Program For All-Inclusive Care For Children
Children’s Medical Service Network
Partners in Care : Together for Kids
February 2009 - Evaluation Year 3
Annual Evaluation for 2008
Institute for
CHILD HEALTH POLICY
U N I V E R S I T Y O F F L O R I DA
Prepared By
Caprice Knapp, PhD
Assistant Research Scientist
Epidemiology and Health Policy Research
Institute for Child Health Policy
University of Florida
Vanessa Madden, BSc
Research Program Coordinator
Institute for Child Health Policy
University of Florida
Hu Wang, MS
Research Program Coordinator
Institute for Child Health Policy
University of Florida
Elizabeth Shenkman, PhD
Director,
Institute for Child Health Policy
Professor
Epidemiology and Health Policy Research
University of Florida
Table of Contents
Executive Summary . . . . . . . . . . .
Section I. Enrollment Trends. . . . . . . .
Introduction . . . . . . . . . .
Enrollment Trends . . . . . . .
Disenrollment Trends . . . . . .
Summary and Recommendations
Section II. Parent Satisfaction Survey . . . .
Introduction . . . . . . . . . .
Survey Results . . . . . . . . .
Summary and Recommendations
Section III. Administrator Survey . . . . .
Introduction . . . . . . . . . .
Survey Results . . . . . . . . .
Summary and Recommendations
Section IV. Nurse Care Coordinator Survey .
Introduction . . . . . . . . . .
Survey Results . . . . . . . . .
Summary and Recommendations
Section V. Claims and Encounter Data . . .
Introduction . . . . . . . . . .
Cost Patterns . . . . . . . . . .
Summary and Recommendations
Endnotes . . . . . . . . . . . . . . . .
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. 6
. 12
. 13
. 15
. 17
. 18
. 19
. 20
. 22
. 28
. 30
. 31
. 32
. 35
. 36
. 37
. 40
. 48
. 49
. 50
. 50
. 52
. 53
List of Figures
Figure 1. Quarterly New Enrollments for Eight Sites, January 2006 to December 2008 . . . . . . . .15
Figure 2. Active Enrollment Trends for Eight Sites, January 2006 to December 2008 . . . . . . . . .15
Figure 3. Active Caseload by Site, December 2008 . . . . . . . . . . . . . . . . . . . . . . . .16
Figure 4. Active Caseload By Site, June 2007 to December 2008 . . . . . . . . . . . . . . . . . .16
Figure 5. Disenrollment Trends for Eight Sites, January 2006 to December 2008 . . . . . . . . . .17
Figure 6. Ratio of New Enrollees to Disenrollees for Five Sites, by Year . . . . . . . . . . . . . . .17
Figure 7. How Respondents Learned About the Program . . . . . . . . . . . . . . . . . . . . .23
Figure 8. Time Frame of Receipt of a PIC:TFK Service After Being Invited to Participate . . . . . . .23
Figure 9. Very Satisfied to Satisfied with PIC:TFK Benefits, By Site . . . . . . . . . . . . . . . . .23
Figure 10. Parent Report of Overall Quality of Care, By Site . . . . . . . . . . . . . . . . . . . .24
Figure 11. Very Satisfied to Satisfied with PIC:TFK Services . . . . . . . . . . . . . . . . . . . .25
Figure 12. Satisfaction with the Frequency of PIC:TFK Services . . . . . . . . . . . . . . . . . .25
Figure 13. Children’s Unmet Demand for PIC:TFK Services . . . . . . . . . . . . . . . . . . . . .25
Figure 14. Very Satisfied to Satisfied with PIC:TFK Services Received by Family Members . . . . . .26
Figure 15. Family Members’ Unmet Demand for PIC:TFK Services . . . . . . . . . . . . . . . . .26
Figure 16. Respondents’ Scores on the Five Domains of the Decisional Conflict Scale. . . . . . . . .27
Table of Contents
Figure 17. Number of Nurse Care Coordinators in Florida, by CMSN Area Office . . . . . . . . . . .38
FIgure 18. Average Caseload of CMSN Children, by CMSN Area Office . . . . . . . . . . . . . . .41
Figure 19. Time Spent Coordinating Care after a PIC:TFK Referral . . . . . . . . . . . . . . . . .41
Figure 20. NCC Agreement with “The PIC:TFK program operates in my area,”
by PIC:TFK Program Participation . . . . . . . . . . . . . . . . . . . . . . . . . . .42
Figure 21. NCC Agreement with “A child must be in CMSN to be eligible for the PIC:TFK program,”
by PIC:TFK Program Participation . . . . . . . . . . . . . . . . . . . . . . . . . . .42
Figure 22. NCC Agreement with “To be eligible for the PIC:TFK program, a child’s primary
care physician must certify that the child has a life limiting illness,”
by PIC:TFK Program Participation . . . . . . . . . . . . . . . . . . . . . . . . . . .42
Figure 23. NCC Responses to ”Parents of children enrolled in PIC:TFK
can receive PIC:TFK services,” by PIC:TFK Program Participation . . . . . . . . . . . . .43
Figure 24. NCC Responses to “Siblings of children with life-limiting illnesses cannot
receive PIC:TFK services,” by PIC:TFK Program Participation . . . . . . . . . . . . . . .43
Figure 25. NCC Responses to “Children enrolled in the PIC:TFK program can receive
services while hospitalized,” by PIC:TFK Program Participation . . . . . . . . . . . . .43
Figure 26. NCC Agreement with “I think there is a way to reimburse providers in my
area for pediatric palliative care prior to the end stage of illness,”
by PIC:TFK Program Participation . . . . . . . . . . . . . . . . . . . . . . . . . . .44
Figure 27. NCC Agreement with “I am not familiar with hospice services in this community,”
by PIC:TFK Program Participation . . . . . . . . . . . . . . . . . . . . . . . . . . .44
Figure 28. NCC Agreement with “I am uncertain of the types of service covered under the
hospice benefit,” by PIC:TFK Program Participation . . . . . . . . . . . . . . . . . . .44
Figure 29. NCC Agreement with “I think that it is difficult to know when, in the course of illness,
a child should be referred to palliative care,” by PIC:TFK Program Participation . . . . . .45
Figure 30. NCC Agreement with “I do not think it is appropriate to approach families whose
children have just been diagnosed with a life-limiting illness to talk about palliative care,”
by PIC:TFK Program Participation . . . . . . . . . . . . . . . . . . . . . . . . . . .45
Figure 31. NCC Agreement with “I do not think it is appropriate to approach families whose children
have a life-limiting illness and are in the mid stage of illness to talk about palliative care,”
by PIC:TFK Program Participation . . . . . . . . . . . . . . . . . . . . . . . . . . .45
Figure 32. Percentage of Correct Responses to the Knowledge Quiz, by PIC:TFK Program Participation 46
Figure 33. Percentage of Correct Responses to the PCQN, by PIC:TFK Program Participation . . . . .46
Table of Contents
List of Tables
Table 1. Representativeness of Survey Sample . . . . . . . . . . . . . . . . . . . . . . . . .22
Table 2. Percentage of Parents who Report their Children Have Received Services, By Site . . . . . .24
Table 3. Percentage of Parents who Report that Family Members Received Services, By Site . . . . .26
Table 4. Affirmative Responses to the Inclusion of Additional PIC:TFK Services . . . . . . . . . . .26
Table 5. Ranking of Usefulness of PIC:TFK Protocols, By CMSN Site . . . . . . . . . . . . . . . .32
Table 6. Ranking of Usefulness of PIC:TFK Protocols, By Hospice Site . . . . . . . . . . . . . . .32
Table 7. Disenrollment Criteria- Loss of Eligibility . . . . . . . . . . . . . . . . . . . . . . . .33
Table 8. Disenrollment Criteria- Reference Guide . . . . . . . . . . . . . . . . . . . . . . . .33
Table 9. Disenrollment Criteria- Reasons Other than Loss of Eligibility. . . . . . . . . . . . . . .34
Table 10. Demographic Profile of Respondents, by PIC:TFK Site Participation . . . . . . . . . . . .40
Table 11. Familiarity with Eligibility Criteria for the PIC:TFK Program . . . . . . . . . . . . . . . .41
Table 12. Familiarity with PIC:TFK Service Restrictions . . . . . . . . . . . . . . . . . . . . . .42
Table 13. Attitudes towards Hospice Care . . . . . . . . . . . . . . . . . . . . . . . . . . . .43
Table 14. Referral to Palliative Care Services, by Diagnosis. . . . . . . . . . . . . . . . . . . . .47
Table 15. Timing of Referral to Palliative Care Services, by Diagnosis and PIC:TFK Program Participation . 47
Table 16. Cost by Service Type, July 2007 to June 2008 . . . . . . . . . . . . . . . . . . . . 51
Table 17. Average Yearly Costs Pre and Post Implementation, by Service Category . . . . . . . . 51
Partners in Care Together for Kids | 2008 - 2009
Executive Summary
Background and Purpose
In July 2005, Florida’s Partners in
Care: Together for Kids (PIC:TFK)
program for children with lifelimiting illnesses began1. Prior to
the establishment of the PIC:TFK
program, children with life-limiting
illnesses received hospice care
under the Medicare model.
Designed for the elderly, the
Medicare model of hospice care
requires a patient to be in the last
six months of life to receive hospice
services and the patient must
forego any curative treatments.
Because the life span of a child
with a life-limiting illness is difficult
to predict and the specific factors
associated with childhood illnesses
may require treatment up to the
time of death, the Medicare model
of hospice care is inappropriate for
a pediatric population. PIC:TFK
is the first publicly-financed health
program for children in the nation
to utilize a pediatric palliative care
model which integrates palliative
with curative or life-prolonging
therapies.
PIC:TFK operates under the
authority of the Children’s Medical
Services Network (CMSN). The
CMSN is Florida’s Title V program
for Children with Special Health
Care Needs (CSHCN). Children
must be clinically and financially
eligible for the CMSN to enroll in
PIC:TFK. The PIC:TFK program
is based on the Children’s Hospice
International Program for AllInclusive Care for Children and
their Families model of pediatric
palliative care, which strives to
provide a “continuum of care for
children and families from the time
that a child is diagnosed with a lifethreatening condition, with hope for
a cure, through the bereavement
process if cure is not attained”2.
pg. 6
As such, children enrolled in the
program represent children at all
stages of their disease trajectories.
The PIC:TFK program was
authorized to operate in eight
sites3 across the state: Gainesville,
Ft. Myers, Jacksonville, Miami,
Pensacola, Sarasota, St.
Petersburg, and West Palm Beach.
As of January 2009, the program
operates in six sites: Gainesville,
Ft. Myers, Jacksonville, Pensacola,
Sarasota, and St. Petersburg 4.
The following are included as
reimbursable PIC:TFK program
services: pain and symptom
consultation, specialized nursing,
specialized personal care, respite
care, support counseling for
children and their families, and
expressive therapies for children
and their siblings. Bereavement
counseling is also provided, but is a
non reimbursable service.
The federal Centers for Medicare
and Medicaid Services (CMS)
approved the PIC:TFK program as
a 1915(b) Medicaid waiver program
in 2005. As a result, the State was
charged under federal guidelines
with conducting an Independent
Assessment (IA) of the PIC:TFK
program. The Institute for Child
Health Policy at the University of
Florida (the Institute) is conducting
the assessment.
The purposes of this
report are to:
• Describe the characteristics of
children enrolled in the program
from January 2006 to December
2008,
• Describe the results from the
parent satisfaction and quality of
health care survey,
At a Glance
PIC:TFK is the first
publicly financed
pediatric palliative
care program in
the U.S. to provide
supportive care for
children and their
families from the
point of diagnosis
onward.
• Describe the findings from
the CMSN and hospice
administrative surveys and site
visits,
• Describe the results from
a pediatric palliative care
survey with CMSN Nurse Care
Coordinators (NCCs), and
• Describe the PIC:TFK cost
patterns.
Data Sources
Five data sources are used in this
report. The aims of this report are
presented by section as described
below.
Section I- Enrollment Trends
This section of the report
describes the characteristics of
children enrolled in the program
from January 2006 to December
2008. Program enrollments and
disenrollments were tracked over
Partners in Care Together for Kids | 2008 - 2009
time using monthly enrollment data
submitted by each PIC:TFK site to
the Institute. Regional differences
in enrollment patterns are explored.
Section II- Parent
Satisfaction Survey
This section of the report
describes the results from a
parent satisfaction and quality
of health care survey conducted
over the telephone. Survey data
were collected for parents whose
children are enrolled in PIC:TFK
and for parents whose children
disenrolled from the program in
the three months prior. Parents
of recent enrollees are asked
about their experiences with the
enrollment procedures, and parents
of disenrollees are asked for their
reasons for leaving the program.
Section III- Administrator Survey
This section of the report describes
the findings from administrative
surveys with CMSN and hospice
staff. Responses were collected
by email, and then discussed
during scheduled site visits. The
main focus of the site visits is
to establish the reasons why
children are disenrolling from the
program, to establish standardized
disenrollment categories, and
to train the CMSN nurses about
submitting the monthly enrollment
data in a new electronic database.
Section IV- Nurse Care
Coordinator Survey
This section of the report describes
the results from a pediatric
palliative care survey with CMSN
NCCs from both PIC:TFK sites
and non PIC:TFK sites. CMSN
Regional Nursing Directors
distributed surveys to the NCCs
who completed either a hardcopy
or online survey. Survey questions
test the NCCs’ knowledge of the
PIC:TFK program, and their general
attitudes towards, and knowledge
of, palliative care services. The
survey aims to determine any gaps
in the NCCs’ knowledge base,
which will be useful information
for developing or refining pediatric
palliative care training modules in
the future.
Section V- Claims and
Encounter Data
This section of the report describes
the PIC:TFK cost patterns for
Medicaid enrollees, and the issues
associated with calculating reliable
cost estimates for this population.
Claims and encounter data were
analyzed for state fiscal year 20072008.
Summary and
Recommendations
The PIC:TFK program is a complex
and novel program in its early
phases of operation. Much has
been accomplished as evidenced
by the establishment of sites
with multiple program partners,
enrollment of over 600 children,
standardization of program policies
and procedures, and 89% of
parental reports of satisfaction
with the program. However, due
to the newness and the complexity
of the program, there are several
areas necessary for improvement
and the ongoing success of this
waiver program. Some of the areas
necessary for improvement are
within the control of the PIC:TFK
Program Director, however some
areas require system level changes.
In recognition of this fact, tiered
recommendations are in the
Executive Summary whereby Tier 1
recommendations reflect those that
are systemic and Tier 2 represents
those where there is more direct
control to implement changes.
At A Glance
Five data
sources are
used in this
report:
• Enrollment
data
• Parental
satisfaction
survey
• Administrator
survey
• Nurse Care
Coordinator
survey
• Claims and
encounter data
pg. 7
Partners in Care Together for Kids | 2008 - 2009
A summary of the key findings and
recommendations for this study
are presented below by section.
A complete list of findings and
recommendations can be found in
the corresponding sections of the
report.
Section I- Enrollment Trends
This section of the report examines
trends in program enrollments and
disenrollments to identify areas
where recruitment and retention
efforts need strengthening.
Regional differences in enrollment
trends are explored, with the goal
of identifying those sites with the
lowest and the highest enrollment
numbers. The key findings are as
follows:
•
•
•
•
The composition of the PIC:TFK
program changed markedly
during 2008, with two hospices
exiting the program and one
hospice rejoining the program.
Overall, there are one-third
fewer new enrollments in
2008 as compared with 2007.
Adjusting for those sites who
no longer participate in the
program, the ratio of new
enrollees to disenrollees in 2008
is 1.2:1.
Active enrollees fill
approximately one-quarter
of the 940 program slots in
December 2008. The largest
active caseload is in Ft. Myers,
followed by Jacksonville and St.
Petersburg.
