BC C/A/YA Cancer Survivors

Cancer Survivors in the NorthIssues and Care

Brown Bag Lunch, Northern Health June 21, 2012

ML McBride, Research Scientist, Cancer Control

ResearchBC 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 follow-up care guidelines, models of follow-up care, dissemination of risk information; and survivor care among other cancer populations

BC C/A/YA Cancer Survivors

SurvivorshipWho 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

BC C/A/YA Cancer Survivors

Cancer prevalence by age

0.6% 0.9% 1.4%2.2%

3.5%

5.4%

8.0%

11.3%

14.8%

17.8%

19.3%18.0%

0.0%

5.0%

10.0%

15.0%

20.0%

25.0%

Per

cen

tag

e

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

45.5

55.3 53.6 52.246

3831.2 30.6

29.8

31.627.6 27.3

29.8

32.9

29.328.6

17.3

10.313.3 16.1

17.320

25.4 28.8

7.42.9 5.5 4.4 6.8 9

14.2 14.1

Pe

rce

nta

ge

None

Mild

Moderate

Severe

BC C/A/YA Cancer Survivors

Number of comorbidities by age

6.4 4.6

21.1

13.68.8

22.5

19.2

15

18.4

20.1

16.9

12.7

12.5

16.4

16.1

12.824.3

38.6

55-64 65-74 75+Age

Per

cen

tag

e

0 1 2 3 4 5

BC C/A/YA Cancer Survivors

Quality of Life ModelPhysical Well Being & Symptoms

Recurrence or New CancerLate Effects

Overall Physical HealthFunctional Activities

Strength/Fatigue/PainFertility

Social Well BeingRoles and Relationships

Education/Work/FinancesAffection/Sexual Function

Appearance/Isolation

Psychological Well Being

Control Fear of Recurrence Anxiety Depression

Enjoyment

Spiritual Well BeingMeaning of Illness

ReligiosityTranscendence

HopeUncertainty

Inner Strength

CancerSurvivorshi

p

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

Canadian Cancer Statistics

0-14 years

Others20%

Neuro8%

Lymphomas

11%

Brain19%

Leukemia31%

Bone, Soft tissue

11%

15-24 years

other38%

Thyroid7%

NHL7%

Brain10%

Germ cell15%

HD16%

Melanoma

7%

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 REGISTRYSurvivor Cohort, Patient ID, Diagnosis, Death Follow-up

CANCER CENTRES,CHILDREN’S HOSPITALCancer Treatment Data

VITAL STATISTICSSibling Cohort

EDUCATION MINISTRIESEducation Data

MEDICAL INSURANCE PLAN

Health Utilization Data,General Population Sample

CAYACS SURVIVOR RESEARCH RESOURCE

Development of outcome indicators, analysis files

I. Health Outcomes

II. Health Care Outcomes

III. Education Outcomes

IV. Income and Employment

V. Knowledge Translation

BC CANCER AGENCYOncology Scheduling,

Screening Data

PHARMANETPrescription Drug Info

STATCANIncome and Employment

Info

BC C/A/YA Cancer Survivors

OutcomesPatient:

– 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

Controls (n=8386)

CNS Tumours (n=166)

Leukemias (n=270)

Remaining Survivors (n=346)

Outcome No. % No. % ORadja No. % ORadj

a No. % ORadja

FSA meets expectations Numeracy Gr 4 836 68.2 5 29.4 0.2* 26 53.1 0.5* 41 59.4 0.7 Numeracy Gr 7 1255 66.1 13 38.2 0.3* 41 54.7 0.6* 53 58.9 0.7 Numeracy Gr 10 1024 52.6 9 25.0 0.3* 30 43.5 0.7 50 58.8 1.3 Reading Gr 4 799 65.2 5 29.4 0.2* 27 55.1 0.6 45 65.2 1.1 Reading Gr 7 1233 64.9 13 38.2 0.3* 40 53.3 0.6* 54 60.0 0.8 Reading Gr 10 1029 52.8 11 30.6 0.4* 32 46.4 0.7 42 49.4 0.9 Writing Gr 4 1006 82.1 9 52.9 0.2* 40 81.6 1.0 53 76.8 0.8 Writing Gr 7 1419 74.7 18 52.9 0.4* 52 69.3 0.8 65 72.2 0.9 Writing Gr 10 1212 62.2 16 44.4 0.4* 47 68.1 1.3 54 63.5 1.1 *significant at p=0.05

Educational Achievement

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 person-

years 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 RegistryBC Cancer AgencyBC Children’s HospitalBC College of PharmacistsMinistry of Health ServicesMinistry of EducationMinistry of Advanced EducationStatistics Canada

Website

www.cayacs.ca

Co-InvestigatorsDr. Paul Rogers, BCCHDr. Sam Sheps, UBCDr. Victor Glickman, UBCDr. Anne-Marie Broemeling, IHADr. Karen Goddard, BCCADr. Joan Hu, SFUDr. Stuart Peacock, BCCADr. Sheila Pritchard, BCCHDr. Rod Rassekh, BCCHDr. Linda Siegel, UBCDr. John Spinelli, BCCADr. Scott Tyldesley, BCCADr. Elaine Wai, BCCADr. Sharon Allan, BCCA

BC C/A/YA Cancer Survivors

Acknowledgements (2)

Funders

Canadian Cancer Society (CCS) Research InstituteCCS BC&Yukon Canadian Centre for Applied Research in Cancer ControlCanadian Breast Cancer Foundation (BC&Yukon)

PI mmcbride@bccrc.ca

Research Team

Shebnum Devji Laura Game Nelson Ha Maria Lorenzi Miranda TsonisRita Parmar Sharon RelovaYang Zhang

BC C/A/YA Cancer Survivors