The NLB's Long-Term
SC
Survivorship Care Plan
Joseph Tariman, PhC, MN, APRN, BC
University of Washington
Seattle, WA
WA
44
Why Survivorship Care
for Multiple
Multiple Myeloma?
Myeloma?
Increased survival leads to the need for new
approaches to quality survivorship care
Long-term care management offers the
opportunity to enhance the
the patient'
patient s treatment
treatment
outcome and quality of life
45
Multiple Myeloma Patients Are
Living Longer Post
Post Diagnosis
Diagnosis
Age
Relative Survival, %
Group
Increase, %
P Value
p
1990-1992
2002-2004
5-year relative survival
<50
44.8
56.7
11.9
0.001
50 59
38 8
.
48 2
.
94
9.4
0 001
.
60 69
30.6
36.3
5.7
0.09
70 79
27.1
28.7
1.6
0.21
All ages
28 8
.
34 7
.
59
5.9
<0 001
.
10-year relative survival
<50
24.5
41.3
16.8
<0.001
50 59
17.2
28.6
11.4
<0.001
60 69
10.8
15.4
4.6
0.03
70 79
7.4
10.4
3.0
0.09
All ages
11.1
17.4
6.3
<0.001
46
Brenner et al, Blood, 2008
Individuals Diagnosed With MM
Are Living
Living Longer
The Kaplan
Kaplan-Meier curves
curves for
for overall survival
survival from
from diagnosis:
diagnosis:
A.Groups are divided based on the time of diagnosis:
· After 12-31-1996
· On or before 12-31-1996
B.Grouped into 6-year intervals based on the date of diagnosis
47
Kumar et al, Blood, 2008
Reprinted by permission from the American Society of Hematology
Post-Transplantation Relapsed
Patients Are Also
Also Living Longer
The Kaplan
Kaplan-Meier curves
curves for
for overall survival
survival from
from the
the time of
post-transplantation relapse:
A. Grouped into 2-year intervals based on the date of relapse
B. Grouped by whether the patients were treated with one or more newer drugs
Thalidomide
Lenalidomide
Bortezomib
48
Kumar et al, Blood, 2008
Reprinted with permission from the American Society of Hematology
Assessment of Early
Overall Survival
· 1-year survival steadily improving
R/low-dexamethasone
96%
Total therapy 2
92%
VMP (VISTA)
(VISTA)
90%
R/dexamethasone
88%
ASCT
88%
MPT
87%
Thalidomide/dexamethasone
8083%
Increased survival leads to the need for new
approaches to quality survivorship care
49
Barlogie et al. N Engl J Med 2006; Facon et al. Lancet 2007; Palumbo et al, Lancet 2006; Rajkumar et al J Clin Oncol 2006; Rajkumar et al J Clin Oncol
2008; Rajkumar et al ASH 2008; San Miguel et al N Engl J Med 2008;
Nurse-Centric Model
of Survivorship Care
Care*
Nurses are central to
patient management and
healthcare resource
coordination.
Patient Monitoring
Patient Management
Patient Counseling
Patient Research
Nursing roles emerge as
central to survivorship
care.
Patient Advocacy
Patient Education
50
* Developed by ScienceFirst, LLC; All Rights Reserved (www.science-first.com)
International Myeloma Foundation's
Nurse Leadership Board
A partnership with multiple myeloma nurses to gain insights into
their unmet needs and
and to address them and those
those of
of their
their patients
by accomplishing the following objectives:
· Provide insights
insights into
into the
the needs of
of myeloma
myeloma
nurses and their patients
· Identify and implement
yp
key nurse and patient
p
education programs
· Facilitate information flow between the IMF,
li
oncology nursing
i
organ zations,
d
an
patients
51
Meeting the
the Unmet Need
Need
Opportunity to leverage the NLB's experience by
identifying relevant side effects and developing a
Long-Term Survivorship Care Plan for
Multiple
Myeloma
y
· Survivorship Care Plan will enhance the
patient's treatment outcome and qualit
pq
y of life.