Across sites, the active caseload
remains relatively constant over
a one-year period. Between
December 2007 and December
2008, four sites report an
pg. 8
increase in their active caseload
of between two to nine children
and one site reports that their
active caseload has decreased
by nine children.
The Institute makes the following
Tier 2 recommendations (no Tier 1
recommendations are made for this
section):
• CMSN should investigate
differences in capacity across
sites. For example, one site
serves 88 children while the
active caseload at the other
sites is between 20 and 57
children which could be due to
capacity constraints.
• As the program expands to
include other sites in Florida,
CMSN headquarters should
consider developing an online
enrollment database which
interfaces with the Child
Assessment and Plan System
(CAP) and other existing CMSN
databases. By developing and
maintaining a standardized
database, CMSN staff will have
access to the latest enrollment
information and IT support
from CMSN headquarters, and
the PIC:TFK Program Director
will have direct access to the
enrollment information.
Section II- Parent
Satisfaction Survey
This section of the report describes
parental satisfaction with the
frequency and quality of PIC:TFK
services received by themselves,
their children, and by other family
members. The survey asked
parents about their satisfaction
with the scope of the PIC:TFK
services, or if they have unmet
needs. Parents of children recently
joining the program are asked about
their satisfaction with enrollment
procedures, and parents of children
recently leaving the program are
asked the reason for leaving the
program. The key findings are as
follows:
• Approximately two-thirds
of parents of new enrollees
indicate that they first learned
about the program from their
children’s NCC and 35% do not
recall receiving a list or being
told about PIC:TFK services. Of
the parents who did not receive
information, one-half are located
at one PIC:TFK site.
• The majority (89%) of parents
are very satisfied to satisfied
with the program benefits, and
the overall satisfaction rating has
increased 6% from 2007-2008.
• Seventy percent of parents
report that the quality of care
that their children receive in
PIC:TFK is excellent or very
good. The quality of care rating
has increased 5% compared
with the previous reporting
period.
• Ninety-three percent to100%
of parents are satisfied with
the different services received
by their children (support
counseling, personal care,
nursing care, music therapy,
art therapy, and play therapy).
Eighty-four percent to 94% of
parents are satisfied with the
frequency of each service.
• Ninety-four percent to 100% of
parents are satisfied with the
services received by themselves
or their other family members
(support counseling, respite,
Partners in Care Together for Kids | 2008 - 2009
music therapy, art therapy,
play therapy, and volunteer
services). Thirty-one percent of
respondents report that no one
other than their ill child received
any PIC:TFK services.
• Not all families who would like
to receive certain services are
receiving them. For example,
36% of parents would like for
their children to start receiving
support counseling and 29%
of parents would like for
themselves or another family
member to start receiving
support counseling. The
greatest unmet need for children
is for art, music and play
therapies. The greatest unmet
need for family members is art
therapy for siblings, followed by
in-home respite services.
• One-quarter of parents report
that they would like to see
additional services included in
the PIC:TFK benefits package.
The greatest reported demand is
for the continuation of PIC:TFK
services to the parent or family
members while the ill child is
hospitalized.
example, the greatest unmet
need is for expressive therapies,
however this is likely due to the
lack of registered expressive
therapists in Florida.
The Institute makes the following
Tier 2 recommendations:
•
•
The Institute makes the following
Tier 1 recommendations:
• The PIC:TFK Steering
Committee should investigate
options for increasing the
response rate among parents of
Black children.
• The PIC:TFK Steering
Committee should consider
investigating the reasons why
some families who would like
to receive specific PIC:TFK
services are currently not
receiving those services. For
•
The Institute recommends that
CMSN headquarters consider
developing an online enrollment
database which interfaces with
CAP and other existing CMSN
databases. The Institute also
recommends that hospice staff
have restricted access to this
online database and the ability
to update contact information
in real time. Giving hospice
staff access to the enrollment
database will also aid joint care
planning efforts.
Parents of all disenrollees
should be sent a disenrollment
letter as a standard practice
and this letter should be printed
in English and Spanish. This
will ensure that all parents are
aware of the reason for their
children’s disenrollment and will
give parents an opportunity to
contact the hospice for further
information.
The Institute recommends
that survey questions should
be added to determine why
parents have unmet needs
for services that are offered
through the PIC:TFK program.
These reasons could be that the
service was not a part of their
care plan, they were not told
about the service, they used the
maximum number of allowable
service units, etc. It is important
to determine why unmet needs
exist.
Section III- Administrator Survey
Administrative surveys and site
visits are important components
of the program evaluation, as
they give valuable insights into
whether the program is operating as
intended. Findings from previous
administrative surveys have
described the sites’ operational
practices, standards of care, and
procedures, as well as issues
arising during the implementation
phase of the PIC:TFK program5.
The main focus of the site visits,
and this section of the report,
is to investigate the reasons
why children disenroll from the
program. The key findings from
the administrative surveys and site
visits are as follows:
•
The sites report operational
issues with regards to
reimbursement and staffing.
Many of the sites report that
the reimbursement rates
and the funding allocated to
administrative costs are too low.
•
The CMSN sites report that the
standardized forms are the most
useful protocol. The statewide
meeting ranks highly for both
CMSN and hospice staff, and
the technical assistance calls
are viewed universally as the
least useful.
•
One-half of children leave
the program because they
no longer meet the eligibility
criteria. The most common
reason for disenrollment is
relocation (17%), followed by
the loss of Medicaid coverage
or CMSN coverage (16%),
death (12%), relocation to
full hospice or a long term
care facility (4%) and non recertification by the PCP (1%).
pg. 9
Partners in Care Together for Kids | 2008 - 2009
•
One-half of children disenroll
from the program for reasons
other than loss of eligibility.
The most reported reason for
program disenrollment is the
families’ lack of interest, or
‘non responsiveness’ (21%),
followed by families not using
services (10%) or the hospice
determining that services are
no longer required (10%). It is
important to note that CMSN
staff report that only one family
is dissatisfied with PIC:TFK
services.
The Institute makes the following
Tier 1 recommendation:
•
The Institute recommends
that the PIC:TFK Steering
Committee internally review
reimbursement fees and
hospice staffing issues.
However, setting reimbursement
rates is beyond the authority
of the PIC:TFK Steering
Committee.
The Institute makes the following
Tier 2 recommendations:
•
•
A special study to investigate
the indirect costs associated
with providing services to
PIC:TFK participants should be
considered as many hospices
continue to question the
adequacy of reimbursement.
The study could enumerate
the administrative costs of
providing services (travel
costs, training, care planning,
care coordination, staffing)
which would also be helpful
for establishing staffing
patterns and capacity limits for
hospices.
The Institute recommends that
the PIC:TFK Program Director
pg. 10
shares the disenrollment
findings with all new sites
entering the PIC:TFK program.
It is important for hospices to
be aware that one-quarter of
families entering the program
are either not contactable or
are unresponsive. Hospices
can then factor this indirect
cost information into their
break-even cost estimates
and adjust staffing rosters
accordingly.
Section IV- Nurse Care
Coordinator Survey
The primary persons responsible
for initiating referrals to the
PIC:TFK program are the CMSN
NCCs. As such, it is important to
determine the NCCs’ knowledge
of, and attitudes towards, pediatric
palliative care. This section
describes the first palliative care
survey undertaken with CMSN
NCCs in Florida. The survey
compares responses from the
PIC:TFK sites and non PIC:TFK
sites. The key findings are as
follows:
•
Fifteen percent of respondents
were previously employed by
hospice and 14% report ever
completing a formal palliative
care training course, such
as the End-of-Life Nursing
Education Consortium (ELNEC)
course.
•
The average caseload for a
NCC is 181 children, however
the average caseload varies
significantly across the state.
•
PIC:TFK respondents are
significantly more likely than
their counterparts at non
PIC:TFK sites to know whether
the PIC:TFK program operates
in their area, to correctly identify
that CMSN enrollment and PCP
certification are required for
admission to the program, and
that both siblings and parents
may also receive PIC:TFK
services.
•
One in twenty NCCs can
correctly identify that enrolled
children are not eligible to
continue receiving PIC:TFK
services while hospitalized,
as this would constitute
a duplication of Medicaid
reimbursable services.
•
NCCs correctly answer 63% of
questions on a knowledge quiz
about hospice policies and the
mean percentage of correct
answers on the Palliative Care
Quiz for Nurses is 54%.
•
Respondents from the PIC:TFK
sites are more likely than their
counterparts at non PIC:TFK
sites to refer children to
palliative care services before
the end of life for 12 diagnoses
eligible for the program.
The Institute makes the following
Tier 2 recommendations (no Tier 1
recommendations are made for this
section):
•
Although the PIC:TFK NCCs
scored higher than the non
PIC:TFK NCCs, there were
several gaps in knowledge
that could be addressed in
future training such as the
fact that there is no allowable
reimbursement when children
are hospitalized.
•
Very few NCCs have completed
a formal palliative care training
program and the PIC:TFK
Steering Committee should
consider if this requirement, as
Partners in Care Together for Kids | 2008 - 2009
described in the implementation
guidelines, is needed given the
differences in scores between
the PIC:TFK and non PIC:TFK
sites.
•
Once new sites are approved
and begin enrolling children, it
is recommended that the NCCs
in those sites complete the
same survey so that a pre, post
analysis can be performed.
Section V- Claims and
Encounter Data
The PIC:TFK program is the first
publicly-funded program to provide
supportive care for children and
families from the point of diagnosis
onwards. Costs analyses are
important to establish fiscal
sustainability and impact. The key
findings are as follows:
•
•
Support counseling is the
most used service, which
corroborates results from the
parent survey, and inpatient
respite is used the least.
The results show that average
yearly inpatient costs fell
after enrollment in PIC:TFK
and emergency department,
pharmacy, and outpatient
costs increased. However,
the cumulative effect was a
decrease in total costs of about
$10,0006.
The Institute makes the following
Tier 2 recommendations (no Tier 1
recommendations are made for this
section):
•
The Institute recommends that
the reimbursement regulations
associated with inpatient
respite be clarified by AHCA.
Utilization of this service may
increase if the sites were given
more definitive information.
•
Costs should continue to be
monitored on a quarterly basis
by the PIC:TFK Program
Director, AHCA, and CMSN.
•
Costs for children eligible for
Title XXI should be collected
and analyzed.
At a Glance
Two hospices
exited and one
hospice rejoined
the PIC:TFK
program in 2008.
The six sites that
provide PIC:TFK
services in
January 2009
are:
•Gainesville
•Ft. Myers
•Jacksonville
•Pensacola
•Sarasota
•St. Petersburg
pg. 11
Partners in Care Together for Kids | 2008 - 2009
Section 1.
Enrollment Trends
pg. 12
Partners in Care Together for Kids | 2008 - 2009
Introduction
An important aspect of program
evaluation is the ability to track
program enrollment over time.
Furthermore, examining regional
differences in enrollment trends
allows program planners to offer
additional support to sites with low
enrollment numbers and to look
for best practices at the sites with
the highest enrollment numbers. It
is equally important to determine
the reasons that children disenroll
from the program. Establishing the
specific reasons for disenrollment
gives program planners clues about
gaps in care, whether these may be
related to local or statewide issues,
and to develop plans to address
disenrollments if necessary.
Background
Children must meet financial and
medical screening criteria to be
eligible for enrollment in CMSN and
PIC:TFK. A further clinical eligibility
requirement for PIC:TFK mandates
that a child be diagnosed with a
potentially life-limiting condition.
Children must also meet the CMSN
financial eligibility requirements
associated with Title XIX Medicaid
(for children under 21) or Title XXI
Florida KidCare (for children under
19). The enrollment of Safety-Net
eligible children in PIC:TFK (whose
families have higher incomes than
Title XIX or Title XXI families) is
optional and based on funding
availability.
As of January 2009, eligible children
receive PIC:TFK services at six
sites across the state: Gainesville,
Ft. Myers, Jacksonville, Pensacola,
Sarasota, and St. Petersburg. At
each site, CMSN staff collaborates
with a local hospice organization
with demonstrated expertise in
caring for children. Participating
local hospices are: Hospice of
the Nature Coast, Hope Hospice
and Community Care Service,
Community Hospice of Northeast
Florida, Covenant Hospice, Tidewell
Hospice, and Hospice of the Florida
Suncoast. The PIC:TFK program
is authorized, but is not currently
operating, in two additional sites7:
Miami and West Palm Beach.
CMSN NCCs are charged with
identifying children that might be
potentially eligible for PIC:TFK.
The primary care physician for a
potentially eligible child is contacted
for a referral to the PIC:TFK
program, and if given, the family
is then approached by the CMSN
NCC about enrollment. Once a
family agrees to enroll, hospice
staff performs an initial intake
assessment with the family and a
plan of care is developed. Parents
and the primary care physician also
receive a copy of the care plan.
Hospice and CMSN staff work
together to ensure that the care
plan is appropriate and is being
followed. After a plan of care is
agreed upon, the hospice provides
the palliative care services as
agreed upon in the care plan.
PIC:TFK Program Director, however
the Institute subsumed the role of
processing the monthly enrollment
file during 2007-2008. Data was
initially collected using an EXCEL
template, which included data on
both enrollees and those children
who were potentially eligible for
PIC:TFK but not enrolled8. The
EXCEL template was problematic
for two reasons. First, the sites
reported that the template was not
user-friendly. Second, the Institute
observed that, despite training,
there was a substantial amount of
missing data, incomplete data, and
incorrectly coded data9.
In June 2008, the Technical
Advisory Panel advised that a
new system be developed to
capture and report the enrollment
data. In response, the Institute
developed an ACCESS database
in consultation with all the PIC:TFK
sites10. All sites received face-toface training before the database
became operational in September
2008.
Data Source
Since November 2005, the sites
have collected the following key
data elements on enrollees: child’s
name, age, race, gender, funding
source (Title XIX, Title XXI, or
Safety-Net), contact information,
diagnoses, stage of illness (newly
diagnosed, mid stage, end stage),
admission date, disenrollment
date, and reason for disenrollment.
Initially this information was
submitted on a monthly basis to the
pg. 13
Partners in Care Together for Kids | 2008 - 2009
The advantages of the ACCESS database are:
1. Software availability. The ACCESS program is part of the standard Microsoft Office package, which is
available to all CMSN NCCs.
2. User-friendly interface. Each child’s details are displayed on a single page and data is organized into colorcoded sections. Only essential information is recorded.
3. Quick results. At the touch of a button, users can search records or print lists of children in each stage of the
enrollment process.
4. Quality control. The database is designed to prevent simple data entry errors. For example, users receive
an error message if they type an incomplete telephone number.
5. Simpler coding. Users may select codes from drop-down lists that standardize the collected information and
prevent coding errors.
pg. 14
Partners in Care Together for Kids | 2008 - 2009
Enrollment Trends
Data collected in the ACCESS
database are used in this section
to describe enrollment trends.
Specifically, three measures are
used to assess the program’s
growth and sustainability:
100
90
80
New Enrollments
•
Figure 1. Quarterly New Enrollments for Eight Sites,
January 2006 to December 2008
Number of new children
entering the program each
month (new enrollees),
70
60
50
40
30
20
•
Number of children receiving
PIC:TFK services each month
(active enrollees), and
10
0
Q1
2006
Q2
2006
Q3
2006
Q4
2006
Q1
2007
Q2
2007
Q3
2007
Q4
2007
Q1
2008
Q2
2008
Q3
2008
Q4
2008
Quarter
•
Number of children leaving
the program each month
(disenrollees).
approximately one-third fewer new
enrollees in 2008 as compared with
2007.
259 out of 615, remain enrolled
as of December 2008. Figure 2
shows both the total caseload of
children served by the sites each
month (cumulative active enrollments
denoted by a line) and the new
enrollments each month (monthly
enrollments denoted by blue bars).
