Adult cancer survivorship

Jennifer M. Jones, PhD

Director of Research, Cancer Survivorship Program and

Centre for Health Wellness and Cancer Survivorship (ELLICSR)

Princess Margaret Cancer Centre, UHN

Scientist, Ontario Cancer Institute

Associate Professor

Dept. of Psychiatry, Faculty of Medicine

Dalla Lana Faculty of Public Health

University of Toronto

• No conflicts to declare

Cancer: Epidemiological Factors

• average 2/3 of Ca patients can now expect long term survival

• over the next 20yrs the % of person’s aged 65+ years will nearly double in North America to 20% of the population

• doubling of the number of individuals living with a personal hx of cancer by 2050

Bac

kgro

un

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Canadian Cancer Statistics 2014

Bac

kgro

un

d

96%

64%

88%

Challenges Facing Cancer Survivors

• almost all major types of Ca tx can result in side-effects that

can impair well-being, physical and psychosocial functioning

and overall quality of life and may persist after treatment ends

• new late-effects may also manifest months or even years after

treatment ends

• common and numerous, but knowledge regarding exact

incidence, prevalence, and risk factors remains limited

• can be further complicated by pre-existing risk factors such as

older age, pre-existing co-morbidities, genetic risks, and

behavioural and lifestyle factors

Can

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Physical Effects and Wellbeing

• at risk of local and distant recurrence and second primary cancers

• tx can affect almost all body systems and result in long-term and

late physical effects

• functional limitations, pain, fatigue, neuropathy, sleep

disturbances, sexual dysfunction, cognitive impairments,

infertility, cardiac and respiratory dysfunction

• report more limitations in their activities of daily living than controls

without a cancer history, even after controlling for known risk factors

Ph

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Physical Performance Limitations and

Participation Restrictions

• 1999–2002 National Health and Nutrition Examination Survey

• Physical performance limitations were 1.5–1.8 times (53% versus

21%) and participation restrictions 1.4–1.6 times (31% versus 13%)

more prevalent in cancer survivors than in those with no cancer

history.

Pro

po

rtio

n

Pro

po

rtio

n

0.9

0.8

0.7

0.6

0.5

0.4

0.3

0.2

0.1

0

No history of cancer

< 5 year survivor

5+ year survivor

0.9

0.8

0.7

0.6

0.5

0.4

0.3

0.2

0.1

0

No history of cancer < 5 year survivor 5+ year survivor

20-39 40-49 50-59 60-69 70+

Age in years

20-39 40-49 50-59

Age in years

60-69 70+

FIGURE 3. Number of physical performance limitations re- ported among adult participants in NHANES 1999–2002.

FIGURE 4. Proportion of those with participation restrictions reported among adult participants in NHANES 1999–2002.

Ness et al. Ann Epidemiol 2006;16:197–205.

Sedentary behaviour:

English Longitudinal Study of Aging

0%

2%

4%

6%

8%

10%

12%

Sedentary

11%

7%

Cancer Group(2-4 yrs post-tx)n=433

Comparisongroup n=4713

Williams et al., Br J Cancer 2013;108:2407-2412

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Long-term symptoms in cancer survivors:

Systematic Review

• Systematic review 2000-2008

• prolonged fatigue, cognitive limitations, sleep

problems,pain, and sexual function are consistently

present in heterogeneous cancer survivors following

primary treatment

• symptoms are prevalent throughout the trajectory of

survivorship up to 10 years post primary tx, across

multiple and diverse types of cancer

• survivors exposed to various treatments experience

these same symptoms

Int’l. J. Psychiatry in Medicine 2010;40:163-181

Fatigue: Breast, Prostate and Colorectal

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Sign Fatigue (<34)

31%

27% 29%

6-18 mon

24-42 mon

60-78 mon

Jones JM et al. J Clin Oncol 30, 2012 (suppl; abstr 9131).

n=1294

Ph

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Disability and Fatigue

30.3%

91.4%

p<0.0001 Jones JM et al. J Clin Oncol 30, 2012 (suppl; abstr 9131).

n=1294

Ph

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The impact of cancer-related fatigue on

breast cancer survivors (n=304)

0%

10%

20%

30%

40%

50%

60%

70%

80%

Fatigued (<34) Non-Fatigued

36%

64%

Ph

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cts

FACT-F cut-off x Social Difficulties (SDI)

Fatigued

Mean (+SD)

Non-

Fatigued

Mean (+SD)

p-value

Everyday Living (range 0-16)

