Cancer Survivors in the North
Issues and Care
Brown Bag Lunch, Northern Health
June 21, 2012
ML McBride, Research Scientist, Cancer Control Research
BC Cancer Agency; University of British Columbia
BC C/A/YA Cancer Survivors
Outline
• Outline the significance and importance of cancer survivorship
• Describe health-related cancer survivor and survivor care issues
• Use data from our cancer survivor research program to:
– Describe a set of health risks among survivors of a cancer
diagnosed under the age of 25 years, and factors affecting
these risks
– Describe the demand for care by the survivors in the North
– Compare demand for care among BC Health Authority regions
• Describe how this research evidence can inform long term followup care guidelines, models of follow-up care, dissemination of risk
information; and survivor care among other cancer populations
BC C/A/YA Cancer Survivors
Survivorship
Who is a survivor?
For this program, a survivor is someone who is in the phase of the disease
post-initial treatment (operationally defined as living five years or more
post-diagnosis) until recurrence, new cancer, end-of-life care, or death
Why consider survivors and survivor care?
• Advances in treatment -> increased survival, majority survive; increasing
prevalence of survivors AND
• Increasing recognition there is a “cost to cure”, that is, the risk of late
effects mainly due to treatment and disease, necessitating a change in
approach:
– “survival” -> “quality of life”
– “cancer treatment” -> “lifetime care”
BC C/A/YA Cancer Survivors
Number and Rate of Prevalent
Cancers in BC
300000
5000
4500
250000
4000
3500
221316
200000
203908
3000
186940
150000
170550
2500
155139
2000
100000
1500
1000
50000
Rate (per 100,000 population)
Number of Cancer Cases
239075
500
0
0
2005
2008
All Cancers Actual
All Cancers Predicted
Rate per 100,000
2011
2014
2017
2020
Calendar Year
BC C/A/YA Cancer Survivors
Cancer prevalence by age
25.0%
19.3%
Percentage
20.0%
17.8%
18.0%
14.8%
15.0%
11.3%
10.0%
8.0%
5.4%
5.0%
2.2%
3.5%
0.6% 0.9% 1.4%
0.0%
30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84
85+
Age
BC C/A/YA Cancer Survivors
Severity of comorbidity
by cancer site
2.9
7.4
5.5
4.4
6.8
9
10.3
13.3
14.2
14.1
25.4
28.8
16.1
17.3
17.3
20
31.6
27.6
27.3
29.8
Percentage
29.8
None
32.9
Mild
29.3
55.3
53.6
28.6
Moderate
Severe
52.2
46
45.5
38
30.6
Sy
st
em
ng
U
rin
ar
y
Lu
Sy
st
em
ec
k
ig
es
tiv
e
N
D
an
d
ea
d
H
yn
ec
ol
og
ic
al
B
Pr
os
tr
at
e
re
as
t
G
A
ll
Pa
tie
nt
s
31.2
BC C/A/YA Cancer Survivors
Number of comorbidities by
age
12.8
24.3
Percentage
12.5
38.6
16.4
18.4
16.1
20.1
22.5
16.9
19.2
21.1
15
13.6
12.7
6.4
55-64
0
8.8
4.6
65-74
1
2
75+
Age
3
4
5 C/A/YA Cancer Survivors
BC
Quality of Life Model
Physical Well Being & Symptoms
Recurrence or New Cancer
Late Effects
Overall Physical Health
Functional Activities
Strength/Fatigue/Pain
Fertility
Psychological Well Being
Control
Anxiety
Fear of Recurrence
Depression
Enjoyment
Cancer
Survivorship
Social Well Being
Spiritual Well Being
Roles and Relationships
Education/Work/Finances
Affection/Sexual Function
Appearance/Isolation
Meaning of Illness
Religiosity
Transcendence
Hope
Uncertainty
Inner Strength
BC C/A/YA Cancer Survivors
Survivor Follow-up Care
Quality care provides the right care for the right people at the right
time and place (access; appropriateness; equity; effectiveness;
sustainability).