The total active caseload increased
by 155 children during calendar year
2007, but decreased by 41 children
To be considered PIC:TFK
enrollees, children must first
receive an initial assessment from
Active Enrollments
hospice. Children are not counted
Cumulative enrollment in the
as PIC:TFK enrollees if an initial
PIC:TFK program is 615 children.
appointment was scheduled but
Of those 615 children who ever
not completed. All enrollment
received PIC:TFK services, 42%, or
figures presented below represent
children who received an
initial assessment from
Figure 2. Active Enrollment Trends for Eight Sites, January 2006 to
hospice11.
December 2008
350
New Enrollments
300
Active Enrollments
Figure 1 shows a steady
increase in the number
of new enrollees during
calendar years 2006 and
2007, reaching a peak of
86 new enrollments during
the third quarter of 2007.
The second largest peaks
in enrollment are seen
in the second quarter of
2007 and the third quarter
of 2008. During calendar
years 2006, 2007, and 2008,
the program saw 124, 256,
and 161 new enrollments,
respectively. There are
250
Gainesville
rejoined program
Monthly Enrollments
Cumulative Enrollments
Sarasota joined
program
Potential List
Implemented
Miami
left program
Potential List
Stopped
West Palm Beach
left program
200
150
Gainesville
left program
100
50
0
J F M A M J J A S O N D J F M A M J J A S O N D J F M A M J J A S O N D
06 06 06 06 06 06 06 06 06 06 06 06 07 07 07 07 07 07 07 07 07 07 07 07 08 08 08 08 08 08 08 08 08 08 08 08
Month
pg. 15
Partners in Care Together for Kids | 2008 - 2009
during calendar year 2008. During
2008 both the Miami program and
the West Palm Beach program
stopped providing PIC:TFK
services.
Of the active enrollees, 3% had
disenrolled from the program at
some point previously, and then reenrolled. Most of the re-enrollees
were subsequently disenrolled from
the program because they were
not using services, or were not
contactable. The average time that
these children were disenrolled is
243 days.
Figure 3 shows a snapshot of the
active caseload for each site in
December 2008. The Ft. Myers
site has the largest active caseload,
followed by Jacksonville and St.
Petersburg. Active enrollees fill
approximately one-quarter of the
940 funded program slots as of
December 2008.
pg. 16
Figure 4. Active Caseload By Site, June 2007 to December 2008
100
91
90
Active Enrollees
In December 2008, the majority
of active enrollees are in midstage (84%), while 12% are
newly diagnosed12 and 4% are
end stage. Ninety-three percent
of active enrollees are Title XIX
eligible, 3% Title XXI, and 4%
are eligible through Safety-Net.
Fifty-four percent of enrollees
are male. Seventy percent of
enrollees are White, 25% are
Black, and 5% are Hispanic13.
Children are categorized by their
primary diagnosis and the most
common diagnoses are: congenital
anomaly, brain injury, cystic fibrosis,
respiratory disorder, cerebral
palsy, cardiovascular disorder,
convulsions, developmental
delay, muscular dystrophies,
immunodeficiency, and neoplasm.
More than 100 different primary
diagnoses are represented in
the PIC:TFK program, with many
children having multiple diagnoses.
Figure 3. Active Caseload by Site, December 2008
88
79
80
70
60
50
57
55
57
45
44
41
37
40
54
50 52 50
49
42
47
37 36
30
20
20
14 14
10
0
0
0
Ft. Myers
Jacksonville
June 2007
Pensacola
December 2007
Sarasota
June 2008
St. Petersburg
West Palm
Beach
December 2008
Looking at enrollment trends over time, Figure 4 shows that Ft. Myers has
almost doubled their caseload between June 2007 and December 2007,
and has sustained the largest active caseload between December 2007
and December 2008.
Partners in Care Together for Kids | 2008 - 2009
Disenrollment Trends
Data collected in the ACCESS
database are used in this section
to describe enrollment trends.
Since the PIC:TFK program began
in 2005, 356 children have been
disenrolled from the program.
Three sites left the program,
directly accounting for 24% of
the disenrollments. The reasons
for the other three-quarters of
disenrollments will be discussed in
further detail in Section Three.
Figure 6 shows the ratio of new
enrollees to disenrollees for five
sites: Ft. Myers, Jacksonville,
Pensacola, Sarasota, and St.
Petersburg. The figure does not
include three sites that ceased to
provide PIC:TFK services during
2006 to 2008. In calendar year
2006, equal numbers of children
joined and left the program. During
calendar years 2007 and 2008
there are more new enrollees
joining the program than there
are children disenrolling from the
program; however, the ratio of new
enrollees to disenrollees decreases
markedly from calendar year 2007
to calendar year 2008.
West Palm Beach
left program
400
Monthly Disenrollments
Cumulative Disenrollments
Disenrollments
350
300
Miami
left program
250
200
Gainesville
left program
150
100
50
0
J F M A M J J A S O N D J F M A M J J A S O N D J F M A M J J A S O N D
06 06 06 06 06 06 06 06 06 06 06 06 07 07 07 07 07 07 07 07 07 07 07 07 08 08 08 08 08 08 08 08 08 08 08 08
Month
Figure 6. Ratio of New Enrollees to Disenrollees for Five Sites, by Year
Ratio of New Enrolleess to
Disenrollees
Figure 5 shows the number of
children who left the program each
month (denoted by blue bars)
and the cumulative number of
disenrollments (denoted by a line)
for the eight sites. Cumulative
disenrollments have increased
steadily, increasing from 67
disenrollees by January 2007 to
356 disenrollees by December
2008. In 2008, there are 244 new
disenrollments. Two sites left the
program during 2008, directly
accounting for 27% of the new
disenrollments during 2008.
Figure 5. Disenrollment Trends for Eight Sites,
January 2006 to December 2008
5
4
3.5
3
2
1.2
1.0
1
0
2006
2007
2008
pg. 17
Partners in Care Together for Kids | 2008 - 2009
Summary and Recommendations
This section of the report examines
trends in program enrollments and
disenrollments to identify areas
where recruitment and retention
efforts need strengthening.
Regional differences in enrollment
trends are explored, with the goal
of identifying those sites with the
lowest and the highest enrollment
numbers.
The key findings are as follows:
• The composition of the PIC:TFK
program changed markedly
during 2008, with two hospices
(Miami and West Palm Beach)
exiting the program and one
hospice (Gainesville) rejoining
the program.
• Overall, there are one-third
fewer new enrollments in
2008 as compared with 2007.
Adjusting for the sites that no
longer serve children, the ratio of
new enrollees to disenrollees is
1.2:1 in 2008.
• Active enrollees fill
approximately one-quarter of
the 940 program slots as of
December 2008. The largest
active caseload is in Ft. Myers,
followed by Jacksonville and St.
Petersburg.
• Across sites, the active caseload
remains relatively constant over
a one-year period. Between
December 2007 and December
2008, four sites report an
increase in their active caseload
of between two to nine children
and one site reports that their
active caseload has decreased
by nine children.
pg. 18
The ability of the sites to recruit and
retain participants is crucial. The
active caseload of children has
remained constant at many of the
sites, indicating that the hospices
may not have the capacity to serve
more than a certain number of
children under the current model
of reimbursement. In light of the
findings, the Institute recommends
the following:
•
CMSN should continue to
address site specific barriers.
Also, CMSN should determine
what each hospice’s capacity
is to serve children in the
program.
•
As the program expands to
include other sites in Florida,
CMSN headquarters should
consider developing an online
enrollment database which
interfaces with the Child
Assessment and Plan System
(CAP) and other existing CMSN
databases. By developing and
maintaining a standardized
database, CMSN staff will have
access to the latest enrollment
information and IT support
from CMSN headquarters, and
the PIC:TFK Program Director
will have direct access to the
enrollment information.
At a Glance
PIC:TFK has
provided
supportive care
services to 615
children and their
families since
the program’s
inception.
42%, or 259 out
of 615, remain
enrolled as of
December 2008.
One-third of the
259 enrollees are
located at the Ft.
Myers site.
Partners in Care Together for Kids | 2008 - 2009
Section II.
Parent
Satisfaction Survey
pg. 19
Partners in Care Together for Kids | 2008 - 2009
Introduction
The PIC:TFK program aims to
deliver all inclusive care to children
and their families, by offering
supportive care services to the
entire family unit. As such, parental
satisfaction with the frequency
and quality of PIC:TFK services is
an important indicator of program
quality. An equally important goal
is to establish whether families are
satisfied with the scope of services,
or if they have unmet needs. The
2005-2006 National Survey of
Children with Special Health Care
Needs (CSHCN) shows that 22% of
CSHCN in Florida have an unmet
need for a specific health care
service14. Furthermore, only half
of the parents of CSHCN in Florida
report that they partner in decision
making at all levels and are
satisfied with the services that they
receive. As the primary caregiver
of a child with a life-limiting illness,
parents may experience decisional
conflict, making partnership with
their health care providers an
important aspect of care. Due to
the importance of these issues
the Institute added modules to
the parental survey to assess: 1)
Enrollment Procedures, 2) Overall
Satisfaction, 3) Satisfaction with
PIC:TFK Services, 4) Unmet
Needs, 5) Decisional Conflict, 6)
Disenrollment Reasons, and 7)
Demographics.
children disenrolled from PIC:TFK
during the previous three months.
Data Sources
The 2008-2009 parent survey
contains the following modules.
Parental Satisfaction Survey
Parental satisfaction data were
collected by a telephone survey.
Survey data were collected for
three groups of parents: 1) parents
whose children had been enrolled
in PIC:TFK less than three months,
2) parents whose children had been
enrolled in PIC:TFK more than
three months, and 3) parents whose
pg. 20
The Institute developed and tested
survey instruments to capture family
satisfaction within the program
in 2005-2006. During the 20062007 contract year, the Institute
conducted the first evaluation of
the PIC:TFK program. Survey
instruments were further refined,
and several new evaluation
components were added for
year two. Each year the Institute
receives advice from its Technical
Advisory Panel (TAP) about
how to best refine the parental
satisfaction survey. In June 2008
the consensus of the TAP was to
shorten the parental satisfaction
survey and ask more targeted
questions about unmet needs
and satisfaction with individual
PIC:TFK services. This information
is valuable for planning purposes,
both at the state level and the
individual site level. Previous
validation efforts have shown
the PedsQL to be an inadequate
survey instrument for children
with life-limiting illnesses. In the
absence of an appropriate quality
of life instrument for this patient
population, quality of life questions
were not asked in this survey. The
Institute continues to work with
national experts to try and identify
an appropriate tool to measure
quality of life.
Enrollment Procedures: This
module is administered to parents
of children enrolled in the program
for less than three months. Parents
are asked how they first learned
about the program, how they were
informed of the available services,
and how quickly their family started
receiving services.
At a Glance
140 parents
completed the
survey.
The parent
survey includes
the following
modules:
•Enrollment
procedures
•Satisfaction with
care
•Satisfaction
with PIC:TFK
services
•Unmet needs
•Decisional
conflict
•Disenrollment
reasons
Overall Satisfaction: Parents
are asked whether they would
recommend the PIC:TFK program,
whether they had ever filed a
complaint, and their general
satisfaction with the program and
their children’s overall quality of
care.
PIC:TFK Services: Parents are
asked to rate their satisfaction with
each PIC:TFK service received
Partners in Care Together for Kids | 2008 - 2009
by themselves, their children, or
by another family member. For
each service, parents are asked
whether they were satisfied with
the frequency of visits, and if not,
whether they would prefer more or
less frequent visits. If no one in the
family received a particular service,
parents are asked whether they
would like to start receiving that
service.
Unmet Needs: Parents are asked
whether they would like to see
additional services included in
the PIC:TFK program. Parents
are first asked if they would like
genetic counseling, as this was an
identified unmet need in the 20052006 National Survey of CSHCN15.
Two further questions center on
continuity of care during, and after,
their children’s hospitalization,
including: 1) the continuation
of PIC:TFK services to family
members during hospitalization,
and 2) services to help parents
care for their child at home after
discharge from the hospital.
Parents are also asked if they
would like short-term daycare for
their children in a location other
than their home and whether
they would like to participate in
community groups for children with
similar diagnoses.
Decisional Conflict Scale (DCS):
The DCS measures parents’
perceptions of uncertainty in
choosing treatment options for
their children, and is the preferred
instrument for measuring decisional
conflict in this population16. The
DCS consists of 16 items which
measure five domains relevant
to decision making: informed
feeling (3 items), values clarity
(3 items), support (3 items),
uncertainty (3 items), and effective
decision making (4 items). The
response category for each item
includes: “strongly disagree”,
“disagree”, “neither agree nor
disagree”, “agree”, and “strongly
agree”. The domain scores are
calculated by averaging scores
of items in a specific domain
and then transforming scores to
a 100 point scale. A score of 0
indicates low decisional conflict
and a score of 100 indicates high
decisional conflict. A score below
25 is associated with implementing
decisions; scores exceeding 37.5
are associated with decision
delay or feeling unsure about
making a decision17. A previous
study conducted by the Institute
confirmed that the DCS is a
valid and reliable tool to use with
PIC:TFK parents18.
Disenrollments: This module is
administered to parents of children
who were disenrolled from the
PIC:TFK program in the three
months prior to the survey. Parents
are asked to choose from one of
17 possible reasons for program
disenrollment.
Administrative Data
Administrative data is used
to compare the demographic
characteristics of children whose
parents responded to the survey
(responders) and those who did
not respond (non responders). The
following children’s characteristics
were compared to determine the
representativeness of the sample:
age, gender, race, insurance type,
stage of illness, and enrollment
status. Claims and encounter data
were used to categorize children
into one of six Clinical Risk Groups
(healthy, significant acute, minor
chronic condition, moderate chronic
condition, major chronic condition,
unassigned).
Analysis
Multivariate analyses were
conducted using STATA version
10.0. Multivariate regressions
were conducted to estimate the
relationships between quality of
care and satisfaction on factors
known to influence parent-reported
health care experiences, such as
race/ethnicity, parental education,
etc. Each regression uses a
logistic functional form where the
dependent variable takes on a
zero or one value. Satisfaction
scores are transformed into a
binary variable by collapsing into
two categories (1, 0). If a parent’s
satisfaction score is very satisfied
or satisfied, it is assigned a value
of one, and zero otherwise. Quality
of care scores are transformed into
a binary variable by collapsing into
two categories (1, 0). If a parent’s
reported quality of care is Excellent
to Very Good, it is assigned a value
of one, and zero otherwise. The
regressions control for child’s race/
ethnicity (White, Black, Hispanic,
and Other), parental educational
level (less than high school, high
school, some college, and college
graduate), child’s gender, child’s
age, child’s stage of illness (early,
mid, late), parent’s marital status
(married or other), household type
(single versus two parent), and
dummy variables for the PIC:TFK
sites.
A summary of the logistic
regression results is contained in
this section of the report. Complete
regression results are contained in
the Technical Appendix.
pg. 21
Partners in Care Together for Kids | 2008 - 2009
Survey Results
Three hundred and fifty-four
parents were eligible to participate
in the telephone survey. In
total, 140 parents completed the
survey. Compared with the 20072008 reporting period, there is
a 65% increase in the number
of completed surveys. The
overall response rate is 63% of
those parents with valid contact
information. More than one-third of
parents did not have valid contact
information.
Profile of Responders and
Non Responders
Table 1 compares the demographic
characteristics of respondents’
children with the characteristics of
non respondents’ children.
Bivariate analyses were
conducted to determine if there
were significant differences
between the responders and
non responders. Corresponding
p-values are presented in Table 1
and p-values of 0.05 or less denote
statistically significant differences.
Three factors were found to be
significantly different between the
responders and non responders:
children’s race/ethnicity, age,
and stage of illness. Parents of
children who are Black are less
likely to respond to the survey and
White parents are more likely to
respond. Respondents’ children
are older than the children of non
respondents. Parents of newly
diagnosed children and children
at the end of life are more likely
to participate in the survey than
parents of children in the mid stage
of their illness trajectory.
pg. 22
Demographics of
Parent Respondents
Of the 140 parent respondents
whose children are enrolled in
PIC:TFK, 91% of parents are
female. The average parental
age is 41.7 years with a standard
deviation of 11.0 years. Fifty-five
percent of parents are White,
13% Black, and 24% Hispanic,
and 8% other races. One-quarter
of PIC:TFK parents have a high
school diploma and 14% have
not graduated from high school.
