improve patient
health, care management
plans in hospitals and academic health
institutes are evolving simultaneously to
allow for better patient care at reduced
costs. That was the conclusion of presenters
at a Health Services and Outcomes
Research session on sickle cell
disease (SCD) management, part of the
56th Meeting of the American Society of
Hematology, held in San Francisco, California,
December 6-9, 2014.
While innovations in drug development
resulting from abnormal hemoglobin,
is associated with lifelong disabilities
and can reduce life expectancy.
The disease affects between 90,000 and
100,000 people in the United States,1 and
a study published in 2009 in the American
Journal of Hematology estimated that
SCD, a commonly inherited blood disorder the annual cost of medical care alone for these patients exceeds $1.1 billion.2
professor, St. Jude Children’s Research
Hospital, presented the model being
evaluated at her institute to manage the
transition of pediatric patients with SCD
into adult care while avoiding the overutilization
of healthcare.
Jane S. Hankins, MD, MS, associate
children with SCD survive into adulthood,
healthcare utilization (HCU) is
highest following transfer to adult care.
Episodes of acute care or emergency department
(ED) visits and hospitalizations
are the primary drivers of these costs,
she said. A review of HCU for SCD from
ED visits and inpatient care in 8 states
has previously shown that young adults
(18 to 30 years old) are more than twice as
likely to visit the ED as patients aged 10
to 17 years or adults aged 31 to 45 years.
Young adults also have more inpatient
stays and the highest percentage of frequent
acute care visits.3 Hankins pointed
out that disease progression alone was
not responsible for the upsurge in HCU.
She rationalized that the failure to establish
a suitable medical home following
pediatric care is also a driver of higher
HCU.
Hankins explained that while most
1 adult and 1 pediatric—partnered
to create the Young Adult Transition
Clinic (YATC) in January 2012 for
patients aged 18 to 25 years.4 YATC became t
he model for addressing inadequate
placement of young adults into
adult care. The YATC at the St. Jude-
Methodist Sickle Cell Disease Transition
Clinic is located at the adult hospital
and signifies 2 levels of overlap between
pediatric and adult care: 1) comanagement
by a pediatric hematologist and an
internist, and 2) case management by a
designated registered nurse coordinator
in the pediatric setting at age 17 years,
which continues in the adult setting up
to age 25 years.4 When asked why the
age limit is 25 years when young adults
can transition into adult care as late as
30 years of age, Hankins explained that
the cutoff was limited by the fact that
there was only a single RN available. All
visits followed a detailed plan of care, including
systematic orientation to adult
care, disease-related education, and self-management
strategies, she said.
At St. Jude, independent SCD programs—
the incidence rates (IRs) and incidence
rate ratios (IRR) for HCU and health
maintenance visits for the 2-year interval
preceding departure from pediatric
care, and the first 2 years following
transfer to adult care, using a repeated
measures model for HCU counts. They
used a disease-specific survey on SCD
pain management, before (pre-score)
and immediately after (post score) an
educational session by the nurse coordinator
during both pediatric and adult
care. These health literacy results were
then compared using Wilcoxon signed
rank test.4
The research group at YATC estimated
January 2012 and July 2014, 59 young
adults (median age 16.3 years at the beginning
of the observation period) with
SCD initiated care at YATC within 3
months of leaving pediatric care. These
patients were exposed to pediatric care
for 2 years (median) and to adult care
for 1.9 years (median). Hankins showed
that while the IRR for HCU between pediatric
and adult care did not change
significantly, IRR for health maintenance
visits decreased from 6.31 in pediatric
to 4.28 during adult care, and a significant
reduction in the 30-day readmission
rate, from 33% to 23%, was observed
following transfer to adult care, without
any influence on the length of hospitalization.
While health literacy definitely
improved in both pediatric and adult
care, pre-scores were significantly higher
during adult care than during pediatric
care (80% vs 90%; P <.0001), without a significant
decline in scores in the mean 12
months after the pediatric (post score)
and before the adult educational session
(pre-score) (100% vs 90%; P =.12).4 According
to Hankins, this was a definite indicator
of knowledge retention. “The overall
attrition rate for YATC was 8.5%; we lost
1 patient to follow-up, while 4 patients
were transferred to another provider for
insurance policy change or following a
personal request. There was 1 death due
to multi-organ failure,” she revealed.
Over a period of 2.5 years, between
home model at YATC was able to successfully
prevent the expected upsurge
in HCU and increase in 30-day readmission
rate; it promoted medical literacy
levels, and prevented high hydroxyurea
utilization. She concluded that the longterm
effectiveness of this medical home
model could be demonstrated with continued
longitudinal follow-up studies.
Hankins emphasized that their medical
Sickle Cell Disease Program of the Children’s
Hospital at Montefiore (CHAM)
and an associate professor of clinical pediatrics
at the Albert Einstein College of
Medicine, presented the subsequent talk,
which detailed a care plan to follow during
hospital admission and at inpatient
to outpatient discharge, with the aim of
reducing HCU.