· Survivorship Care Plan will need to be updated
as new therapies emerge
52
First Step: Consensus Guidelines
for Management
Management of
of Acute
Acute Side Effects
NLB determined the 5 most common emergent
side effects requiring clinical "Consensus
Statement" development.
Managing the Side Effects of Novel Agents
for Multiple Myeloma: Guidelines and
Patient Education Sheets NLB 2008
Clinical Journal of Oncology Nursing
Sl
Supplement to V l
o . 12
12 (3)
(3)
Peripheral neuropathy
DVT and PE
Myelosuppression
GI effects
Steroid effects
53
IMF-NLB `Consensus Statements' supplemCJON June 2008
NLB Dissemination
· 2010 NLB Speaker Programs: "Consensus on Care"
10 programs
pg
in 10 cities
· Speakers at IMF Patient & Family Seminars
· Speakers at IMF Regional Community Workshops
· NLB poster at
at the
the XII International
International Myeloma
Myeloma Workshop
Workshop
· NLB blogged at the XII International Myeloma Workshop
· Articles appear in Myeloma Today
· Hold informational conference
conference calls with support groups
groups
· Participate as faculty at the annual ONS meeting
· Participate in advocacy initiative Hill visits and in the
communities
· Run patient advisory boards
54
Next Step: Developing a Long-Term
Survivorship Care Plan
Evidence-based data for 5 major long-term side-effect
issues and their management:
g
creation of clinical
practice-based consensus documents
Bone Health &
Functional
Renal
Bone Disease
Mobility
Complications
S&
Sexuality &
Health
Sexual
Maintenance
Dysfunction
Outcome: Survivorship Care Plan and Manuscript
55
Defining Cancer Survivorship
The process of living with,
through, and beyond cancer.
Bt
By hi
this d f
e i
fi i
n ti
ition, cancer
survivorship begins at
diagnosis. It includes peo
gp
ple
p
who continue to have
treatment either to reduce risk
of recurrence or
or to
to manage
manage
chronic disease
(ASCO, 2009)
56
Comparisons of Patient and Physician
Expectations for Cancer
Cancer Survivorship Care
Investigators from the Harvard School of Public Health,
Dana-Fb
Farber Cancer Instit
tit t
u e,
d
an th
the It
Ins it
tit t
u e
of Clinical Evaluative Sciences (Toronto) conducted a
study to compare expectations regarding survivorship
care among PCPs, oncologi t
s s,
d
an
t
pa iti t
en s.
· The results demonstrated a lack of agreement among
these constituents with respect to their roles in ongoing
survivor care
· The discordance was particularly
py high
g between patients
p
and their oncologists. The underlying causes for the
discrepancies were unclear
57
Cheung et al, JCO 2009
Barriers to
to Cancer
Cancer Survivor Care
Care
+
58
Challenges to
to Survivorship
Survivorship Care
Care
As lives are extended, so too are the risks of
developing late or delayed effects
· Major question: Who will be
responsible for
M i
on tit i
or ng
ti
pa
t'
en s h l
ea th?
lth?
Assisting in recovery?
Making referrals?
Paying for continued care?
59
Leigh, Cancer Survivorship: A Nursing Perspective, in Cancer Survivorship Today and Tomorrow, 2007
Cancer Survivorship:
From Individual to
to Experience
Experience
· Defined as
A time frame
A stage or phase
An outcome
· Must take into account
Maintenance therapy
Ib
Incura l
ble b t
u t
t
rea b
a l
ble cancers
Regimen changes
Recurrences
Secondary malignancies
Late effects of treatments
· General health maintenance
60
Cancer Survivorship Care:
"Why Is
Is it
it Important?
Important?"