Forty-seven percent are married,
26% are single or common law
married, 22% are divorced or
separated, and 5% are widowed.
Fifty-six percent of respondents
describe their household as a twoparent household. The majority
of PIC:TFK parents (79%) speak
English at home.
Table 1 shows that the majority of
respondents report that their child
has participated in the program for
more than three months (76%).
Eleven percent of surveyed parents
report that their child disenrolled
from the program in the past three
months while 13% note that their
child has been enrolled for less than
three months.
Enrollment Procedures
Questions in this section are
restricted to the parents of new
enrollees, meaning those whose
children have been enrolled for
three months or less, to reduce
recall bias. As a result, 18 parents
Table 1. Representativeness of Survey Sample
Responders
Child’s Enrollment Status
New Enrollees
18
13%
Active Enrollees
106
76%
Disenrollees
16
11%
Child’s Gender
Male
72
51%
Female
68
49%
Child’s Clinical Risk Group
Healthy
3
2%
Significant Acute
1
1%
Minor Chronic Condition
1
1%
Moderate Chronic Condition
29
22%
Major Chronic Condition
93
69%
Unassigned
7
5%
Child’s Age* Mean ( ± S.D.)
9.9 years (± 5.8)
Child’s Race/Ethnicity*
Black
23
20%
White
87
77%
Hispanic
3
3%
Child’s Insurance*
Medicaid
124
91%
Title XXI
7
5%
Safety Net
6
4%
Child’s Stage of Illness*
Less than six months after diagnosis
18
13%
Mid Stage
109
80%
End of Life
10
7%
PIC:TFK Site
Site 1
19
14%
Site 2
6
4%
Site 3
44
31%
Site 4
23
16%
Site 5
15
11%
Site 6
24
17%
Site 7
9
6%
*Demographic information is incomplete. S.D.= Standard Deviation
Non Responders
24
165
25
11%
77%
12%
110
103
52%
48%
2
1%
3
1%
2
1%
46
23%
147
72%
4
2%
8.7 years (± 5.4)
P Value
P=0.90
P=0.72
P=0.55
P=0.048
63
98
13
36%
56%
7%
P=0.003
200
5
5
95%
2%
2%
P=0.23
15
188
5
7%
90%
2%
P=0.01
31
11
63
29
37
33
10
15%
5%
29%
14%
17%
15%
5%
P=0.69
Partners in Care Together for Kids | 2008 - 2009
Figure 7. How Respondents Learned About the Program
Percentage
100%
80%
68%
60%
44%
39%
40%
20%
17%
17%
17%
Brochure
Friend or
Fam ily
Mem ber
Social
Service
Agency
11%
0%
Nurse Care
Coordinator
Provider
Hospital
Internet
It is important to note that
sometimes the timing of service
provision may be at the request
of the parents. Parents may have
scheduling issues that prevent them
from having services provided in a
short time period. The percentage
of parents who report that this time
period was due to personal choice
was 38%.
Overall Satisfaction
Figure 8. Time Frame of Receipt of a PIC:TFK Service
After Being Invited to Participate
100%
Percentage
80%
60%
50%
44%
40%
20%
6%
0%
Less than 2 w eeks
2-4 w eeks
More than 1 m onth
Figure 9. Very Satisfied to Satisfied with
PIC:TFK Benefits, By Site
Percentage
100%
89%
84%
88%
83%
Overall
Site 1
Site 3
Site 4
93%
96%
Site 5
Site 6
80%
60%
40%
20%
0%
Satisfaction w ith Benefits
are asked these questions. Sixtyeight percent of these parents
indicate that they first learned about
the program from their children’s
NCC (Figure 7). Respondents
often learned about the program
from more than one source.
Next, respondents are asked if they
were given a list or were told about
the PIC:TFK services available for
their children. Thirty-five percent
of parents do not recall receiving
a list or being told about PIC:TFK
services. Of the parents who did
not receive information, one-half
are located at one PIC:TFK site.
Figure 8 shows the amount of time
from when the child was invited
to participate in PIC:TFK to when
the child received services. Fortyfour percent of the parents report
having received a service within two
weeks.
This survey module asks specific
questions about the respondents’
overall satisfaction with the
PIC:TFK program. All parents
answered these questions. The
goal of this series of questions
is to identify strengths and
weaknesses in the program so
that improvements can be made
and best practices acknowledged.
However, to do so, programmatic
and site level feedback is needed.
In this report, results are presented
by program and site. A site key has
been provided to CMSN and AHCA
headquarters, but is not provided in
this report due to privacy concerns.
Table 1 shows the number of
survey respondents by site. It
should be noted that the stratified
results should be interpreted
with caution since the sample
sizes across the sites are small.
Furthermore, stratified responses
for Sites 2 and 7 will not be
presented in this report due to the
low number of survey respondents.
However, any overall percentages
reported include sites 2 and 7.
Parents are asked about their
satisfaction with the PIC:TFK
program benefits. Figure 9
shows that 89% of parents are
very satisfied to satisfied with the
program benefits. The overall
satisfaction rating has increased 6%
from 2007-2008.
pg. 23
Partners in Care Together for Kids | 2008 - 2009
Ninety-four percent of respondents
overall would recommend the
program to a family member or
friend. At three of the six sites,
100% of parents indicate that they
would recommend the program to
a family member or friend. Eight
PIC:TFK parents made a complaint
with CMSN, although there were no
more than two complaints at any
one site.
When asked about the quality of
care their child receives in PIC:TFK,
70% overall indicate that the quality
Excellent or Very Good quality of
care. Children in the mid stage of
illness were 94% less likely than
children in the early stage to report
an Excellent of Very Good quality of
care.
Based on the results of the
multivariate analyses, the significant
factors for satisfaction were other
race, college graduate, not being
married, mid stage, and Site 2.
Children of other races were about
95% less likely than White children
to report high levels of satisfaction.
100%
Percentage
70%
68%
68%
75%
67%
64%
60%
40%
20%
33%
32%
23%
21%
20%
12%
16%16%
7%
5%
0%
4%
0%
Overall
Site 1
Site 3
Site 4
Excellent to Very Good
is excellent or very good (Figure
10). This quality of care rating has
increased 5% from 2007-2008.
Multivariate Regression Results
As described previously, two logistic
regressions were performed to
estimate the relationships between
quality of care and satisfaction and
a variety of individual predictor
variables.
Parameter estimates are
considered to be statistically
significant if their p values are less
than, or equal to, 0.05. Based
on the results of the multivariate
analyses, the significant factors for
quality of care were other race and
mid stage of illness. Children of
other races were about 85% less
likely than White children to report
pg. 24
Good
Site 5
In summary, results from the
multivariate analyses suggest
that there are few differences in
quality of care even after controlling
for individual factors and site
enrollment. There are however
several significant differences in
satisfaction.
Satisfaction with
PIC:TFK Services
Children’s Services
Parents are next asked about what
PIC:TFK services their children
received. Overall, 94% of parents
report that their children received
one or more PIC:TFK service.
Figure 10. Parent Report of Overall Quality of Care, By Site
80%
than the referent group (which is
Site 3).
Site 6
Fair to Poor
Children in the mid stage of illness
were 95% less likely than children
in the early stage to report high
levels of satisfaction. Not being
married and college graduation
was associated with higher levels
of satisfaction as compared to their
referent groups (married and less
than high school). Parents in Site
2 report lower level of satisfaction
Table 2 shows parental reports of
children’s service usage across
all sites19. Between 33% and
57% of children receive support
counseling20. Parents also report
use of music, art and play therapy
sessions; however, it is unclear
from the parent report data whether
these modalities are delivered
as part of the support counseling
session or separately by a licensed
therapist.
Parents are also asked whether
their children’s PIC:TFK nurses
or therapists changed during the
last four months. Overall, 20% of
Table 2. Percentage of Parents who Report their Children
Have Received Services, By Site
Overall
Site 1
Site 3
Site 4
Site 5
Site 6
Support Counseling
43%
53%
51%
35%
57%
33%
Personal Care
35%
50%
33%
14%
57%
23%
Nursing Care
60%
74%
61%
35%
80%
50%
Music Therapy
44%
5%
73%
84%
13%
4%
Art Therapy
25%
21%
52%
0%
13%
8%
Play Therapy
18%
26%
18%
0%
27%
8%
Partners in Care Together for Kids | 2008 - 2009
Figure 11 shows that parents are
overwhelmingly satisfied with all
types of PIC:TFK services received
by their children. Figure 12 shows
that most parents are also satisfied
with the frequency of services,
and that parents are least satisfied
with the frequency of art and play
therapies. Although not shown in
the figure, eight out of nine parents
who were not satisfied with the
frequency of art and play therapies
would prefer more frequent
services.
Parents are asked what other
services their children might have
received. Sixteen families from
two sites report that their children
received massage therapy and all
of those families are very satisfied
to satisfied with the service. Two
parents would have preferred more
frequent massage services.
For each PIC:TFK service, parents
whose children did not receive the
service are asked whether they
would like for their child to receive
that service. Responses are
Percentage
100%
95%
93%
95%
98%
98%
100%
Support
Counseling
Personal Care
Nursing Care
Music Therapy
Art Therapy
Play Therapy
80%
60%
40%
20%
0%
Very Satisfied to Satisfied w ith Service
Figure 12. Satisfaction with the Frequency of PIC:TFK Services
100%
Percentage
The next series of questions ask
parents to report their satisfaction
with each PIC:TFK service, if
their child received that service.
Responses cannot be reported at
the individual site level due to low
samples sizes.
Figure 11. Very Satisfied to Satisfied with PIC:TFK Services
92%
94%
94%
90%
83%
84%
Support
Counseling
Personal Care
Nursing Care
Music Therapy
Art Therapy
Play Therapy
80%
60%
40%
20%
0%
Satisfied w ith Frequency of Services
Figure 13. Children’s Unmet Demand for PIC:TFK Services
Percentage
parents report a change in their
children’s therapists although
responses are not uniform across
sites. No parents at Site 5 report a
change in their therapists, whereas
38% of parents at Site 1 report
seeing different therapists within
four months. Whether or not the
children’s PIC:TFK nurses or
therapists changed in the last four
months did not significantly affect
parental satisfaction levels for any
of the six PIC:TFK services.
100%
80%
60%
40%
20%
0%
36%
38%
Support
Counseling
Personal Care
51%
59%
51%
55%
Nursing Care
Music Therapy
Art Therapy
Play Therapy
shown in Figure 13. The greatest
unmet need is for music, art, and
play therapies, perhaps reflecting
the lack of registered expressive
therapists in Florida. One-half of
parents report that they would like
their children to receive nursing
care.
Family Services
For each PIC:TFK service,
respondents are asked whether
they or another family member
received that service. Parents
are only asked if another family
member has received music, art,
or play therapies if the enrolled
child has have a sibling living in
the household. Sixty-five percent
of parents report that there is more
than one child under the age of 21
years in their household.
Table 3 shows the number of
parents who report that a service
was used by another family
member, by type of service21. The
results show that family members
use counseling more than any other
service. Respite is the second
most commonly received service;
however, receipt of services
varies by location. Few families
receive volunteer services or
expressive therapies (art, music
pg. 25
Partners in Care Together for Kids | 2008 - 2009
Unmet Needs
Table 3. Percentage of Parents who Report that Family
Members Received Services, By Site
Overall
Site 1
Site 3
Site 4
Site 5
Site 6
Support Counseling
37%
32%
49%
39%
20%
29%
Music Therapy
17%
0%
43%
20%
0%
0%
Art Therapy
16%
0%
39%
0%
22%
0%
Play Therapy
11%
25%
11%
20%
22%
7%
Respite
27%
39%
12%
3%
29%
44%
Volunteer Services
11%
11%
16%
0%
27%
4%
No Services
31%
42%
27%
30%
20%
29%
Figure 14. Very Satisfied to Satisfied with PIC:TFK Services
Received by Family Members
Percentage
100%
94%
100%
100%
100%
97%
100%
Support
Counseling
Music Therapy
Art Therapy
Play Therapy
In Hom e
Respite
Volunteer
Services
80%
60%
40%
20%
0%
Very Satisfied to Satisfied w ith Service
Percentage
Figure 15. Family Members’ Unmet Demand for PIC:TFK Services
100%
80%
60%
40%
20%
0%
29%
32%
Support
Counseling
Music Therapy
40%
34%
35%
32%
Art Therapy
Play Therapy
In Hom e
Respite
Volunteer
Services
and play therapies), and receipt of
these services varies by site. As
shown in Figure 14, parents are
overwhelmingly satisfied with all
the PIC:TFK services received by
family members.
Thirty-one percent of respondents
report family members do not
receive PIC:TFK services. These
families are enrolled in Site 1 (8
families), Site 3 (12 families), Site
4 (7 families), Site 5 (3 families),
and Site 6 (7 families). Parents
who report that family members did
not receive a PIC:TFK service are
pg. 26
asked whether they would like to
receive that service. Responses
are shown in Figure 15. Between
29% and 40% of parents report that
their family members would like to
start receiving a PIC:TFK service.
One-quarter of parents report that
they would like to see six additional
services covered by PIC:TFK.
Table 4 shows that the greatest
unmet need is for provision of
services to the parent or other
family members while the child is in
the hospital. Currently, there is no
billing mechanism to enable family
members to continue receiving
PIC:TFK services while a child is
hospitalized. The second greatest
need is the need for interaction
with families of children with similar
diagnoses. It is important to note
that some of these services are
offered by Medicaid and it is unclear
if the parents know they are offered
Medicaid services or if they have
used the maximum allowable
number of units and cannot get
more services.
Decisional Conflict Scale (DCS)
The DCS aims to capture the
amount of decisional conflict
experienced by parents when
making a treatment decision for
their children. The DCS measures
whether respondents feel like they
made an informed values-based
decision, are likely to stick with
their choice, and are satisfied
with their decision. The DCS was
administered to all parents, even
though only 59% of respondents
Table 4. Affirmative Responses to the Inclusion of Additional
PIC:TFK Services
Service
Agree with Inclusion %
Services provided by my child’s PIC:TFK therapist/nurse to me
or my family members while my child is in the hospital
79%
Community groups for children with similar diagnoses
77%
Nutritional counseling
62%
Services that teach me how to care for my child at home once
they are discharged from the hospital
59%
Short-term day care for my child in a location other than my
home
53%
Genetic counseling
44%
Partners in Care Together for Kids | 2008 - 2009
report making a decision about their
children’s treatment in the past six
months.
Disenrollments
In the three months prior to the
telephone survey, the administrative
database shows that 41 children
disenrolled from the program. Of
this group, 16 parents completed
the survey. Additionally, three
parents indicated that their children
disenrolled from the program, for a
total of 19 disenrollees.
The main reasons given for
disenrollment are listed in
descending order:
• Parents do not know the reason
why their children stopped
receiving services (6),
• Parents do not know what the
PIC:TFK program is (3),
• Children are no longer in CMSN
because they lost Medicaid or
insurance coverage (3),
• Parents think that their children
are still enrolled in PIC:TFK (2),
• Children move to full hospice (1),
50
40
Score
Overall, the respondents’ average
score is 20.3 with a standard
deviation of 15.8, indicating a
low level of decisional conflict.
Parents’ responses to the five
individual DCS domains are shown
in Figure 16 and the bars indicate
the standard deviation from the
mean score. The mean score is
below 25 for all domains. Individual
responses to the sixteen statements
can be found in the technical
appendix.
