications for feeding tubes include
aspiration, poor oromotor intake, gase160
Gastrojejunostomy Tube
• I f clogged, consider trial of carbonated beverage or pancrelipase/
bicarbonate
troesophageal reflux, or other feeding
intolerance. Three main types of tubes
include gastrostomy tube, gastrojejunostomy tube, and jejunostomy tubes. The
tubes vary in several ways, including
indication for placement, ways to insert, and problems that commonly occur
(Table 1). In general, using a gastrostomy tube is preferable, as this provides
nutrition in a more physiologic manner,
allows for attempts at bolus feedings,
and can be replaced at home without an
emergency department visit.
Children may develop hydrocephalus due to a variety of congenital or
acquired causes. Although the placement of CSF shunts permits children
with hydrocephalus to survive, it often
causes new medical and surgical problems.25,26 The most common shunt apparatus diverts CSF from the ventricles
to the peritoneal space (eg, ventriculoperitoneal shunt), although shunts
to the atrial (eg, ventriculoatrial) and
pleura (eg, ventriculopleural) spaces
are also used. CSF shunt failures cause
• Difficult to maintain
•N
o ability to return to less-invasive
feeding
increased intracranial pressure and require hospitalization and surgical revision. Shunt infection, a more serious
complication, typically requires two
surgeries and a prolonged intravenous
antibiotic treatment course.27,28 Evaluation of shunts suspected to be failing
and/or infected include a shunt series
to evaluate the tubing, head imaging to
evaluate the size of ventricles and compare with baseline, and consideration of
CSF cultures.
Children with chronic respiratory
failure or anatomic abnormalities may
benefit from tracheostomy placement to
improve respiratory status. Despite the
benefits of tracheostomy placement,
this subset of patients has readmission rates as high as 60% and mortality rates as high as 10% within the first
6 months.29 Because tracheostomies
bypass the upper airway (and its protective effects), these patients have increased risk for infectious respiratory
tract infections that may require antibiotic treatment and hospitalization.
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CME
Diagnosis of lower respiratory tract
infections in patients with tracheostomies is difficult, as these patients often
are colonized with multiple organisms,
including Pseudomonas aeruginosa.
Other complications include decannulation, obstruction, and bleeding. As the
patient’s respiratory failure progresses,
patients may also require initiation of
chronic positive pressure ventilation.
lect groups of patients. The limited data
available highlight the need for rigorous
research on hospital comanagement of
CMC undergoing surgical procedures.
In early 2014, a new American Academy
of Pediatrics (AAP) surgical care subcommittee was chartered under the AAP
Section on Hospital Medicine with one
goal being “to advance a research agen-
Common Reasons for Admission
Major reasons for inpatient admission among CMC enrolled in clinical
programs that provide care coordination
included major surgery (47%), respiratory tract problems (29%), medical technology malfunction (9%), seizure (6%),
and vomiting/feeding difficulties (3%).10
Technology malfunction is discussed in
the previous text and in Table 1.
The clinical vignette at the beginning of this article highlights the importance of perioperative management of
CMC. Despite the majority of pediatric
hospitalists reporting that they provide
surgical comanagement services, little
research evaluates surgical comanagement of CMC. Preoperative management may focus on general medical
clearance, evaluation of cardiopulmonary status, and optimizing nutritional
status (as malnutrition is associated
with poorer outcomes in complex pediatric patients).30,31 In one large pediatric
hospital, 72% of patients undergoing
spinal fusion for neuromuscular scoliosis had specific recommendations made
on medication or nutrition changes, as
well as further diagnostic work-up after
evaluation by pediatric hospitalists.32
The limited studies on postoperative
comanagement of patients undergoing posterior spinal fusion suggest that
hospitalist comanagement may decrease
overall length of stay,33 decrease use of
parenteral nutrition,34 and decrease the
number of postoperative laboratory tests
completed,34 although these findings are
not consistent and may be limited to se-
Seizures are another frequent
reason for admission for
CMC. A detailed seizure
history can be helpful.
PEDIATRIC ANNALS • Vol. 43, No. 7, 2014
da in collaboration with our hospitalist,
surgical, and other partners to inform the
care of surgical patients.”35
Aspiration pneumonia, a common
admission diagnosis for CMC, is defined as clinical signs of a lower respiratory tract infection (eg, cough, increased
tracheostomy secretions, fever, and hypoxia) associated with a witnessed or
suspected choking or vomiting event.
Diagnosis of aspiration pneumonia is
challenging given that aspiration events
may not be witnessed, that this patient
population is at increased risk for community-acquired pneumonias, and that
these patients often have underlying
lung disease. Bacterial causes include a
mixture of gram-positive and anaerobic
bacteria. Evaluation may include routine
laboratory studies (complete blood count
with differential), tracheostomy cultures (if present), and chest radiographs.
Common antibiotics used in treatment
include penicillin-based antibiotics (eg,
piperacillin/tazobactam,
ampicillin/
sulbactam, amoxicillin/clavulanic acid)
and clindamycin. Complications of aspiration pneumonia include development
of lung abscesses or empyema. Research
needed in this area includes a better understanding of risk factors for pneumo-
nias and development of evidence-based
treatment guidelines for pneumonias in
patients with neurological impairment
and/or tracheostomy.
Seizures are another frequent reason for admission for CMC. A detailed
seizure history can be helpful, as at
times it can be challenging to differentiate between increased seizure activity
and similar movements (eg, myoclonic
jerks). The differential for changes in
seizure is broad, and can include concurrent infection, subtherapeutic medication doses (including lack of ketosis
if on ketogenic diet), impaired enteral
absorption of seizure medication, CSF
shunt malfunction, electrolyte abnormalities, and new central nervous system
injury. Evaluation is tailored to the suspected cause, and may include complete
blood count, basic chemistry, urinalysis
with cultures, drug levels, head imaging
if shunt is present, consideration of CSF
studies if febrile, beta-hydroxybutyrate
levels if on ketogenic diet, and consideration of electroencephalogram. The
primary treatment includes treatment of
the underlying cause, and increases in
seizure medications may be necessary.
Feeding intolerance is the inability to tolerate a home-feeding regimen,
as demonstrated by emesis, abdominal distention, or pain. Causes of feeding intolerance include infections (eg,
acute gastroenteritis, Clostridium difficile), infection-associated ileus, small
bowel obstruction, superior mesenteric
artery syndrome, pancreatitis, feeding
tube misplacement, and/or constipation.
Evaluation includes a careful history and
physical examination, screening labs, and
abdominal radiographs (including contrast tube studies). Treatment is directed
at the underlying cause. An important
research question is the optimal feeding
modality for neurologically impaired
children with gastroesophageal reflux
that is refractory to medical management
(gastrostomy tube with Nissen fundoplication versus trans-pyloric feedings).
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CME
CONCLUSION
Children with medical complexity are
an important and growing population for
pediatric hospitalists. CMC will continue
to be a focus of clinical and research efforts given the increased use of inpatient
and outpatient resources, challenges associated with care coordination, and the
variety of medical conditions that affect
CMC. Intensive inpatient (and outpatient) care coordination clinics and targeted interventions may reduce future health
care utilization and hospital readmission
for CMC. Ample opportunities are available to improve the evidence base for
common inpatient clinical issues through
additional health services research and
multicenter research trials.
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Reproduced with permission of the copyright owner. Further reproduction prohibited without
permission.