Follow-up care aims to:
– Monitor and treat recurrent and new cancers; prevent and treat
late effects; provide risk-based health advice; provide support
Standards of follow-up care (evidence-based guidelines) need to be
developed and maintained
Models of follow-up care need to be developed and evaluated
BC C/A/YA Cancer Survivors
Childhood Cancer Survivorship
Why examine childhood cancer survivorship?
• Multiple diagnosis types, although over half are leukemias,
lymphomas, brain tumours
• Intensive, multimodal, long-term treatments
• Treatment during growth and development
• High proportion of survivors; many years life gained
• Survivors now aged up to late 50s (multiple life stages)
• Existence of follow-up care guidelines, models of care
BC C/A/YA Cancer Survivors
Childhood/Adolescent/Young Adult
Cancer in Canada
Bone, Soft
tissue
11%
Leukem ia
31%
Others
20%
Neuro
8%
Lym phom
as
11%
Brain
19%
0-14 years
other
38%
HD
16%
Germ cell
15%
Brain
10%
Melanom
NHL
a Thyroid
7%
7%
7%
15-24 years
Canadian Cancer Statistics
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
Childhood, Adolescent, and
Young Adult (CAYACS)
Research Program (CCSRI)
Objectives:
For all five year survivors of a cancer or tumour diagnosed under age
25 years in British Columbia, Canada, from 1970, using population
registers and linked databases, the CAYACS Program aims to:
• Develop a resource for survivorship research
• Determine risks of long term problems, and sociodemographic,
clinical, and other determinants of risks
• Examine patterns and quality of health care in relation to these
risks
• Carry out knowledge dissemination and transfer for change in
policy and practice to optimize patient and health care outcomes
• Evaluate uptake (process) and effectiveness (patient) outcomes
after interventions
BC C/A/YA Cancer Survivors
CANCER CENTRES,
CHILDREN’S HOSPITAL
Cancer Treatment Data
VITAL STATISTICS
Sibling Cohort
CANCER REGISTRY
Survivor Cohort, Patient ID,
Diagnosis, Death Follow-up
MEDICAL INSURANCE
PLAN
Health Utilization Data,
General Population Sample
EDUCATION MINISTRIES
Education Data
BC CANCER AGENCY
Oncology Scheduling,
Screening Data
CAYACS SURVIVOR
RESEARCH RESOURCE
STATCAN
Income and Employment
Info
PHARMANET
Prescription Drug Info
Development of outcome
indicators, analysis files
I. Health
Outcomes
II. Health Care
Outcomes
III. Education
Outcomes
IV. Income and
Employment
V. Knowledge
Translation
BC C/A/YA Cancer Survivors
Outcomes
Patient:
– Late mortality, late morbidity, educational
achievement, income/employment
Health services utilization:
– Physician visits, hospitalizations, outpatient
services, prescription drugs
– Costs of care
Quality care:
– Continuity of care, adherence to care guidelines,
effectiveness of care
BC C/A/YA Cancer Survivors
Outcome Modifiers
Patient:
– gender, attained age, socioeconomic status (SES)
Clinical:
– diagnosis, age at diagnosis, period of diagnosis,
treatment, time since diagnosis, disease progression
Health system:
– Setting (primary/tertiary, pediatric/adult), region of
residence, urban/rural residence
BC C/A/YA Cancer Survivors
Health Outcomes
Childhood cancer survivors surviving at least 5 years had:
• Nine times excess risk of late death (8% next 25 yrs)
• Five times excess risk of a second cancer
• Twice the excess risk of hospital-related morbidity
– Excess risk of all types of problems
– 40% had at least one hospital-related problem
– 20% had two or more hospital-related problems
BC C/A/YA Cancer Survivors
Factors affecting
Hospital-related morbidity
• Increased risk of morbidity for primary treatment involving
radiation, and highest for those with previous radiation,
chemotherapy, and surgery (90% higher risk compared to those
with surgery only)
• Over time, morbidity for late effects other than neoplasms became
more prevalent; risk continued to risk with time since diagnosis
• A recurrence or second cancer prior to five years post- diagnosis
increased risk of late morbidity by 2 times (for second cancer) and
almost 3 times (for recurrence)
BC C/A/YA Cancer Survivors
Educational Achievement
Outcome
FSA meets
expectations
Numeracy Gr 4
Numeracy Gr 7
Numeracy Gr 10
Reading Gr 4
Reading Gr 7
Reading Gr 10
Writing Gr 4
Writing Gr 7
Writing Gr 10
Controls
(n=8386)
No.