Figure 16. Respondents’ Scores on the Five Domains of the
Decisional Conflict Scale
30
20
10
20.1
20.3
20.6
Values Clarity
Support
24.6
16.8
Uncertainty
Effective Decision
0
Informed
*Standard deviation bars are shown
insurance (1),
• Parents stop services because
they are too busy (1),
• Parents stop services because
they can’t get the services that
they want (1), and
disenrollment categories. In
addition, the section cross-walks
the disenrollment reasons from the
parent survey to the disenrollment
reasons noted by the CMSN staff
in the PIC:TFK administrative
database.
• Parental refusal (1).
Of the eight parents who believe
that their child is still enrolled in
PIC:TFK, or do not know why their
children stopped receiving services,
six are located in Site 2. Site 2
stopped providing services in mid
2008, and it appears that parents in
Site 2 are not aware that services
have ceased or would like further
information. Two parents indicate
that they are either too busy to
continue receiving services, or
that they cannot get the services
that they want. However, it should
be noted that no parents report
stopping services because they
are unhappy with the quality,
frequency, or type of PIC:TFK
services. Although parents may
choose to stop services, they are
not dissatisfied with care.
Section III, which is presented
next, discusses the process,
and importance of, creating new
• Children receive private
pg. 27
Partners in Care Together for Kids | 2008 - 2009
Summary and Recommendations
This section of the report describes
parental satisfaction with the
frequency and quality of PIC:TFK
services received by themselves,
their children, and other family
members. The survey asked
parents about their satisfaction
with the scope of the PIC:TFK
services and if they have unmet
needs. Parents of children recently
joining the program are asked about
their satisfaction with enrollment
procedures and parents of children
recently leaving the program are
asked the reason for leaving the
program.
The key findings are as follows:
• Three significant factors were
found to influence parents’
participation in the PIC:TFK
telephone survey: children’s
race, children’s age, and the
children’s stage of illness.
• Approximately two-thirds of
parents of new enrollees indicate
that they first learned about the
program from their children’s
NCC.
• Thirty-five percent of parents
of new enrollees do not recall
receiving a list or being told
about PIC:TFK services and
one-half are located at one
PIC:TFK site.
• The majority (89%) of parents
are very satisfied to satisfied
with the program benefits, and
the overall satisfaction rating has
increased 6% from 2007-2008.
Regression results show that
being married and graduating
from college significantly
increase satisfaction.
pg. 28
• Seventy percent of parents
report that the quality of care
that their children receive in
PIC:TFK is excellent or very
good. Regression results show
that children of other races and
those in the mid stage of illness
have significantly lower levels of
satisfaction.
• One-quarter of parents report
that they would like to see
additional services included in
the PIC:TFK benefits package
and the greatest reported
demand is for the continuation of
PIC:TFK services to the parent
or family members while the ill
child is hospitalized.
• Ninety-three percent to 100%
of parents are satisfied with
the different services received
by their children (support
counseling, personal care,
nursing care, music therapy,
art therapy, and play therapy).
Eighty-four percent to 94% of
parents are satisfied with the
frequency of each service.
• Of the 19 parents of recent
disenrollees, six parents are
unsure why their children had
stopped receiving services, two
thought that their children are
• Ninety-four percent to 100% of
parents are satisfied with the
services received by themselves
or their other family members
(support counseling, respite,
music therapy, art therapy,
play therapy, and volunteer
services). Thirty-one percent of
respondents report that no one
other than their ill child received
any PIC:TFK services.
• Some families report that
they are not receiving some
PIC:TFK services but would
like to. For example, 36%
of parents would like for their
children and 29% of parents
would like for themselves or
another family member to start
receiving support counseling.
The greatest unmet need for
children is for art, music and
play therapies. The greatest
unmet need for family members
is art therapy for siblings,
followed by in-home respite
services.
At a Glance
Parents of black
children are less
likely to participate
in the survey.
93% to 100%
of parents are
satisfied with
the PIC:TFK
services (support
counseling,
personal care,
specialized
nursing care,
in-home respite,
music, art and
play therapies).
Partners in Care Together for Kids | 2008 - 2009
still enrolled in PIC:TFK, and
three parents did not know what
the PIC:TFK program is.
The Institute makes the following
recommendations.
• The PIC:TFK Steering
Committee, as well as the
Technical Advisory Panel, should
investigate options for increasing
the response rate among parents
of Black children.
• CMSN staff currently enter
enrollment information into the
PIC:TFK enrollment database,
however key demographic
information is missing for some
children (especially race, gender,
and diagnosis) and some contact
information is out of date. The
Institute recommends that
CMSN headquarters consider
developing an online enrollment
database which interfaces with
CAPS and other existing CMSN
databases. The Institute also
recommends that hospice staff
have restricted access to this
online database, and the ability
to update contact information
in real time. Giving hospice
staff access to the enrollment
database will also aid in joint
care planning efforts.
changed or if further research
into the parents’ needs should
be conducted.
• Parents of all disenrollees
should be sent a disenrollment
letter as a standard practice and
the letter should be printed in
both English and Spanish.
• Survey questions should be
added to determine why the
parents have unmet needs. For
example, if a parent indicates
that she would like for her child
to receive support counseling
follow up questions should
be asked to determine if this
service was or was not part
of her child’s care plan, if she
asked her nurse for the service
and was turned down, etc.
At a Glance
Some families
report that
they are not
receiving
some PIC:TFK
services but
would like
to. Future
research should
address why
some parents
have unmet
needs and if the
PIC:TFK service
package needs
to change.
• Given that 35% of new enrollees
were not given a list or told about
the available PIC:TFK services,
further communication efforts on
the part of CMSN and hospice
may be necessary.
• Based on the results from the
unmet need portion of the parent
survey, the PIC:TFK Steering
Committee should investigate if
the service package needs to be
pg. 29
Partners in Care Together for Kids | 2008 - 2009
Section III.
Administrator Survey
pg. 30
Partners in Care Together for Kids | 2008 - 2009
Introduction
At a Glance
15 standard
categories are
established
to track
disenrollments.
More than 99%
of families leave
the program
for reasons
other than
being unhappy
with PIC:TFK
services.
Administrative surveys are an
important component of the
program evaluation, as they give
valuable insights into whether
the program is operating as
intended. Findings from previous
administrative surveys have
described the sites’ operational
practices, standards of care, and
procedures, as well as issues
arising during the implementation
phase of the PIC:TFK program22.
It is important to monitor practices
over time, and thus the current
administrative survey covers
similar ground to previous surveys.
However, the focus of the site
visits this year, and this section
of the report, is to investigate the
reasons why children disenroll
from the program. As previously
noted in Section I, disenrollments
have steadily risen over time, but
the reasons for disenrollment are
unclear. In part, disenrollments
are due to children losing program
eligibility, mainly through loss of
insurance, death, or moving out of
the service area. In past PIC:TFK
program reports, other reasons for
disenrollment were poorly defined
and did not clearly distinguish
whether parents were dissatisfied
with an aspect of care, or simply
that the program no longer met the
children’s or families’ needs. In
this report, information from the site
visits were used to better describe
the reasons why children are
disenrolling from the program, and
to categorize and enumerate those
disenrollment reasons.
CMSN and hospice staff, recoded a
disenrollment reason for each child.
The site visits also provided a
timely opportunity for the Institute
to undertake face-to-face training
with CMSN staff on the new
enrollment database. As mentioned
previously, the database contains
a drop-down list of disenrollment
categories. This feature ensures
that the collected information is
standardized and helps to reduce
coding errors associated with
typing in text. The Institute trained
CMSN staff on which disenrollment
category to choose in which
situation, and provided staff with
a reference table. The Institute
also distributed a Database User
Manual, explaining how to add
data, sort data, print lists, and other
functions.
Data Sources
Two data sources are used in this
section of the report. In August
2008, administrative surveys were
distributed by email to CMSN and
hospice staff at the six participating
sites. Qualitative survey data was
then collected from key CMSN and
hospice personnel during scheduled
site visits in August.
During each site visit, the reason
for disenrollment was reviewed
for each child by the Institute.
The first review was with CMSN
staff, followed by a more detailed
review with hospice staff. As a
result of the site visits, the Institute
established 15 disenrollment
categories and, together with the
pg. 31
Partners in Care Together for Kids | 2008 - 2009
Survey Results
Administrative Surveys
Responses from the
administrative surveys cover
similar ground to the 20072008 evaluation findings. As
reported previously, the sites
are complying with the PIC:TFK
operational guidelines in terms of
referrals, timely follow-up, interagency meetings, care planning,
and reporting enrollments.
However, the sites still report
operational issues with regards
to reimbursement and staffing.
Many of the sites report that the
reimbursement rates and the
funding allocated to administrative
costs are too low. Both of these
issues are beyond the auspices
of the PIC:TFK Program Director
and/or CMSN headquarters
and could be addressed by the
PIC:TFK Steering Committee.
Table 5. Ranking of Usefulness of PIC:TFK Protocols, By CMSN Site
CMSN Office Site
Protocol
Standardized forms
One Three Four Five Six
3
2
1
4
1
Seven Total Ranking
1
12
1
PIC:TFK implementation guidelines
1
1
2
7
4
4
19
2
Statewide meeting
2
7
3
1
5
3
21
3
Training by Program Director
7
3
6
3
2
2
23
4
Site visits by Program Director
5
4
4
2
6
7
28
5
Chart reviews by Program Director
4
5
5
5
7
6
32
6
Technical assistance calls
6
6
7
6
3
5
33
7
Table 6. Ranking of Usefulness of PIC:TFK Protocols, By Hospice Site
Hospice Site
PIC:TFK implementation guidelines
One Three Four Five Six
1
1
5
3
1
Seven
-
Total Ranking
11
1
Statewide meeting
4
7
1
2
2
1
16
2
Site visits by Program Director
5
3
3
1
5
-
17
3
Chart reviews by Program Director
6
2
4
5
3
-
20
4
Training by Program Director
7
4
2
4
6
3
23
5
Standardized forms
2
5
6
6
4
-
23
5
Technical assistance calls
3
6
7
7
7
2
30
7
*Site 7 submitted incomplete data and their contributions are not counted towards the total
The sites are asked to report the
most useful PIC:TFK protocol,
and the responses are given in
Tables 5 and 623. As of August
2008, the CMSN sites report
that the standardized forms are
the most useful protocol. The
statewide meeting ranks highly
for both CMSN and hospice staff,
and the technical assistance calls
are viewed as the least useful.
• Families cannot commit to the
program because they feel
stressed or overwhelmed and
don’t want another agency
coming into their homes,
• Children lose Medicaid or CMSN
coverage, and
• Families ask for more than the
program can offer.
Site Visits
Based on their experiences,
CMSN sites are asked to explain
why program disenrollments had
increased in the last year. Their
answers fall into the following four
broad categories:
• Children or family members
reach their therapeutic goals
and will not benefit from
continued services,
pg. 32
The following quotations illustrate
some of their sentiments.
“Some families do ask for more
than the program can offer such as
increased respite hours, a Home
Health Aid every day, using the
PIC:TFK physician visits to replace
primary care visits.”
“As children spend more time in
the program they begin to meet
their goals, others have become
stable and no longer need the
PIC:TFK program or palliative care
or upon review there are no further
benefits for the child from the
PIC:TFK program… children that
are disenrolled can be re-enrolled
at a later date if there is a decline in
their health status or other services
are needed.”
“[Families may feel overwhelmed
because of the situation at home]
and do not want another person in
the home or one more appointment
to keep.”
Analysis of the December 2008
disenrollment data reveal that 49%
of children left the program because
they no longer meet the eligibility
criteria. Table 7 shows the seven
ways in which children lose their
Partners in Care Together for Kids | 2008 - 2009
eligibility, and the corresponding
percentage of children who
disenrolled from the PIC:TFK
program for those reasons.
The most common reason is
relocation, followed by the loss of
Medicaid coverage. It should be
noted that children can be reenrolled in the program after their
insurance is reinstated, or upon
transfer to Safety-Net status. Reenrolled children are not included
in the disenrollment statistics
below. Similarly, if a child
disenrolls multiple times, only the
most recent disenrollment reason
is captured in the disenrollment
statistics in Table 7.
While 49% of children left the
program because they no longer
met the eligibility criteria, 51%
disenrolled for other reasons.
To assist the CMSN sites with
categorization challenges, the
Institute produced a reference
guide that details scenarios for
each disenrollment category. The
reference guide is reproduced
in Table 8. Both the PIC:TFK
Program Director and the
CMSN sites had the opportunity
to provide feedback on these
disenrollment categories.
Table 7. Disenrollment Criteria- Loss of Eligibility
Reason for Loss of Eligibility
%
Moved out of the county
17%
Died
12%
Lost Medicaid
12%
Closed to CMSN
4%
Moved to a long term care facility
3%
Moved to full hospice
1%
PCP did not recertify child
1%
Table 8. Disenrollment Criteria- Reference Guide
Category
Family Not
Contactable
Family Not
Interested
Scenario
Select this reason if you genuinely can not contact the family. For example:
x Phone number is disconnected.
x Family has moved, or is away for an extended period of time.
Select this reason if you have tried contacting the family and they are nonresponsive. For example:
x Family member is not home at scheduled appointment times.
x You repeatedly leave voicemail messages, with no response.
x You send a letter informing the family that they will be disenrolled unless they
call back, with no response.
Family Not
Using Services
Select this reason if the family is receptive to the PIC:TFK program, however the
program is not a priority. For example:
x Family says that they are too busy to schedule any appointments.
x Family says that they feel overwhelmed with another provider in the house.
x Family says that PIC:TFK isn’t a top priority for them at the moment.
Services are No
Longer Required
Select this reason if the child’s or family’s goals have been met. For example:
Family is
Receiving
Services
Elsewhere
Select this reason if services are being duplicated. For example:
Family Wants
Services Not On
Offer
Select this reason if the family does not understand program goals. For example:
Unhappy with
Services
Select this reason if the family has voiced dissatisfaction with the quality or
frequency of care. For example:
x Family may be in crisis after diagnosis and require support counseling. Over
time, the situation stabilizes and family no longer wants counseling.
x PIC:TFK therapist teaches the family new techniques and the family follows
the therapist’s recommendations. Several months later, the family and
therapist agree that the child’s therapeutic goals have been met and that
he/she will not benefit from further sessions.
x Child is receiving counseling at school, from a behavioral health provider, or
community counseling service.
x Family is receiving 24/7 nursing care.
x Family is more interested in tangible supplies than supportive services.
x Family only wants services not offered at your site (i.e. registered art therapist).
x Family reports an incident or expresses dissatisfaction.
x Family doesn’t want to see a particular PIC:TFK therapist.
x Family expresses their frustration with less frequent services.
Exogenous
Factors
Select this reason if events occur beyond your control.
x It is not safe for the case worker to enter the house.
x Child is incarcerated or there is suspicion of child abuse/domestic violence.
pg. 33
Partners in Care Together for Kids | 2008 - 2009
Table 9 shows the percentage of
children who disenrolled from the
program for reasons other than
loss of eligibility. The most frequent
reason for program disenrollment is
the families’ lack of interest, or non
responsiveness followed by family
not using services. It is important
to note that only one family was
reported as being dissatisfied with
PIC:TFK services.
Table 9 shows that one-fifth of
parents are not interested, even
though they initially agreed to
participate in the program. It is
unclear why these parents do
not return phone calls or miss
scheduled appointments. Since
hospice resources can be tied
up making multiple follow-up
attempts, several sites have
developed a disenrollment letter to
send to non responsive families.
The disenrollment letter informs
families that services will be
discontinued unless they contact
the PIC:TFK program. These sites
anecdotally report some success
with this approach. Currently
the disenrollment letters are sent
in English, but the sites plan to
translate the letters into Spanish.
pg. 34
In Section II, parents of children who left the program in the past three
months are asked the reason for their children’s disenrollment. The
Institute cross-checked these parent reported reasons with the PIC:TFK
enrollment database reported reasons. Discounting those parents whose
children stopped receiving services when Site 2 left the program, there is
50% agreement between what the parents indicated was the disenrollment
reason and what the nurses indicated was the disenrollment reason.