5.3 +3.9 1.0+1.5

<0.0001

Money Matters (range 0-13) 4.2 +3.9

1.2+1.9

<0.0001

Self and others (range 0-15) 4.6 +3.4

1.7 +1.9

<0.0001

Total (SDI-16) (range 0-44) 14.2+9.6 3.9+4.0 <0.0001

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FACT-F cut-off X SDI cut-off (>10)

0%

10%

20%

30%

40%

50%

60%

70%

80%

Fatigued (<34) Non-Fatigued

57.0%

9.5%

p<0.0001

Ph

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FACT-F cut-off x Work Status

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Working Unemployed* On Leave**

56%

13%

22%

66%

4% 5%

Fatigued Group

Non-Fatigued Group

*p=0.006 **p<0.0001

Ph

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FACT-F cut-off x Presenteeism

0%

10%

20%

30%

40%

50%

60%

70%

80%

Better Same Worse

18%

39% 43%

40%

47%

13%

Fatigued Group

Non-Fatigued Group

p=0.001

Ph

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FACT-F cut-off x Health Care Utilization

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

73%

85%

29%

52%

26%

46%

68%

15% 19% 19%

Fatigued

Non-Fatigued

*p<0.01

Ph

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Urinary, bowel and sexual functioning:

Prostate Cancer Outcomes Study (PCOS)

0

5

10

15

20

25

30

Leaks > 2 timesday

Wears pad tostay dry

Diarrhea Bowel urgency

16

29

24

19

4 4

27

29

Comparison of 5-year PCOS survey responders on individual urinary, bowel, and sexual domain items* (n=1591 ages 55-74)

0

10

20

30

40

50

60

70

80

Erectile Difficulties

79

64

RP

EBRT

Potosky et al. J Natl Cancer Inst (2004) 96 (18): 1358-1367.

Ph

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cts

Bladder and bowel symptoms in cervical

and endometrial cancer survivors

0

10

20

30

40

50

60

Loss ofbladdercontrol

Daytimeurinaryleakage

Diarrhea Constipation Bloating

42

30 31

38

55

10 8

Survivors

Controls

Donovan et al Psycho-Oncology 2014; 23(6): 672-678

Ph

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Bone health: PrCa and ADT

Figure 1. Androgen deprivation therapy (ADT) has a significant effect on bone. In a sample of 390 men aged 54-89 years with local or regional prostate cancer who received ADT, the incidence of osteoporosis (T-score < -2.5) increased more than 2-fold. The percentage of men with normal bone mineral density (T-score > -1.0) correspondingly decreased. Morote J, et al. Urology. 2007;69:500-504

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Healthy Bone Behaviours

0%

20%

40%

60%

80%

Calcium ≥ 1200 Vitamin D ≥ 800 Exercise ≥ 150min/wk

77%

42%

30%

Healthy Bone Behaviours (HBBs)

• OP knowledge was low (x=9.6 4.4, potential range 0-19)

Nadler et al. BJU Int. 2013 Jun;111(8):1301-9.

Ph

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Routine Ordering of DXA scans

0

10

20

30

40

50

60

70

80

90

100

Baseline DXA Repeat DXA

32.5 36.6

n=156

Ph

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Nadler et al. BJU Int. 2013 Jun;111(8):1301-9.

Psychosocial Wellbeing

• significant psychosocial and economic consequences

• fear of cancer recurrence, uncertainty, anger, anxiety, emotional

vulnerability, issues related to sexual dysfunction and altered body

image are often common.

• changes in social outcomes such as relationships & community

involvement

• practical concerns in relation to returning to work and employment -

leading to significant employment and financial issues

Psy

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Depressive Symptoms

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

CESD >10

25% 22% 22%

6-18 mon

24-42

60-78

n=1294

Psy

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Anxiety x time

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

STAI-S >39

32% 33%

26%

6-18 mon

24-42

60-78

n=1294

Psy

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Psychosocial functioning: BrCa Survivors

05

10152025303540

Moderate-HighAnxiety

Moderate-HighDepression

Cancer-relatedPTSD

38

22

12

Psy

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• population-based cancer registry (n=1083) • X=47 months following dx • Lower QOL (P<.01) and higher levels of anxiety (P<.001) were observed in

cancer survivors compared to age-adjusted normative comparison groups.

Mehnert and Koch. J Psychosom Res 2008; 64(4):383-91.

Fear of Cancer Recurrence

• Systematic review n=130 (Simard et al 2013)

• Considered as one of the top concerns and most

frequently endorsed unmet need

• across different cancer sites 22–87% reported moderate

to high degree and 0–15% reported high levels of FCR.