%
CNS Tumours
(n=166)
No. % ORadja
Leukemias
Remaining
(n=270)
Survivors (n=346)
a
No.
% ORadj No. % ORadja
836
1255
1024
799
1233
1029
1006
1419
1212
5
13
9
5
13
11
9
18
16
26
41
30
27
40
32
40
52
47
68.2
66.1
52.6
65.2
64.9
52.8
82.1
74.7
62.2
29.4
38.2
25.0
29.4
38.2
30.6
52.9
52.9
44.4
0.2*
0.3*
0.3*
0.2*
0.3*
0.4*
0.2*
0.4*
0.4*
53.1
54.7
43.5
55.1
53.3
46.4
81.6
69.3
68.1
0.5*
0.6*
0.7
0.6
0.6*
0.7
1.0
0.8
1.3
41
53
50
45
54
42
53
65
54
59.4
58.9
58.8
65.2
60.0
49.4
76.8
72.2
63.5
0.7
0.7
1.3
1.1
0.8
0.9
0.8
0.9
1.1
*significant at p=0.05
BC C/A/YA Cancer Survivors
Factors affecting
Educational achievement
• Survivors who were girls were more likely to have lower
achievement than their peers without a previous cancer
• Survivors with a brain tumour diagnosis, or who had received
radiotherapy, in particular CRT, had lower achievement
• Survivors who had received chemotherapy more often were
identified with a physical disability
• Survivors with previous IT MTX were more likely to be designated
as requiring special education
BC C/A/YA Cancer Survivors
Patterns of Health Care
Among childhood cancer survivors surviving at least 3
years, in 3-year period:
• Overall, 97% of survivors saw a physician; 53% at least 10 times;
75% survivors saw a specialist (other than an oncologist)
• 21% were hospitalized; 10% more hospitalizations per survivor; 25%
longer stays than peers
• Almost 90% survivors had at least one drug prescription, notably
CNS agents and hormones
BC C/A/YA Cancer Survivors
Factors affecting patterns of
health care
• More females than males used health care, in survivors as well as
the general population
• Survivors who had experienced a relapse had more visits to
physicians
• Brain tumour survivors, and those who had previous chemotherapy
and/or radiotherapy, had more visits to specialist physicians
• Region of residence, urban/rural residence, and socioeconomic
status did NOT affect utilization in general; however
–
–
Survivors living in areas with a lower socioeconomic level had more visits to
general practitioners
Rate of drug prescriptions was lowest in the North
BC C/A/YA Cancer Survivors
Quality Health Care Outcomes
Continuity of provider care
– Patient experience of care over time as being coherent and linked
Adherence to recommended care
– Appropriate care to the appropriate group at the appropriate time
Why are continuity of care, and adherence to recommended care,
important for a survivor population?