In the parent satisfaction survey, two parents report that they do not
know why services stopped. For those same two parents the database
notes that one family did not use services and the other family was not
interested in receiving services. Another parent reports that they cannot
get the services they want; however, the site reports that the family is
not interested in receiving services. These disagreements illustrate the
difficulties inherent in trying to understand the complex reasons behind
disenrollment. In some instances it is difficult for the PIC:TFK sites
to know whether a non responsive family wants to continue receiving
services or not.
Table 9. Disenrollment Criteria- Reasons Other than Loss of Eligibility
Reason for Disenrollment
%
Family Not Interested
21%
Family Not Using Services
10%
Services are No Longer Required
10%
Family Wants Services Not On Offer
4%
Family Not Contactable
2%
Exogenous Factors
2%
Family is Receiving Services Elsewhere
1%
Unhappy with Services
<1%
Partners in Care Together for Kids | 2008 - 2009
Summary and Recommendations
Administrative surveys and site
visits are important components
of the program evaluation, as
they give valuable insights into
whether the program is operating as
intended. Findings from previous
administrative surveys have
described the sites’ operational
practices, standards of care, and
procedures, as well as issues
arising during the implementation
phase of the PIC:TFK program24.
The main focus of the site visits,
and this section of the report, is
to investigate the reasons why
children disenroll from the program.
The key findings from the
administrative surveys and site
visits are as follows:
• The sites report operational
issues with regards to
reimbursement and staffing.
Many of the sites report that
the reimbursement rates
and the funding allocated to
administrative costs are too low.
Both of these issues are causes
for concern for the long term
sustainability of the program,
however they are beyond
the auspices of the PIC:TFK
Program Director and/or CMSN
headquarters.
• The CMSN sites report that the
standardized forms are the most
useful protocol. The statewide
meeting ranks highly for both
CMSN and hospice staff, and
the technical assistance calls are
viewed universally as the least
useful.
• One-half of children leave the
program because they no longer
meet the eligibility criteria.
The most common reason for
disenrollment is relocation,
followed by the loss of Medicaid
coverage or CMSN coverage,
death, relocation to full hospice
or a long term care facility, and
non re-certification by the PCP.
• One-half of children disenroll
from the program for reasons
other than loss of eligibility.
The most reported reason for
program disenrollment is the
families’ lack of interest, or ‘non
responsiveness’ (21%), followed
by families not using services
(10%) or the hospice determining
that services are no longer
required (10%). Only one family
who disenrolled was dissatisfied
with PIC:TFK services.
The Institute makes the following
recommendations.
• A special study to investigate the
indirect costs associated with
providing services to PIC:TFK
participants should be conducted
as many hospices continue
to question the adequacy of
reimbursement. The study could
enumerate the administrative
costs of providing services
(travel costs, training, care
planning, care coordination,
staffing) which would also be
helpful for establishing staffing
patterns and capacity limits for
hospices.
• The Institute recommends that
the PIC:TFK Program Director
shares the disenrollment findings
with all new sites entering the
PIC:TFK program. It is important
for hospices to be aware that
one-quarter of families entering
the program are either not
At a Glance
CMSN staff
report that
one-half of
children leave
the program
because they no
longer meet the
eligibility criteria
(e.g., relocation,
loss of Medicaid,
death).
One-third of
children disenroll
because the
parents are
non-responsive
(21%), or are not
using services
(10%).
contactable or are unresponsive.
Hospices can then factor this
indirect cost information into
their break-even cost estimates
and adjust staffing rosters
accordingly.
pg. 35
Partners in Care Together for Kids | 2008 - 2009
Section IV.
Nurse Care
Coordinator Survey
pg. 36
Partners in Care Together for Kids | 2008 - 2009
Introduction
At a Glance
The NCC
survey
includes the
following
modules:
•PIC:TFK
program
knowledge
•Attitudes and
knowledge
towards
hospice and
palliative care
•Referral
patterns
Nationally, experts have called
for the integration of pediatric
palliative care into ongoing
medical management during the
early stages of illness, from the
point of diagnosis onward25,26,27.
Evidence from studies with the
adult population repeatedly show
that physicians delay referring
patients to hospice because of a
lack of familiarity with palliative
care, a reluctance to make a
terminal diagnosis, discomfort
communicating poor prognoses,
complicated hospice admission
criteria, difficulties deciding when
to refer, and perceived family
reluctance28. Conversely, hospice
efforts to educate and engage with
physicians in the community can
be an enabling factor to physician
referral29.
Less is known about providers’
willingness to refer children to
pediatric palliative care services.
One study shows that 91% of
physicians are likely to refer
children with life-threatening and
terminal illnesses to a home health
agency that provides pediatric
palliative care and hospice30,31.
However, physicians are not asked
about the timing of referrals, which
can be an additional challenge
in the pediatric setting as many
pediatric illnesses are characterized
by prognostic uncertainty and
variable lengths of survival32,33.
Although physicians are the
primary gatekeepers for hospice
referrals, studies show that nurses
and physicians face similar
barriers to hospice referrals,34,35.
The most common obstacles
reported by the hospital nurses
are the unwillingness of a patient
or the patient’s family to accept
the prognosis or the hospice
referral, nurses’ discomfort, belief
of physician’s hesitance, sudden
death of the patient, and nurses’
desire to maintain hope among
patients and patients’ families36.
The same survey showed that 65%
of the hospital nurses who cared
for terminally ill patients in the
last three months did not discuss
hospice with the patient’s family,
and their willingness to discuss
hospice was predicated on their
own comfort levels and their belief
in the benefits of hospice37.
The PIC:TFK program is the first
publicly-funded program to provide
supportive care for children and
families from the point of diagnosis
onwards. In Florida, the primary
persons responsible for initiating
referrals to the PIC:TFK program
are the CMSN Nurse Care
Coordinators (NCCs). As such,
it is important to determine the
NCCs’ knowledge of, and attitudes
towards, pediatric palliative care.
This section describes a survey
undertaken with all CMSN NCCs
in Florida. The survey compares
responses from the PIC:TFK sites
and the non PIC:TFK sites. All
NCCs in the PIC:TFK sites annually
receive on-site training from the
PIC:TFK Program Manager. The
survey aims to determine any gaps
in the NCCs’ knowledge base,
which can be useful for developing
or refining pediatric palliative care
training modules in the future.
Data Source
There are 21 CMSN Area Offices
located in Florida, yet a centralized
list of NCCs is not readily available.
Instead, a group-administered
survey approach was adopted.
Each Regional Nursing Director
was asked to provide by email
the number of NCCs in their Area
Office. The Institute then mailed
the requisite number of survey
packets to each Area Office. Each
packet contained a survey, replypaid envelope, and instructions
for completing the survey online.
A tracking ID links respondents
to their respective Area Offices;
however, surveys are completely
pg. 37
Partners in Care Together for Kids | 2008 - 2009
anonymous. Reminders were sent
to the Nursing Directors two, four,
and six weeks after the first mailing.
Figure 17 shows the number
of NCCs in each CMSN Area
Office, as reported by the Nursing
Directors. There are 454 NCCs in
Florida, with the highest number of
NCCs clustered in Tampa and the
lowest number located in MarathonMonroe. There are 206 NCCs
employed at PIC:TFK sites and
248 NCCs employed at the non
PIC:TFK sites.
The overall survey response rate
is 61% (279/454)38. The response
rate for NCCs from PIC:TFK sites
is 68% (141/206) compared with
a 56% response rate from non
PIC:TFK sites (138/248).
Survey Instrument
The survey instrument is a modified
version of a survey developed
by the Institute to capture
referral practices of Floridian
and Californian primary care
practitioners39. The original survey
was validated by five pediatricians
and three pediatric nurse
practitioners. After consultation
with the Technical Advisory Panel,
additional questions were added
about the NCCs’ knowledge of
PIC:TFK. Two series of questions
were also included to assess
NCCs’ general attitudes towards,
and knowledge of, palliative care
services.
The NCC survey is comprised of
the following six modules.
Demographics: Demographic
questions capture respondent’s
age, gender, race/ethnicity,
qualifications, prior experience with
palliative care, and participation
in palliative care training.
Respondents are also asked about
the number of CMSN children
assigned to their current caseload,
whether they work full-time or parttime, and whether they conduct
their case management solely by
telephone.
PIC:TFK Program: The NCCs
are asked eight questions to test
their knowledge of the PIC:TFK
program. NCCs are asked whether
the PIC:TFK program operates in
their area and if so, whether they
have referred a child, along with
Figure 17. Number of Nurse Care Coordinators in Florida, by CMSN Area Office
pg. 38
Partners in Care Together for Kids | 2008 - 2009
general knowledge questions about
eligibility criteria and the scope of
PIC:TFK services.
Attitudes: An existing survey
instrument is used to test
the NCCs’ attitudes towards
palliative care. The instrument
developers previously tested the
survey questions with 264 area
physicians40. In addition to the
six original questions, NCCs are
asked six supplemental questions
developed by the Institute. NCCs
are asked to report their agreement
with each statement on a 5-point
scale from “strongly agree” to
“strongly disagree”; responses
are then collapsed into “agree”,
“disagree”, and “neither agree or
disagree”.
Knowledge Quiz: An existing
survey instrument is used to test
the NCCs’ knowledge of hospice
policies and services41. NCCs are
asked seven knowledge questions
with possible responses of
“agree”, “disagree”, and “not sure”.
Responses are then translated
into “correct”, “incorrect”, and “not
sure” based on criteria specified
by the authors. For the statistical
analyses, the “not sure” responses
are grouped with the “incorrect”
responses. The overall percentage
of correct responses is calculated
for the Knowledge Quiz.
Palliative Care Quiz for Nurses:
The Palliative Care Quiz for Nurses
(PCQN) is a 20-item scale used to
assess nurses’ general knowledge
of palliative care42. The PCQN
tests the nurses’ knowledge of
the philosophy and principles of
palliative care, the management
and control of pain and other
symptoms, and the provision of
psychological and spiritual care
to individuals and their families.
Possible response categories
are “true”, “false”, and “not sure”.
Responses are then translated
into “correct”, “incorrect”, and “not
sure” based on criteria specified
by the authors. For the statistical
analyses, the “not sure” responses
are grouped with the “incorrect”
responses. The overall percentage
of correct responses is calculated
for the PCQN.
Referrals: These survey questions
aim to assess whether or not NCCs
will refer children with specific
diagnoses to palliative care
services, and if so, to determine
the timing of those referrals. The
diagnoses include cancer, cystic
fibrosis, HIV, extreme prematurity,
genetic diseases, metabolic
diseases, sickle cell disease,
cerebral palsy, brain injury,
muscular dystrophies, asthma,
diabetes, and Attention Deficit
Hyperactivity Disorder. For each
of the diagnoses, respondents are
asked to choose from the following
answers: “does not need referral”,
“needs referral at diagnosis”,
“needs referral once the child
and family had been living with
the disease for a while, but the
condition is stable”, “needs referral
once the child’s condition becomes
unstable”, and “needs referral at the
end of life, once curative treatment
is no longer an option.”
Analysis
Respondents are split into two
groups depending on whether
or not their CMSN Area Office
participates in the PIC:TFK
program. Area Offices classified
as participants are Ft. Myers,
Gainesville, Jacksonville, Miami
North, Miami South, Pensacola,
Sarasota, St. Petersburg, and West
Palm Beach43.
Area maps in this report are
created with EpiInfo44, and all
data analyses are conducted with
STATA version 10.045. Chi-square
tests assess whether or not there
are significant differences in the
attitudes toward palliative care
for NCCs who are employed in
Area Offices that participate in the
PIC:TFK program versus those
who are in a non-PIC:TFK Area
Office. T-tests assess if there are
significant differences in the overall
scores on the Knowledge Quiz and
the PCQN between the participating
and non participating Area Offices.
Logistic regression models are
used to determine whether
participation in the PIC:TFK
program affects referral patterns.
Specifically, NCCs are asked if
they would refer children who
have one of 12 diagnoses. If
they respond positively, NCCs
are then asked when the most
appropriate point in the child’s
disease trajectory that referral
should be made. In the logistic
regression, only respondents who
indicate that a referral should be
made are included. A value of one
is assigned to those respondents
who indicate that the child should
be referred at diagnosis or when
the child had been living with the
disease for a while and a value
of zero is assigned to those who
responded that palliative care is
only appropriate once curative
therapy has been forgone or if they
responded that palliative care is not
needed at all. Predictor variables
that control for demographics and
experience were included in the
models.
pg. 39
Partners in Care Together for Kids | 2008 - 2009
Survey Results
At a Glance
Of the 454
CMSN
Nurse Care
Coordinators
in Florida, 61%
participated
in a pediatric
palliative care
survey.
Demographics
Table 10 shows that the majority
of respondents are older than 50,
White, female, and have more than
20 years experience as a practicing
nurse. The demographic profile
of respondents at the PIC:TFK
sites and non PIC:TFK sites is
similar, with the exception that
more PIC:TFK respondents hold a
Masters degree.
Respondents are asked about
their prior employment history with
either hospice or within a palliative
care setting. Fifteen percent of
respondents were previously
employed by hospice. Seven
percent of NCCs had ever worked
as a member of a palliative care
team in a hospital, and 27% had
ever provided palliative care in
pg. 40
Table 10. Demographic Profile of Respondents,
by PIC:TFK Site Participation
Age Category
20-30 years
31-40 years
41-50 years
50+ years
Gender
Female
Male
Race/ethnicity
White non-Hispanic
Black non-Hispanic
Hispanic
Other
Years as a Practicing Nurse
0-9 years
10-19 years
20+ years
Highest Degree
ARNP
MS
PhD
RN
Total
Non
PIC:TFK Site
PIC:TFK Site
4%
12%
24%
59%
6%
15%
21%
58%
3%
10%
26%
61%
99%
1%
99%
1%
99%
1%
81%
11%
4%
4%
83%
10%
4%
2%
79%
12%
4%
5%
14%
22%
64%
17%
20%
63%
11%
24%
65%
1%
5%
0%
94%
0%
2%
0%
98%
2%
8%
0%
90%
a nursing facility or a home health agency. PIC:TFK and non PIC:TFK
respondents do not significantly differ in their palliative care experience.
Of those respondents with prior palliative care experience, the average
number of years employed with hospice was three years, compared with
six years with a hospital palliative care team, and five years with a nursing
facility/home health agency.
Fourteen percent of NCCs report ever completing a formal palliative
training course. Completion rates do not differ significantly based on
PIC:TFK participation. Of those respondents who completed a training
course, the most popular course is the End-of-Life Nursing Education
Consortium (ELNEC) curriculum followed by the Initiative for Pediatric
Palliative Care (IPPC) curriculum.
Respondents are asked several questions pertaining to their employment
as NCCs. Most NCCs are employed full-time (90%) and, on average,
they have worked as an NCC for 7.5 years. There are more part-time
employees at PIC:TFK sites (16%) than at non PIC:TFK sites (5%). Thirtyseven percent of respondents report that they conduct all of their case
management by telephone, and this does not vary significantly by PIC:TFK
site participation.
The average self-reported caseload for a NCC is 181 children, although
Figure 18 shows that the average caseload varies significantly across
Partners in Care Together for Kids | 2008 - 2009
Figure 18. Average Caseload of CMSN Children, by CMSN Area Office
the state. Orlando NCCs report
the highest caseloads, followed by
Ocala, Rockledge, Ft. Lauderdale,
and Jacksonville. NCCs report
the lowest caseloads in MarathonMonroe, followed by Ft. Myers
and Pensacola. On average,
PIC:TFK respondents report
significantly smaller caseloads than
non PIC:TFK respondents. The
average self-reported caseload
at a PIC:TFK site is 166 children
compared with 196 children at sites
where the PIC:TFK program does
not operate.
