Cancer Survivorship:Research and Practice

Dr. Amanda Ward, Cancer Rehabilitation, Sociobehavioural Research Centre, 

BC Cancer Agency

1. Defining survivorship2. Overview of research and practice3. BCCA/SRC projects4. Discussion

‘Disease Free’Remission

Managed Chronic or Intermittent

Disease

Treatment Failure

Recurrence/ Second Cancer

Treatment with Intent to Cure

Palliative Treatment

Diagnosis and Staging

DeathSurvivorship CareLate effects management and surveillance for recurrence and second cancers

From diagnosis until end of life

Survivorship

Quantity:one million survivors in Canadagrowth rate = 2.5% year5 yr survival rate = 60%

Quality:75% survivors have health problems>50% live with chronic painUp to 45% report emotional distress

Areas of Need

Physical

PracticalSpiritual

Social

Emotional

IndividualInformational

Individual level: physical problems, psychosocial adjustment, practical concerns

Population level: changes over time (patterns), identify high‐risk subgroups, co‐morbidities

System level: service availability, resource allocation, care strategies, policy implementation

Optimal Survivorship Care?

The fundamental question for living beyond cancer is how the optimal care should be delivered, by whom, in what setting, to what guidelines and best practices? 

(Rowland 2006)

Recommendations

• Awareness and Advocacy• Standards and Guidelines• Screening and Assessment Tools• Referral Pathways and Care Plans• Surveillance and Prevention of second cancers and other late effects– Interventions/Programs– Promotion of healthy behaviours

• Research Evaluation: monitoring of outcomes to guide clinical practice

Barriers?

Practice• No uniform, evidence‐based guidelines• No care plans: unstructured continuity of care• Lack of understanding about roles and responsibility

Research• Limited tools to assess needs and outcomes• Deficit in evidence‐based research to guide practice

Vision and Leadership in Survivorship

Practice Development and Application

Generation of Evidence Based Research

Recognition of ImportanceAwareness and Receptiveness

Health Practice PriorityInvestment and Sustainability

Discovery

Clinical Validation

PopulationApplication

Research and Practice Model

Initiatives

Practice and Research

• Independent/local 

• Provincial

• National

• International

Provincial (BCCA)

• Medical follow‐up– Clinic: paediatric & adolescents

• Education & resources: Nursing

• Patient & Family CounsellingSupport Groups, Vocational Rehab, Resources 

Intervention: Cancer Transitions Program

• Prevention: health promotion

• Links to community based organizations 

National

Cancer Agencies/ Community‐based Organizations Programs, workshops, PF counselling, support gps, rehabilitation servicesPrincess Margaret Hospital: Breast Cancer Survivorship Program/Clinic 

‐ Clinical assessment and care planning‐ Website calendar: programs etc. ‐ Rehabilitation clinic ‐ Community engagement‐ Research

International

• UK

National initiative –improve services/research

• USA

Cancer Centres (LAF), physical & psychosocial care

Research

Imperative• > number of survivors• Problems post‐treatment• Opportunities to improve quality of life• Challenges for continuity in care• Potential to reduce system costs• Limited research in this area• Research advancing practice

Research 

National

• National Invitational Cancer Survivorship Workshop, 2008

• Pan‐Canadian Invitational Workshop, Vancouver, 2009

• Canadian Cancer Research Alliance, Toronto, 2010

• Research Consortium Meeting, Vancouver, 2010

International

• Workshop, MASCC, Vancouver, 2010

Research Priorities

Health services research• Operational Models of CareClinical research• Effective InterventionsBiological research• Mechanisms underlying long‐term

late effectsPopulation research• High risk sub‐groups: needs and

characteristics

Tool Development

Data Collection

Measuring Outcomes

Research Question?

What are the risk factors that predispose a survivor to recurrence or second primary?

Biological Psychosocial

Research Priorities Practice

Survivorship Research Program

Measurement/ToolDevelopment

Needs/Characteristics of Unique Pop

Evaluation of EffectiveModels of Care

Development of Effective Interventions

Mechanisms Underlying

Long-term Effects

SurvivorshipDatabase

NavigationSurvivorship Care Plans

InterventionsCancer

TransitionsEmpower

Screening TargetOutcomes

2008 ‐ 2012   Cancer Transitions

2010 ‐ 2012   Empower

2010 ‐ 2012   Survivorship Care Plans

2008 ‐ 2012

Education & support • Life Beyond Cancer• Exercise• Emotional Health• Nutrition• Medical Management

Self‐management: practical tools to encourage goal setting for physical and emotional well‐being