– Basic tenant of risk-based care, with the potential to enhance
relevant screening, surveillance and prevention efforts
– Enhances care provision based on knowledge of patients’ medical
history/preferences
BC C/A/YA Cancer Survivors
Adherence to survivor follow-up care
guidelines
• 75% of childhood and young adult cancer survivors are eligible for
at least one follow-up test, based on COG recommendations
• Less than 50% of at-risk survivors received most tests
• Brain tumour survivors received recommended tests more often
• Mammography is generally not conducted for at-risk women who
received mantle irradiation as children
• SES and region of residence did not affect adherence to guidelines
BC C/A/YA Cancer Survivors
Translation to Policy and Practice
At provincial level:
• Knowledge dissemination to decision-makers, program managers, health
providers, survivors
• Collaboration with Ministry of Health Services, College Family Physicians
to assess total demand for care, risk-based predictions of future
utilization, best models of follow-up care
• Provision of BC-based evidence to inform the implementation and
evaluation of one clinic-based model for follow-up care
–
–
–
comprehensive assessment of risks; identification of at-risk survivors, those
potentially underserved groups and those not receiving appropriate care
measurement of adherence to guidelines before and after program
measurement of change in patient outcome with program
At cancer care level:
• Collaboration with Tumour Group to inform survivor care
• Measurement of BCCH and VCC oncology workload supporting cancer
survivors
BC C/A/YA Cancer Survivors
Adult Cancer Survivorship Research
High- impact:
• High prevalence due to high incidence and survival, many personyears gained; potentially harmful treatments; potential effects on
multiple domains (long-term health, income/employment)
Breast cancer survivor study (2009-)
• 64 thousand women diagnosed aged 18 years and older 1970-2008
in BC; 38 thousand survived at least 5 years (to end 2008)
• Canadian Breast Cancer Foundation (BC and Yukon) funding;
focusing initially on health and health care outcomes
• Breast Ca TG co-investigators (Tyldesley, Wai, Allan)
• Analyses of late mortality and morbidity, health care utilization
underway; unique assessment of effect of treatment on outcomes
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors
Conclusions
• This survivor resource is a tool for identifying at-risk survivor
groups, characterizing risks, in order to inform development of
guidelines for follow-up care
• It can also be used for quality performance measurement, and
evaluation of uptake and (cost) effectiveness of interventions
• Methodology
–
–
Relevant to all cancer groups across cancer continuum
Population-based, across most of the health care system, timely,
comprehensive, cost-effective
• We need participation from family physicians (the primary provider
of cancer survivor follow-up care), health authorities, and cancer
centres to identify issues and help find solutions – change in policy
and practice
BC C/A/YA Cancer Survivors
Acknowledgements (1)
Data Sources
BC Cancer Registry
BC Cancer Agency
BC Children’s Hospital
BC College of Pharmacists
Ministry of Health Services
Ministry of Education
Ministry of Advanced Education
Statistics Canada
Website
www.cayacs.ca
Co-Investigators
Dr. Paul Rogers, BCCH
Dr. Sam Sheps, UBC
Dr. Victor Glickman, UBC
Dr. Anne-Marie Broemeling, IHA
Dr. Karen Goddard, BCCA
Dr. Joan Hu, SFU
Dr. Stuart Peacock, BCCA
Dr. Sheila Pritchard, BCCH
Dr. Rod Rassekh, BCCH
Dr. Linda Siegel, UBC
Dr. John Spinelli, BCCA
Dr. Scott Tyldesley, BCCA
Dr. Elaine Wai, BCCA
Dr. Sharon Allan, BCCA
BC C/A/YA Cancer Survivors
Acknowledgements (2)
Funders
Research Team
Canadian Cancer Society (CCS)
Research Institute
CCS BC&Yukon
Canadian Centre for Applied
Research in Cancer Control
Canadian Breast Cancer
Foundation (BC&Yukon)
Shebnum Devji
Laura Game
Nelson Ha
Maria Lorenzi
Miranda Tsonis
Rita Parmar
Sharon Relova
Yang Zhang
PI mmcbride@bccrc.ca
BC C/A/YA Cancer Survivors
BC C/A/YA Cancer Survivors