PIC:TFK Questions
Figure 19. Time Spent Coordinating Care after a PIC:TFK Referral
Percentage
100%
80%
60%
49%
40%
27%
24%
More Time
Less Time
20%
NCCs at the PIC:TFK sites are
asked whether they have referred
a child to the PIC:TFK program.
Sixty-three percent of NCCs have
made a referral, and of those, 51%
report that the referral impacts the
amount of time spent coordinating
the child’s care. Figure 19 shows
that 24% of NCCs think that the
referral results in less time spent
coordinating care, while 27% report
the opposite.
0%
No Difference
All NCCs are asked three questions
about their familiarity with the
PIC:TFK program’s eligibility criteria
(Table 11). For all three questions,
more than one-quarter of NCCs
respond that they are unsure of the
correct answer.
Time Spent Coordinating Care
Table 11. Familiarity with Eligibility Criteria for the PIC:TFK Program
Statement
Correct
(%)
Incorrect
(%)
Not Sure
(%)
The PIC:TFK program operates in my area
56%
11%
33%
A child must be in the Children’s Medical Services Network
to be eligible for the PIC:TFK program
34%
25%
41%
To be eligible for the PIC:TFK program, a child’s primary
care physician must certify that the child has a life limiting
illness
70%
4%
26%
Eleven percent of respondents can
not correctly identify whether or not
the PIC:TFK program operates in
their area.
pg. 41
Partners in Care Together for Kids | 2008 - 2009
Figure 20. NCC Agreement with “The PIC:TFK program operates in my
area,” by PIC:TFK Program Participation
Percentage
100%
80%
60%
40%
20%
0%
86%
58%
25%
17%
Correct
9%
6%
Incorrect
Non PIC:TFK Site
Not Sure
PIC:TFK Site
Percentage
Figure 21. NCC Agreement with “A child must be in CMSN to be eligible for the
PIC:TFK program,” by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
57%
51%
20%
17%
Correct
24%
25%
Incorrect
Non PIC:TFK Site
Not Sure
PIC:TFK Site
Percentage
Figure 22. NCC Agreement with “To be eligible for the PIC:TFK program, a child’s
primary care physician must certify that the child has a life limiting illness,” by
PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
85%
One-third of respondents correctly
answer that a child must be
enrolled in CMSN to receive
PIC:TFK services. Figure 21
shows that, despite scoring better
than NCCs from non PIC:TFK
sites, one-half of the PIC:TFK
respondents fail to correctly identify
CMSN enrollment as a requisite
admission criteria. The majority
of respondents correctly answer
that to be eligible for PIC:TFK, the
primary care physician must certify
that the child has a potentially
life-limiting illness. Figure 22
shows that PIC:TFK respondents
are significantly more likely than
non PIC:TFK respondents to know
the certification requirement for
program admission.
56%
39%
6%
Correct
13%
2%
Incorrect
Non PIC:TFK Site
Not Sure
PIC:TFK Site
Table 12. Familiarity with PIC:TFK Service Restrictions
Statement
Correct (%)
Incorrect (%)
Not Sure (%)
Parents of children enrolled in PIC:TFK can
receive PIC:TFK services
62%
3%
35%
Siblings of children with life-limiting illnesses
cannot receive PIC:TFK services
48%
14%
38%
Children enrolled in the PIC:TFK program
can receive services while hospitalized
4%
49%
42%
Figure 20 shows that PIC:TFK
respondents are significantly
more likely to correctly answer
this question. Respondents who
incorrectly identify that the PIC:TFK
pg. 42
program does not operate in their
area. However, this may not be
surprising given that Gainesville has
only recently rejoined the program
and the Miami program has not
operated since mid-2008.
program operates in their area
are predominantly from Tampa,
Ocala, Orlando, and Naples. Some
respondents from Miami South,
Miami North, and Gainesville
incorrectly answer that the PIC:TFK
NCCs are asked three questions
about their familiarity with the
program’s service limitations,
and their responses are shown in
Table 12. The first two questions
ask whether or not other family
members can receive PIC:TFK
services, and the last question
asks about the provision of
PIC:TFK services while the child
is hospitalized. For all questions,
more than one-third of NCCs
respond that they are unsure of the
correct answer.
Two-thirds of NCCs could correctly
identify that parents of children
with life-limiting illnesses can
also receive services. However,
14% of respondents incorrectly
answer that siblings of enrolled
children are not eligible to receive
services. Figures 23 and 24 show
Partners in Care Together for Kids | 2008 - 2009
Percentage
Figure 23. NCC Responses to ”Parents of children enrolled in PIC:TFK
can receive PIC:TFK services,” by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
74%
51%
40%
1%
Correct (%)
20%
6%
Incorrect (%)
Non PIC:TFK Site
One in 20 NCCs correctly
answer that enrolled children
cannot receive PIC:TFK services
while in hospital, as this would
constitute a duplication of Medicaid
reimbursable services. Figure
25 shows that 57% of PIC:TFK
respondents incorrectly answer this
question, scoring more incorrect
answers than NCCs from the non
PIC:TFK sites.
Not Sure (%)
PIC:TFK Site
Percentage
Figure 24. NCC Responses to “Siblings of children
with life-limiting illnesses cannot receive PIC:TFK services,”
by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
57%
55%
38%
7%
Correct
21%
21%
Incorrect
Non PIC:TFK Site
Not Sure
Attitudes
PIC:TFK Site
Percentage
Figure 25. NCC Responses to “Children enrolled in the
PIC:TFK program can receive services while hospitalized,”
by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
57%
56%
40%
4%
29%
14%
Correct
Incorrect
Non PIC:TFK Site
that significantly more PIC:TFK
respondents than non PIC:TFK
respondents are aware that
the PIC:TFK program provides
supportive services to both children
and their family members.
Not Sure
PIC:TFK Site
Table 13. Attitudes towards Hospice Care
Statement
All NCCs
Agree Disagree Not Sure
I am comfortable discussing a hospice referral with patients
and families
70%
10%
20%
Hospice services should be discussed with the patients prior
to the terminal stage of their disease
90%
3%
7%
Hospice is a more cost-effective model of terminal care than
that provided by a hospital, nursing home, or home health
services
78%
3%
18%
The physician is the most appropriate person to introduce
the concept of hospice to the patient and families
43%
36%
22%
When hospice services are used, the primary/referring
physician loses control over the management of the patient
10%
73%
17%
Discussion of hospice gives patients and families a sense of
hopelessness; a sense that nothing more can be done
21%
61%
18%
The NCCs are asked six questions
to assess their attitudes towards
hospice care. Table 13 shows
that about one-third of NCCs
disagree that the physician is
the most appropriate person to
introduce the concept of hospice
to the patient and families. There
are no significant differences in
respondents’ attitudes towards
hospice care based on their
participation in the PIC:TFK
program. Responses to the
individual questions, by PIC:TFK
site participation, can be found in
the technical appendix.
pg. 43
Partners in Care Together for Kids | 2008 - 2009
Percentage
Figure 26. NCC Agreement with “I think there is a way to reimburse
providers in my area for pediatric palliative care prior to the end stage of
illness,” by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
64%
52%
43%
20%
8%
Agree
4%
Disagree
Non PIC:TFK Site
Not Sure
PIC:TFK Site
Percentage
Figure 27. NCC Agreement with “I am not familiar with hospice services
in this community,” by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
67%
21%
81%
16%
13%
Agree
Disagree
Non PIC:TFK Site
3%
Not Sure
PIC:TFK Site
Percentage
Figure 28. NCC Agreement with “I am uncertain of the types of service
covered under the hospice benefit,” by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
43%
41%
52%
20%
16%
Agree
Disagree
Non PIC:TFK Site
19%
Not Sure
PIC:TFK Site
NCCs are asked three supplemental questions regarding their knowledge of hospice benefits in their
community. Figure 26 shows that the PIC:TFK respondents are significantly more likely to believe that there
is a reimbursement mechanism for palliative care provision in their community. Figures 27 and 28 show NCC
responses to two negatively worded statements. PIC:TFK participants are significantly more likely to disagree
with both statements than participants from the non PIC:TFK sites. PIC:TFK respondents are more familiar with
hospice services in their community and are more certain of the types of services covered under the hospice
benefits than their counterparts at the non PIC:TFK sites.
pg. 44
Partners in Care Together for Kids | 2008 - 2009
Figure 29. NCC Agreement with “I think that it is difficult to know when, in the
course of illness, a child should be referred to palliative care,”
by PIC:TFK Program Participation
Percentage
100%
80%
60%
40%
20%
0%
47%
34%
33%
Agree
46%
20%
Disagree
Non PIC:TFK Site
20%
Not Sure
PIC:TFK Site
Percentage
Figure 30. NCC Agreement with “I do not think it is appropriate to approach families
whose children have just been diagnosed with a life-limiting illness to talk about
palliative care,” by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
57%
26%
40%
30%
26%
Agree
Disagree
Non PIC:TFK Site
13%
Not Sure
PIC:TFK Site
Percentage
Figure 31. NCC Agreement with “I do not think it is appropriate to approach families
whose children have a life-limiting illness and are in the mid stage of illness to talk
about palliative care,” by PIC:TFK Program Participation
100%
80%
60%
40%
20%
0%
74%
8%
86%
18%
3%
Agree
Disagree
Non PIC:TFK Site
11%
Not Sure
PIC:TFK Site
Figures 29 to 31 show NCC responses to three negatively worded statements about the timing of palliative care
referrals. PIC:TFK participants are significantly more likely to disagree with the statements than participants from
the non PIC:TFK sites. Figure 29 shows that the PIC:TFK respondents are more confident about when, in the
course of illness, they should make a referral to palliative care services. NCCs from the PIC:TFK sites are also
more likely than their counterparts at non PIC:TFK sites to believe that it is appropriate to broach the topic of
palliative care with families of children recently diagnosed with a life-limiting illness, or in the mid stage of their
illness. These findings are not surprising, given that the central tenet of the PIC:TFK program is the integration
of pediatric palliative care into ongoing medical management during the early stages of illness. However, onethird of PIC:TFK respondents still report challenges deciding when in a child’s course of illness to refer them
pg. 45
Partners in Care Together for Kids | 2008 - 2009
Figure 32. Percentage of Correct Responses to the Knowledge Quiz,
by PIC:TFK Program Participation
Percentage of
Correct Responses
100%
80%
63%
61%
All Sites
Non PIC:TFK Site
65%
60%
40%
PIC:TFK Site
Figure 33. Percentage of Correct Responses to the PCQN,
by PIC:TFK Program Participation
Percentage of
Correct Responses
The mean percentage of correct
answers to the PCQN is 54%.
Responses to the twenty individual
questions can be found in the
technical appendix.
20%
0%
100%
80%
60%
54%
54%
54%
All Sites
Non PIC:TFK Site
PIC:TFK Site
40%
Figure 33 shows that PIC:TFK
participation does not affect the
respondents’ general knowledge
of palliative care and pain
management, as determined by
the PCQN. PIC:TFK respondents,
however, are significantly
more likely than non PIC:TFK
respondents to correctly answer the
following three questions:
20%
0%
to palliative care and one-third
of PIC:TFK respondents do not
believe that it is appropriate to talk
about palliative care with families
of children who have just been
diagnosed with a life-limiting illness.
higher than the physicians46. NCCs
are more likely than the surveyed
physicians from the published
study to know that the following
statements are false:
•
Knowledge Quiz
On average, all respondents
correctly answer 63% of the
knowledge questions. Figure
32 shows that PIC:TFK
participants score slightly higher
on the knowledge quiz than their
counterparts at non PIC:TFK sites;
however, the scores do not differ
significantly. Responses to the
individual questions can be found in
the technical appendix.
When the NCC results are
compared with those from a prior
published study of physicians, the
NCCs score 19 percentage points
pg. 46
Palliative Care Quiz
for Nurses (PCQN)
Patients receiving radiation and/
or chemotherapy for palliation
of symptoms are not candidates
for hospice,
• Palliative care is appropriate
only in situations where there is
evidence of a downhill trajectory
or deterioration (false),
• Suffering and physical pain are
synonymous (false), and
• The philosophy of palliative
care is compatible with that of
aggressive treatment (true).
Referrals
•
If a terminally ill patients lives
beyond the 6 month prognosis,
hospice services must be
terminated,
•
A patient must have a caregiver
available 24 hours per day to be
eligible for hospice care, and
•
Patients must have health
insurance to receive hospice
services.
NCCs are asked whether or not
they would refer a child with one
of 13 diagnoses for palliative
care services. Referral rates by
diagnosis category are listed in
Table 14. For ten of the thirteen
diagnoses, more than 90% of NCCs
would refer children to palliative
care services at some point in their
illness trajectory. Attention Deficit
Hyperactivity Disorder (ADHD) is
included only as a comparative
point for the other potentially lifelimiting illnesses as most national
Partners in Care Together for Kids | 2008 - 2009
Logistic regressions (not shown
here) reveal that participation in
the PIC:TFK program is a positive
significant factor in predicting
referrals for severe prematurity,
cancer, congenital anomalies,
metabolic disorders, HIV, cystic
fibrosis, sickle cell disease, cerebral
palsy, brain injury, muscular
dystrophies, diabetes. This means
that more nurses in the PIC:TFK
sites versus the non PIC:TFK sites
would refer children with these
diagnoses to palliative care. The
models also account for NCCs’ age,
gender, race/ethnicity, years nursing
experience, prior palliative care
experience, and completion of a
palliative care training course.
Table 14. Referral to Palliative Care Services, by Diagnosis
Diagnosis
Cancer
Brain injury
HIV
Cystic fibrosis
Congenital anomalies
Muscular dystrophies
Extreme Prematurity
Metabolic diseases
Sickle Cell Disease
Cerebral Palsy
Diabetes
Asthma
Attention Deficit Hyperactivity Disorder
guidelines do not indicate that
ADHD is an appropriate diagnosis.
For 12 of the 13 diagnoses,
participation in the PIC:TFK
program does not significantly affect
the NCCs likelihood of referring
a child to palliative care services.
However, more respondents from
the PIC:TFK sites (97%) than the
non PIC:TFK sites (90%) are likely
to refer a child with sickle cell
disease to palliative care services.
Respondents are then asked about
the appropriate timing of referrals
to palliative care. Responses are
collapsed into two categories:
“before the end of life” (referred
either at diagnosis or when the child
had been living with the disease
for a while) or “end of life” (once
curative therapy had been forgone).
Table 15 shows the percentage of
respondents from non PIC:TFK and
Referral
%
100%
100%
99%
99%
98%
97%
96%
96%
94%
91%
76%
55%
20%
PIC:TFK sites who believed that a
referral should be made before the
end of life for each of 12 diagnoses.
For all diagnoses, respondents
from PIC:TFK sites are more
likely to refer a child to palliative
care services earlier in the child’s
disease trajectory, a philosophy that
is compatible with the goals of the
PIC:TFK program.
Table 15. Timing of Referral to Palliative Care Services, by Diagnosis and
PIC:TFK Program Participation
Diagnosis
Asthma
Diabetes
Cerebral palsy
HIV
Metabolic/storage diseases
Sickle cell disease
Genetic diseases/congenital anomaly
Muscular dystrophies
Brain injury
Cystic fibrosis
Extreme prematurity
Cancer
Refer Before the End of Life
Non PIC:TFK Site PIC:TFK Site
48%
71%
56%
79%
59%
84%
59%
86%
62%
85%
62%
85%
63%
85%
64%
90%
65%
86%
65%
88%
68%
88%
73%
87%
P value
<0.005
<0.005
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.001
<0.005
Note: P-values less than 0.05 indicate that there are statistically significant
differences between PIC:TFK and non PIC:TFK sites.
pg. 47
Partners in Care Together for Kids | 2008 - 2009
Summary and Recommendations
The PIC:TFK program is the first
publicly-funded program to provide
supportive care for children and
families from the point of diagnosis
onwards. The primary contact
responsible for initiating referrals to
the PIC:TFK program is the CMSN
NCC. As such, it is important to
determine the NCCs’ knowledge
of, and attitudes towards, pediatric
palliative care. This section
describes the first palliative care
survey undertaken with CMSN
NCCs in Florida. The survey
compares responses from the
PIC:TFK sites and non PIC:TFK
sites.