Hospital readmission has, today, become
a quality-of-care indicator for numerous
chronic conditions, and can be
leveraged to reduce excessive healthcare
costs.5 A brief issued by the Agency for
Healthcare Research and Quality found
that 1 in 5 cases for most of the commonly
treated conditions in hospitals
saw readmission within 30 days. These
include congestive heart failure (24.7%),
schizophrenia (22.3%), and unspecified
renal failure (21.7%). With SCD, the report
suggests, at least 1 in 4 patients were readmitted
at a rate of 31.9%, and interventions
are ongoing at the state and national
levels to reduce the incidence of and
expenses resulting from readmissions.6
Deepa Manwani, MD, director of the
contribute to the high utilization rate, and
not all are modifiable. Increasing age and
psychosocial comorbidities are associated
with a greater length of hospital stay
(LOS), said Manwani, and she identified
18-to-30-year-old patients (as was presented
by Hankins), public insurance, and
admissions for pain crisis as some of the
risk factors associated with a higher 30-
day readmission rate. Studies have shown
that SCD readmission rates could be
greatly reduced by adequate outpatient
follow-up with a trained hematologist on
hospital admission,7 along with written
discharge management guidelines and
intensive patient and provider education
by a nurse educator.8
According to Manwani, multiple factors
“Recruiting additional personnel could
help, but it was not feasible for our practice,”
said Manwani. “So we arrived at a
hypothesis that implementation of an
individualized, multimodal care plan during
inpatient stay and at inpatient to outpatient
discharge will reduce acute care
utilization.” She added that implementing
the comprehensive care plan at this key
transition point was expected to be more
effective due to:
patient/family to accept escalation of
care soon after an acute event
in the event that the
patient does not follow up with a
provider with sickle cell—specific expertise
among inpatient providers, outpatient
providers with specific hematology
expertise, and the multi-disciplinary
team.
• greater psychological readiness in the • decreased instances of “missed opportunities” • improvement in communication
worked on developing an SCD Quality
Improvement Team, which met weekly to
discuss and improve each patient’s plan
of care and interventions, she said. The
team included representatives from the
inpatient team, the primary hematologists,
nursing, social work, psychology,
and pain management. The primary end
points to be achieved were reducing the
30-day readmission rates and LOS, while
secondary end points included admission
rates, ED return rates, and cost savings.
The SCD program at CHAM then
and comprehensive implementation of
best practice guidelines, improved pain
management strategies, a multimodal
approach to patient care, and utilization
of the hospital admission as an opportunity
to design a comprehensive care
plan,” said Manwani. The study design
compared data from 3.5 years before to 1
year after the initiation of the transition
intervention.
based on the results presented by Manwani.
The analysis identified a significant
reduction in LOS by 10% and 30-day
readmission rate reduced by 38%. These
results were even more significant in the
18-to-21-year age group. The team did
not observe any concurrent increase in
ED visits (3 and 7 days), and, more significantly,
a reduction in the 3-day ED return
rate in older patients was discerned.
EBO
The program was definitely successful,
References
.cdc.gov/ncbddd/sicklecell/about.html. Updated
January 16, 2014. Accessed December 10, 2014.
1. Sickle cell disease. CDC website. http://www
in US. Reuters website. http://www.reuters
.com/article/2009/07/03/us-sickle-cell-idUSTRE5623EL20090703.
Published July 3, 2009.
Accessed December 11, 2014.
2. Sickle cell disease healthcare costs high
TH. Barriers in transition from pediatrics to adult
medicine in sickle cell anemia. J Blood Med.
2012;3:105-112.
3. Lebensburger JD, Bemrich-Stolz CJ, Howard
medical home model with overlap of pediatric and
adult care mitigates the upsurge in health care
utilization post-transfer to adult care in sickle cell
disease. Blood. 2014;124(21):abstract 443.
4. Hankins JS, Anderson S, Smeltzer MP, et al. A
and characteristics of patients experiencing
recurrent readmissions within children’s hospitals.
JAMA. 2011;305(7):682-690.
5. Berry JG, Hall DE, Kuo DZ, et al. Hospital utilization
hospitals by diagnosis, 2010. Agency for Healthcare
Research and Quality website. http://www
.hcup-us.ahrq.gov/reports/statbriefs/sb153.pdf.
Published April 2013. Accessed December 12,
2014.
6. Elixhauser A, Steiner C. Readmissions to U.S.
RG, Yan K, Brousseau DC. Outpatient follow-up and
rehospitalizations for sickle cell disease patients.
Pediatr Blood Cancer. 2012;58(3):406-409.
7. Leschke J, Panepinto JA, Nimmer M, Hoffmann
intervention and prospective implementation of
standardized sickle cell pain admission orders
reduces 30-day readmission rate. Pediatr Blood
Cancer. 2009;53(3):401-405.
8. Frei-Jones MJ, Field JJ, DeBaun MR. Multi-modal
“Our efforts were directed at consistent
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