CBO: Community Based OrganizationCBOBarrie, ONGildaʹs ClubCancer CenterSaskatoon, SKSaskatchewan Cancer AgencyCancer CenterTrail, BCKootney Boundary HospitalCancer CenterCape Breton, NSCape Breton Cancer CentreCancer CenterSudbury, ONSudbury Regional HospitalCancer CenterVancouver, BCBC Cancer Agency‐ VCCCancer CenterWinnipeg, MBCancer Care ManitobaCancer CenterVanderhoof, BCNorthern Health‐ St. Johnʹs HospitalCancer CenterHalifax, NSCapital Health Cancer CentreCBOOttawa, ONOttawa Regional FoundationCBOMontreal, QCHope & CopeCBOToronto, ONWellspring

Cancer CenterPrince George, BCNorthern Health

Cancer CenterVictoria, BCBCCA‐ Vancouver Island

Organization TypeLocationSite

Demographics and Medical HistoryAge = 55

7 months post treatment

White (90%), Female (90%), Breast (58%)

Married (65%), Bachelors (50%)

Retired/unemployed (40%),  > $40,000 (70%)

Colorectal, lymphoma, prostate, lung (5 – 10%)

Co‐morbid conditions (60%)

N = 116

Measuring Outcomes

-5 0 5 10 15 20 25

Avoid fat as flavouring

Substitute lower fat products

Replace with fruits andvegetables

Replace meats

Increase fruits and vegetables

Substitute with higher fiber

Whole grains

Modify meats

Overall

Mean improvement (%)

3 months6 weeks

*

* p< 0.05

*

*

*

*

**

*

Eating Patterns Physical Activity

-10 0 10 20 30 40 50 60

Total physical activity

Low

Moderate

High

Mean improvement (mins/week)

3 months6 weeks

*

* p<0.05

Physical Activity

*

Measuring Outcomes

*

*

*

*p < 0.05

0 5 10 15 20 25 30 35 40

Physical functioning

Physical accomplishment

Bodily pain

General health

Vitality

Social functioning

Emotionalaccomplishment

Mental health

Mean improvement (%)

3 months6 weeks

**

**

*

*

*

*

Impact of Cancer Health Related Quality of Life

*

*

0 5 10 15 20

Negative body image

Negative self-evaluation

Negative outlook

Life interferences

Health worry

Mean improvement (%)

3 months6 weeks

*

* p < 0.05

*

*

*

Program Materials

Group Topics

0

10

20

30

40

50

60

70

80

90

100

CancerTransitionsParticipantWorkbook

Exercise Log Food Diary Action Plan The Road toSurvivorship:Living After

CancerTreatmentBrochure

LIVESTRONGCancer

Survivors HealthJournal

LIVESTRONGCancer

Survivor'sMedical

TreatmentSummary

%

Program Materials

57How you feel when others express fear, sadness, or anger

10

58Encouraging each other to be more assertive

9

62One’s accomplishments8

65Confronting difficult problems and fears7

68Direct advice about physicians, treatments, side effects

6

73Recreation5

74Details of treatment or side effects4

78Communication with physicians and medical personnel

3

79Access to resources for coping with cancer2

81Thinking positively1

Overall %Overall Ranking

1 to 10

Most frequently discussed group topics

0

10

20

30

40

50

60

70

80

90

100

Session 1 Session 2 Session 3 Session 4 Session 5 Session 6

Attendance %

Attendance

Empowerment for Survivorship

Emotional Well‐Being: Coping and Communication

Medical Management, Practical Issues, and Finding Meaning

2010‐2012

Demographics• Age = 56

• Survivor = 8.5m post treatment

• White (93%), Male/Female (50%)

• Married (60%)

• Retired/home (42%), full‐time (25%), part‐time (17%), sick/disability (16%)

• Supporting: Breast survivor (67%)Recruitment and evaluation ongoing

Delivering Cancer Survivorship Care to Rural and Remote Communities in

Northern British Columbia2010 - 2012

Survivorship Care Plan– Treatment summary

– Schedule of follow‐up appointments 

– Potential side effects 

– Symptoms of recurrence

– Healthy lifestyle choices

– Directory of supportive care services

– Additional resources

Determine unmet needs of survivors– Six partner communities– Health care provider & survivor

Develop and pilot survivorship care planDelivery methods– Navigation model– Self‐management model (self‐directed)

Research Evaluation– Pre and post‐evaluation– Feasibility of effective delivery– Measurable Outcomes for cancer survivors– Impact on health care system

Dawson Creek

Smithers

Terrace

Vanderhoof

Takla Landing

Tsay Keh Village

Future BCCA Priorities

• Inventory of current survivorship activities• Implement post treatment standards & guidelines• Implement and evaluate screening for distress• Screening & Prevention: recurrence/second primary• Create interdisciplinary research activity/ teams• Liaise survivor advocacy groups to align priorities• Establishing an Endowed Chair in Cancer Survivorship• Recruiting for a Survivorship Program Coordinator• Building a Canadian Consortium for Survivorship Research

Awareness and Receptiveness

Investment and Sustainability

Thank you!

Questions?

Discussion