The key findings are as follows.
• Fifteen percent of respondents
were previously employed by
hospice. Fourteen percent of
NCCs report ever completing
a formal palliative care training
course, such as the End-of-Life
Nursing Education Consortium
(ELNEC) course.
• The average self-reported
caseload for a NCC is 181
children, however the average
caseload varies significantly
across the state.
• Sixty-three percent of NCCs at
the PIC:TFK sites have made a
referral to the PIC:TFK program.
About one-quarter of NCCs
report that they spend less time
coordinating children’s care after
making a PIC:TFK referral, onequarter report that they spend
more time coordinating care, and
one-half of NCCs report that the
referral makes no impact on their
workload.
• PIC:TFK respondents are
significantly more likely than their
pg. 48
counterparts at non PIC:TFK
sites to know whether the
PIC:TFK program operates in
their area, to correctly identify
that CMSN enrollment and PCP
certification are required for
admission to the program, and
that both siblings and parents
may also receive PIC:TFK
services.
• Seventy percent of NCCs report
feeling comfortable discussing
a hospice referral with patients
and their families while 90% feel
that hospice services should be
discussed with the patients prior
to the terminal stage of their
illness.
• NCCs correctly answered 63%
of questions on a knowledge
quiz about hospice policies. The
mean percentage of correct
answers on the Palliative Care
Quiz for Nurses is 54%.
• Respondents from the PIC:TFK
sites are more likely than their
counterparts at non PIC:TFK
sites to refer children to palliative
care services before the end of
life for 12 diagnoses.
The Institute makes the following
recommendations.
• The Institute recommends that
the PIC:TFK Steering Committee
discuss the findings from the
NCC survey to determine if any
changes to the current training
protocol are needed.
• Although the PIC:TFK NCCs
scored higher than the non
PIC:TFK NCCs, there were
several gaps in knowledge
that could be addressed in
future training such as the
fact that there is no allowable
reimbursement when children
are hospitalized.
• Very few NCCs have completed
a formal palliative care training
program and the PIC:TFK
Steering Committee should
consider if this requirement, as
described in the implementation
guidelines, is needed given the
differences in scores between
the PIC:TFK and non PIC:TFK
sites.
• The PIC:TFK Program Director
could consider tailoring the
training to the sites’ individual
needs. For example, in sites
where enrollment numbers are
low best practices could be
emphasized as well as brain
storming sessions on how to
overcome barriers.
• NCCs that have made
successful referrals in the past
could be paired with new NCCs
so that when the NCCs think
they might have a child who is
eligible they could discuss this
with established NCCs.
• NCCs and program managers
at each site should be asked
what other resources are
needed, such as brochures and
promotional items that would
help in recruitment.
• Once new sites are approved
and begin enrolling children, it
is recommended that the NCCs
in those sites complete the
same survey so that a pre, post
analysis can be performed.
Partners in Care Together for Kids | 2008 - 2009
Section V.
Claims and
Encounter Data
pg. 49
Partners in Care Together for Kids | 2008 - 2009
Cost Patterns
Although improving the lives of
children with life-limiting conditions
is paramount to the PIC:TFK
program, fiscal conscientiousness
is also important. This section of
the report summarizes the cost
of services by service code and a
variety of health care expenses for
children before and after enrollment
into the PIC:TFK program.
Data Sources
Medicaid claims, encounter, and
enrollment files were used in both
cost analyses. As mentioned
previously, not all children enrolled
in PIC:TFK are enrolled in
Medicaid. No Title XXI, or SCHIP,
data were available for analysis.
However, enrollment data show that
about 90% of PIC:TFK children are
enrolled in Medicaid so the data
might not be complete, but they
are representative of the program
overall.
Cost Patterns
The cost patterns for the PIC:TFK
program are presented by service
type. The findings are presented
for state fiscal year 2007-2008
however there is a lag between the
time when claims are processed
by AHCA and when they are
transmitted to the Institute. This is
also true of adjudicated claims and
denied claims. Therefore, the data
presented in Table 16 cover state
fiscal year 2007-2008, but do not
reflect a six month lag period.
Beyond cost patterns of the
PIC:TFK services, it is also
important to determine if the
PIC:TFK program has an effect on
cost patterns for other aspects of
health care for the children enrolled
in PIC:TFK. For example, although
the PIC:TFK program primarily
pg. 50
provides supportive care to children
and their families, the program may
have a spillover effect on incidence
of inpatient admission. If families
feel that the pain and symptom
management of their children’s
needs can be met at home
through the PIC:TFK nurses and
physicians, they may have fewer
inpatient admissions. Therefore,
the Institute queried the Title XIX
claims and encounter database
and determined the average
inpatient, outpatient, emergency
department, pharmacy, and total
costs 12 months prior to enrollment
in PIC:TFK and 12 months after
enrollment in PIC:TFK. Table 17
presents the average costs pre and
post program enrollment, as well as
the average difference.
The reader should be cautioned
when interpreting these results for
several reasons. First, the claims
and encounter data only reflect
the Title XIX costs. Second, these
differences only represent the
average change across the study
period (24 months) and do not
control for child level characteristics
that may influence expenditure
patterns. As more children reach
the 1 year enrollment benchmark
in the program this will provide
more observation points to conduct
a more sophisticated analysis
that would account for additional
predisposing factors that influence
expenditures (race, gender, stage
of illness, etc). Results presented
in Table 17 are provided for
descriptive information only and
should not be interpreted otherwise.
The Institute continues to work
with faculty from the University
of Florida’s Departments of
Epidemiology and Health Policy
Research to develop a study
design that would allow for more
rigorous statistical testing of cost
changes pre and post enrollment
in the PIC:TFK program. During
calendar year 2008, the Institute
developed and tested a statistical
model that used a comparison
group of children to determine if
the cost changes were caused by
the PIC:TFK program or by other
factors. The assumptions of the
model did not hold and therefore
the results are not statistically valid.
Further work is currently being done
to try and identify a comparison
group of children.
Partners in Care Together for Kids | 2008 - 2009
Table 16. Cost by Service Type, July 2007 to June 2008
Total Cost
Support Counseling
Nursing Care
Activity Therapy
Inpatient respite
In-Home Respite RN
In-Home Respite LPN
In-Home Respite CNA
Personal Care
$60,821
$26,920
$27,632
$1,923
$5,325
$25,017
$12,294
$4,018
Number of Children
Served
233
120
127
3
11
25
15
14
Average Cost per
Child
$261
$224
$217
$641
$484
$1000
$819
$287
Table 17. Average Yearly Costs Pre and Post Implementation
by Service Category
Average Yearly
Costs
Pre PIC:TFK
$34,466
Average Yearly
Costs
Post PIC:TFK
$19,048
Average Yearly Cost
Difference Pre and
Post PIC:TFK
($15,418)
$37,339
$41,512
$4,173
$500
$603
$103
Pharmacy
$9,479
$11,606
$2,127
Total Costs
$80,262
$70,023
($10,239)
Inpatient
Outpatient
Emergency Department
pg. 51
Partners in Care Together for Kids | 2008 - 2009
Summary and Recommendations
The PIC:TFK program is the first publicly-funded program to provide supportive care for children and families from
the point of diagnosis onwards. Costs analyses are important to establish fiscal sustainability and impact.
The key findings are as follows.
• Support counseling is the most used service, which corroborates results from the parent survey, and inpatient
respite is used the least.
• The results show that average yearly inpatient costs fell after enrollment in PIC:TFK and emergency
department, pharmacy, and outpatient costs increased. However, the cumulative effect was a decrease in total
costs of about $10,00047.
The Institute makes the following recommendations.
•
The Institute recommends that the reimbursement regulations associated with inpatient respite be clarified by
AHCA. Utilization of this service may increase if the sites were given more definitive information.
•
Costs should continue to be monitored on a quarterly basis by the PIC:TFK Program Director, AHCA, and
CMSN.
•
Costs for children eligible for Title XXI should be collected and analyzed.
pg. 52
Partners in Care Together for Kids | 2008 - 2009
Endnotes
1
For a history of the program leading up to implementation, see “Partners in Care:Together for Kids
Implementation Guidelines: Operational Standards, Policies, and Protocols,” 2007.
2
Children’s Hospice International. The CHI PACC program. Available at: http://www.chionline.org/. Accessed
January 2009.
3
Sarasota was approved to enroll Title XXI children in 2006, but are waiting for federal approval to be included
in the 1915(b) waiver.
4
Sarasota only serves children who are eligible for Title XXI and Safety-Net. Sarasota has not been officially
approved as a Title 19 site by federal CMS.
5
A copy of the SFY 2007-08 Partners in Care:Together for Kids Report is available from the Institute on
request.
6
This figure has not been adjusted to reflect medical inflation that may have occurred.
7
Miami and West Palm Beach sites previously participated in PIC:TFK, but the hospice organizations (Catholic
Hospice, Hospice of Palm Beach County) no longer provide PIC:TFK services.
8
The Potential Enrollment List was disbanded in August 2008 by the PIC:TFK Steering Committee.
9
The Institute produced a Data Protocol and conducted training on how to collect and transmit the monthly
enrollment data. This included the development of enrollment and discharge codes and how to input data
correctly.
10 Details of the ACCESS database can be found in the Database User Manual developed for the sites.
11 In May 2007, the enrollment figures were adjusted to ensure that all PIC:TFK enrollees had received an
initial hospice assessment. Thirty-nine children without an initial hospice assessment were excluded from the
cumulative enrollment figures.
12 To be classified as newly diagnosed, children must join the PIC:TFK program within six months of their initial
diagnosis. By December 2008, 35% of the children in this category have lived with their illness for more than
six months.
13 Data on race/ethnicity in the enrollment database is incomplete (14% missing data).
14 Child and Adolescent Health Measurement Initiative. Data Resource Center. Available at:
http://cshcndata.org/Content/Default.aspx. Accessed January 2009.
15 Child and Adolescent Health Measurement Initiative. Data Resource Center. Available at:
http://www.cdc.gov/nchs/data/slaits/NSCSHCNIIEnglishQuest.pdf. Accessed January 2009.
16 Institute for Child Health Policy. Addendum to the SFY 2007-08 Partners in Care:Together for Kids Report.
pg. 53
Partners in Care Together for Kids | 2008 - 2009
17 O’Connor AM. User Manual-Decisional Conflict Scale. Available at:
http://decisionaid.ohri.ca/docs/develop/User_Manuals/UM_Decisional_Conflict.pdf. Accessed January 2009.
18 Institute for Child Health Policy. Addendum to the SFY 2007-08 Partners in Care:Together for Kids Report.
19 Numbers add and exceed 100% since many clients used more than one service.
20 As a caveat, parent report data are not always as reliable as cost utilization data.
21 Note that two sites are not included in the table so numbers do not add to the overall figures.
22 A copy of the SFY 2007-08 Partners in Care:Together for Kids Report is available from the Institute on
request.
23 The site key is the same as for the parental satisfaction surveys.
24 A copy of the SFY 2007-08 Partners in Care:Together for Kids Report is available from the Institute on
request.
25 Field M, Behrman R, eds. When Children Die: Improving Palliative Care and End-of-Life Care for Children and
their Families. Washington, DC: National Academy Press; 2002.
26 American Academy of Pediatrics: Committee on Bioethics and Committee on Hospital Care. Palliative Care
for Children. Pediatrics. 2000;106:351-357.
27 World Health Organization. Available at: http://www.who.int/cancer/palliative/en/. Accessed June 2008.
28 McGorty K, Bornstein BH. Barriers to physicians’ decisions to discuss hospice: insights gained from the United
States hospice model. J Eval Clin Pract. 2003; 9(3):363-372.
29 Friedman B, Harwood M, Shields M. Barriers and Enablers to Hospice Referrals: An Expert Overview. J
Palliat Med. 2002; 5(1):73-84.
30 Sheetz M, Bowman M. Pediatric Palliative Care: an Assessment of Pediatricians’ Confidence in Skills, Desire
for Training, and Willingness to Refer for End-of-Life Care. Am J Hosp Pall Care. 2008; 25(2):100-5.
31 Knapp CA, Thompson LA, Madden VL, Shenkman E. Pediatricians Perceptions on Referrals to Pediatric
Palliative Care. J Palliat Med. 2009. In press.
32 Himelstein BP, Hilden JM, Boldt AM, Weissman D. Pediatric palliative care. N Engl J Med. 2004; Apr
22;350(17):1752-62.
33 Hynson JL, Gillis J, Collins JJ, Irving H, Trethewie SJ. The dying child: how is care different?. Med J Aust.
2003; Sep 15;179(6 Suppl):S20-2.
34 Schulman-Green D, McCorkle R, Cherlin E, Johnson-Hurzeler R, Bradley EH. Nurses’ Communication of
pg. 54
Partners in Care Together for Kids | 2008 - 2009
Prognosis and Implications for Hospice Referral: a Study of Nurses Caring for Terminally Ill Hospitalized
Patients. Am J Crit Care. 2005; 14(1): 64-70.
35 Cramer LD, McCorkle, Cherlin E, Johnson-Hurzeler R, Bradley EH. Nurses’ Attitudes and Practice Related to
Hospice Care. Journal of Nursing Scholarship. 2003; 35(3): 249-255.
36 Schulman-Green D, McCorkle R, Cherlin E, Johnson-Hurzeler R, Bradley EH. Nurses’ Communication of
Prognosis and Implications for Hospice Referral: a Study of Nurses Caring for Terminally Ill Hospitalized
Patients. Am J Crit Care. 2005; 14(1): 64-70.
37 Cramer LD, McCorkle, Cherlin E, Johnson-Hurzeler R, Bradley EH. Nurses’ Attitudes and Practice Related to
Hospice Care. Journal of Nursing Scholarship. 2003; 35(3):249-255.
38 Area Offices with a 100% response rate are Sarasota, Daytona Beach, Naples, and Marathon-Monroe. Area
Offices with a response rate of 50% or less are Lakeland (31%), Miami South (40%), Panama City (44%),
Ocala (44%), and Tampa (50%).
39 Knapp CA, Thompson LA, Madden VL, Shenkman E. Pediatricians Perceptions on Referrals to Pediatric
Palliative Care. J Palliat Med. 2009. In press.
40 Ogle KS, Mavis B, Wyatt GK. Physicians and Hospice Care: Attitudes, Knowledge, and Referrals. J Palliat
Med. 2002; 5(1):85-93.
41 Ogle KS, Mavis B, Wyatt GK. Physicians and Hospice Care: Attitudes, Knowledge, and Referrals. J Palliat
Med. 2002; 5(1):85-93.
42 Ross M, McDonald B, McGuiness J. The palliative care quiz for nursing (PCQN): the development of an
instrument to measure nurses' knowledge of palliative care. J Adv Nurs. 1996; 23:126-137.
43 It should be noted that the Gainesville Area Office rejoined the PIC:TFK program after more than a one year
gap, and that three sites (Miami North, Miami South, and West Palm Beach) no longer participate in the
PIC:TFK program at the time of survey distribution.
44 EpiInfoTM Version 3.5.1. Available at: http://www.cdc.gov/epiinfo/. Accessed January 2009.
45 Statistical Analysis Software for Professionals, Release 10. http://www.stata.com/products/overview.html.
46 Ogle KS, Mavis B, Wyatt GK. Physicians and Hospice Care: Attitudes, Knowledge, and Referrals. J Palliat
Med. 2002; 5(1):85-93.
47 This figure has not been adjusted to reflect medical inflation that may have occurred.
pg. 55