Lisa K.
K Sharp,
Sharp MA
MA, Ph
Ph.D.
D
Assistant Professor
University of Illinois at Chicago
Disclosure of Conflict of
Interest Information
I have no existing conflict of interest
information to disclose current as of
January 18, 2012.
Presentation Outline
1. Epidemiology of childhood cancer
1
2. Rationale for lifelong survivorship care
3 Justification for intervening
3.
4. RCT design and results
5. Next steps
Childhood Cancer: Age-adjusted trends in SEER
i id
incidence
and
d mortality
li rates, 1975
1975-1995
1995
Ries LAG, et al.(eds). Cancer Incidence and Survival among Children and Adolescents: United States SEER Program 1975-1995,
National Cancer Institute, SEER Program. NIH Pub. No. 99-4649. Bethesda, MD, 1999.
5-year Survival Rate for Childhood
C
Cancer
in the U.S.
S S
Since 1940
Data from : Mariotto AB, et al. Cancer Epidemiology, Biomarkers & Prevention. 2009;18(4),1033-1040.
Uncovering the Cost of the Cure
Common Late Effects
Cancers: breast,
breast thyroid
thyroid, lung
lung, GI
GI, leukemia
 Cardiovascular: valve, conduction, myopathy
 Digestive tract: teeth
teeth, stomach
stomach, intestines
 Reproductive
 Neuro-cognitive
 Hormonal
 Respiratory
 Musculoskeletal
 Immune system: spleen

Cancer Survivors and Siblings with a Chronic
C diti According
Condition
A
di to
t Common
C
Terminology
T
i l
C
Criteria
it i
Oeffinger KC, et al. (2006) NEJM. 355:1572-1582
Cumulative Incidence of Chronic Health Conditions in
th Childhood
the
Childh d Cancer
C
Survivor
S i
Study
St d
((n=10,397)
10 397)
Oeffinger KC, et al. N Engl J Med 2006
Risk-based
Risk
based Follow
Follow-up
up Care
We have a disconnect…
Adult Healthcare
Survivors
Primary Care Providers
Pediatric Healthcare
My Overall Goal

To increase the number of adult
survivors of childhood cancer who are
receiving
g risk-based follow-up
p care.
Cancer Survivorship and Agency Model
CSAM Step
SPEAC Intervention
Uncertainty
Survivorship education
Self-efficacy
How to get medical records
and
Build communication skills
Increased
involvement
in care
* Talk with the PCP
about survivorship care
O-Hair D, et al. (2003) Health Communication. 15(2),193-202.
SPEAC aims to:

Increase survivors’ understanding of treatment-related health
risks
i k - Uncertainty
U
t i t

Teach survivors
survivors’ about the special COG recommendations to
guide their healthcare – Self-efficacy

Teach survivors’ about the role of the pediatric cancer
medical record and how to get their own copy – Self-efficacy

Build survivors’ communication skills (self-efficacy) so they
can speak up and access risk
risk-based
based follow-up
follow up care –
Increased involvement in care
Developmental Stages of SPEAC
Step 1: Focus Groups
n=20
Step 2: Develop and pre-pilot test
n=9
Step 3: Conduct a randomized controlled
pilot trial
Survivor Recruitment thru the
Chicago Healthy Living Study*
Goal: Describe & compare health
behaviors in White, African American,
and Hispanic childhood cancer survivors
versus controls.
R01: Chicago Healthy Living
Studyy
450 Adult Childhood Cancer
Survivors
SPEAC
*Stolley MR et al. Cancer. 2009; 115 (18S):4385-96.
SPEAC Inclusion Criteria





Diagnosed with any childhood cancer excluding CNS
prior
i tto age off 18 years
Completed treatment at least 5 years ago
Currently cancer free and 18 years or older
Self-identifies as African American, Hispanic/Latino or
White
Never received adult risk-based follow-up care
All survivors
i
were recruited
it d ffrom within
ithi 4 h
hospital
it l pediatric
di t i cancer registries.
i ti
Study Design
Self-guided
Self
guided Group
Guided Group
SPEAC – Session 1
Risk
1. Understanding the concept of “health risk”
2. Linking cancer treatment modes & potential risks - risk
is not random
3. Special care is available - the COG guidelines
4. What are medical records & why they are important
Special healthcare
Radiation
Chemotherapy
SPEAC – Session 2
1
1.
2.
3
3.
How to get a copy of your medical records
What to do with the medical records
Who do you feel is best to provide your
survivorship care
SPEAC – Session 3
1.
2.
3.
4
4.
Preparing good questions
Realistic expectations of your Dr.
Knowing what you want out of the visit
Observing and role playing with a standardized Dr
Outcome Measures

