Care Plans to Reduce Healthcare Utilization in Sickle Cell Disease

Published on: 
Evidence-Based Oncology, The American Society of Hematology Annual Meeting, 2014, Volume 21, Issue SP1

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


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


• 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


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.


The program was definitely successful,

References Updated

January 16, 2014. Accessed December 10, 2014.

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Accessed December 11, 2014.

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medical home model with overlap of pediatric and

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Published April 2013. Accessed December 12,


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“Our efforts were directed at consistent