Institute of Medicine (IOM) Findings
· Cancer survivorship has tripled to 10
million over the past 30 yrs in the US
· Impacting cost on healthcare system
· High elderly population (~6 million)
· One in nine adult cancer survivors
under age 65 is uninsured
· Lack of guidelines for survivors
· Most ill
w return to work, but one in 5
will have cancer-related limitations up
to 5 yrs later
61
Shulman & Ganz ASCO Survivorship Models 2008
IOM Findings:
Survivorship Care
Care (cont'
(cont d)
IOM Recommend t
a ition:
· "All patients completing Rx
shl
hou d
ld receive a
comprehensive treatment
summary & care
care plan
plan."
62
Shulman & Ganz ASCO Survivorship Models 2008
IOM Recommendations
for Quality
Quality Healthcare
Healthcare in
in America
America
· Care based on continuous healing relationships
· Ct
Cust
id
omized care
· Patient as source of control
· Shared knowledge and information
· Evidence-based decision making
· Safety as a system property
· Transparency
· Anticipation of needs
· Continuous decrease in waste
· Ct
Coopera ition
63
Reasons for a Survivorship
Care Plan
· Summarize treatment
· Communicate late effects of
disease and treatment
· Promote interactions between
patients and healthcare providers
· Promote a healthy lifestyle
Prevent early recurrence
Reduce risk of co-morbid conditions
64
Shulman & Ganz ASCO Survivorship Models 2008
What Is a Survivorship
Survivorship Care
Care Plan?
Plan?
· A document
Summarizes what
what transpired during
cancer treatment
Gives recommendations for follow-up care
· It needs to
Be prospective
Identify known
known and potential long
long-term effects
ef
· It aims to
Promote a healthy lifestyle
Prevent recurrence of cancer
Reduce risk of co-morbid conditions
Ed
Ensure a h
dherence to f l
ollow-up
recommendations
65
Implementing Cancer Survivorship Care Planning http://www.nap.edu/catalog/11739.html
Key Elements for Cancer
Survivorship Care
Care Planning
Planning
66
Shulman & Ganz ASCO Survivorship Models 2008
Creation of a Long-Term Survivorship
Care Plan in Multiple Myeloma
· Co-morbid conditions affect
Tr
T eatment
r
options
Survival
Late side effects
· The plan will
Prevent and control
· Adverse cancer diagnosis
· Treatment-related outcomes
Late effects of treatment
Second cancers
Suboptimal quality of life
Provide a knowledge base for follow-up care
and surveillance
Optimize health during cancer treatment
67
Long-Term Care Plan:
Recommendations for Clinicians
Excerpt of the Recommendations for Clinicians: Renal Health
68
IMF NLB Long-Term Care Survivorship Plan, manuscript in preparation
Long-Term Care Plan:
Patient Tear-Out Tool
Excerpt of the Patient Tear-Out Tool: Renal Health
69
IMF NLB Long-Term Care Survivorship Plan, manuscript in preparation
Essentials of Survivorship Care
· Prevention and detection of
new cancers and recurrence
· Intervention for consequences
consequences of
cancer and its treatment
(eg, diabetes)
· Coordination between
specialists and primary care
providers
p
70
Goals of NLB
Survivorship Care Plan
Develop recommendations for schedules of
evaluations and evidenced-based
interventions:
· Enable clinicians
clinicians and patients to
to optimize therapy
therapy
by preventing or adequately treating co-morbid
conditions.
71
Goals of NLB
Survivorship Care Plan (cont'd)
NLB will disseminate this information to
those within the community who can
affect the most change:
· Patients
· Caregivers
· Healthcare providers
72
Survivorship Care Continuum
Individuals with chronic or intermittent disease may
receive ongoing
gg treatment for their disease, but benefit
from survivorship care as they live with their disease
Recurrence
Initial
Continuing
Progressive
treatment
care
Prevention
treatment
Follow-up
disease
Diagnosis
Maintenance
Palliative care
Survivorship isn't a stage!!!!
It is a continuum
continuum from diagnosis through the patient'
patient s life.
73