Primary: 1
1. Requesting the medical record

Secondary: 1.Scheduling LTFU appt or
2.Talking to a primary care provider
Potential moderators

Perceived Efficacy in Patient-Physician
Patient Physician
Interactions (Maly RC; 1998)

Miller Behavioral Style Scale

Brief Symptom Inventory-18 (Derogatis LR; 2000)

Multidimensional Health Locus of Control
(Miller SM; 1995)
Recruitment
37/160 = 23%
Randomly Selected Sub-sample
160
Total Number of People Who Did
Not Complete RCT
123
Schedule
Issues
43
Ineligible
35
Declined
26
Total Number of People Who
Did Complete
p
RCT
37
Unable to Reach via
Phone/ Address
19
Results:
Demographics
*One survivor in self‐guided group reported “do not know” for cancer type
Sex
Female
Male
Age
Mean ± SD
Mean ±
Range
Age at Diagnosis
Mean ± SD
Range
Ethnicity (n, %)
White
Black
Hispanic
Cancer Diagnosis *
Hematologic
Solid Tumor
R l ti hi St t
Relationship Status
Single
Married/Living as Married
Divorced/Separated
I
Insurance Status
St t
Private
Medicaid/Medicare
None
Self‐guided
n = 19
Guided
n = 18
10 (53%)
9 (47%)
10 (56%)
8 (44%)
32.0 ±
32
0 ± 7.8
78
20.8 – 47
30.4 ±
30
4 ± 8.5
85
19.3 – 49.4
8.8 ± 5.7
1 19
1 –
8.4 ± 5.2
2 18
2 –
3 (15%)
10 (53%)
6 (32%)
6 (32%)
5 (28%)
10 (55%)
3 (17%)
3 (17%)
13 (68%)
5 (26%)
10 (56%)
8 (44%)
13 (68%)
4 (21%)
2 (11%)
15 (83%)
2 (11%)
1 (6%)
10 (53%)
5 (26%)
4 (21%)
6 (33%)
9 (50%)
3 (17%)
Medical Record Requests
3 months*
6 months*
Received
N
No Yes
Y
N
No Yes
Y
Self‐
guided *
guided *
15 3
12 5 (26%)
1 (5%)
Guided
3 15
2 15 (83%)
6 (33%)
Chi-square P<0.001
* One self-guided lost to follow-up at 3 months. Two self-guided/ one guided participant lost to
follow up at 6 months.
Provider Visits During Study
3 months
Self‐guided
Guided
No Yes
11 7
7 11
6 months *
No Yes
8 9
6 11
Both 3 & No visits
6
6 months
th
5 28%
7 39%
6 33%
3 17%
* Two self-guided/ one guided participants could not be contacted for 6 month follow-up.
But was cancer discussed?
Self‐guided
Guided
Talked Cancer
Talked LTFU
6/19 (32%)
2/19 (10%)
10/18 (56%)
7/18 (39%)
This combines results at 3 &/or 6 month visits
visits. Outcomes
at either visit.
Long-Term Follow Up
Outcomes
Contacted
Set appointment
Completed
LTFU visit
Self‐guided
0
0
0
Guided
5 (28%)
5 (28%)
3 (17%)
3 (17%)
2 (11%)
2 (11%)
Moderator Results
PEPPI
BSI Global Severity
Index ≥ 63
Pre
Post
Self‐guided
Self
guided
Guided
7.8
7
8
6.9
8.7
8
7
9.1
Self‐guided
Guided
Pre
16% (3)
39% (7)
NS
Post
16% (3)
11% (2)
SPEAC On
On-line
line
Forty-three people
could not participate
due to the face-to-face
format (scheduling)
Dissemination is
impossible.
Many thanks!
Marian Fitzgibbon,
g
, PhD
 Kevin Oeffinger, MD
 Melinda Stolley
Stolley, PhD
 Health Communication Research Laboratory
at Washington University


Acknowledgements
A
k
l d
t off appreciation
i ti tto allll off
the survivors who shared their experiences
and helped develop SPEAC