• Remains stable over time

• Predictors: age, presence or severity of physical

symptoms, psychological distress, and quality of life or

functioning

• Carers have higher FCR than patients

Psy

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Fear of Recurrence and association with

health behaviours in young women

• N=218, ages 18-45 years, >1year post-tx

• 70% report clinical levels of FCR

• Associated with increase in:

• Unscheduled visits to GP

• Frequency of breast self-exams

• Use of CAM

• Use of counselling and support groups

• But lower participation in medical monitoring

(mammograms, ultrasounds clinical exams)

Thewes et al. Support Cancer Care 2012;20:2651-2659.

Psy

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Return to Work

• ~ ½ of cancer survivors are < 65

years of age

• tx can impact employment status and

choices = lost earnings and health

insurance

• Systematic Review: N=64 studies

• Mean duration of absence from work

=151 days

• high proportion of patients

experienced at least temporary

changes in work schedules, work

hours, wages and a decline in work

ability compared to non-cancer

groups.

% of patients who returned to

work after a Cancer dx

0

10

20

30

40

50

60

70

80

90

6months

12months

24months

40

63

89

Psy

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Mehnert A. 2010; Crit Rev Oncol Hematol. 2011;77:109-130

Employment Pathways in Cancer Survivors

• N=1433, ages 25-62, all cancer types (except skin and

Stage IV at dx),1-5 yrs post dx

• 41% males/39% females stopped working during tx

• 13% quit work in the first 4-yrs of survivorship for Ca

related reasons - 5% fail to return, 3% quit after

returning, and 5% quit after working through tx

• 16% and 21% reported limitations in ability to work that

was related to Ca

Psy

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Short et al., Cancer 2005:103:1292-301

Essential Components of Survivorship Care

• Prevention of recurrence and new cancers, and of other late effects

• Surveillance for cancer spread, recurrence, or second cancers;

assessment of medical and psychosocial late effects

• Intervention for the consequences of cancer and its treatment

• Coordination between specialists and primary care providers to

ensure that all of the survivors health needs are met

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From:

2006 IOM report From Cancer Patient to Cancer Survivors: Lost in Transition

2010 Canadian Guideline on Organization and Structure of Survivorship Services and Psychosocial-Supportive Care Best Practices for Adult Cancer Survivors

Intervention: Cancer Rehabilitation

• Pain

• Fatigue

• Deconditioning

• Reduced physical strength

• Reduced range of motion of joints

• Decreased cardiovascular capacity

• Lymphedema

• Bone Loss

• Mood disorders including depression and anxiety

• Decreased work productivity

• Decreased social functioning

• Heart disease (future)

• Diabetes (future)

• Second malignancies and recurrence of primary malignancy

Adverse effects of cancer treatment that may be reduced with Rehab Intervention

“Cancer rehabilitation, involves helping a person

with cancer to help himself or herself to obtain

maximum physical, social, psychological, and

vocational functioning within the limits imposed

by disease and its treatment”

(Crome)

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• A coordinated, comprehensive interprofessional cancer

rehabilitation model provides many conceptual

advantages including treating chronic and late effects of

cancer, managing comorbid conditions, and focusing on

prevention

Intervention: Cancer Rehabilitation C

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Intervention: Self-management

• Self-management is the active participation by people in their own healthcare.

• Self-management incorporates:

• health promotion and risk reduction

• informed decision making

• following care plans

• medication management

• working with health care providers to attain the best possible care and to effectively negotiate the often complex health system.

National Chronic Disease Strategy. National Health Priority Action Council www.nhpac.gov.au

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Self-Management: Cancer Specific Definition

“Awareness and active participation by the person in their recovery, recuperation, and rehabilitation,

to minimize the consequences of treatment, promote survival, health and well-being.”

The Macmillan Cancer Support self-management work stream; National Cancer Survivorship Initiative (NCSI, 2009)

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• people who are healthier, younger, more educated and wealthier are more likely to be able to assume this new role as active participants in their health care.

• converse is also likely that those who do not participate — for whatever reason — will benefit less.

• efforts to ensure that all people are able to engage positively in their health and health care will not succeed as long as their difficulties in effectively participating are not addressed.

Challenges to self-management C

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Self

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Survivorship@thePrincessMargaret

ELLICSR Strategic Priorities

Our platforms are:

Education

Clinical Care

Research & Innovation

Our execution requires:

Motivation of people

Support for survivors

Sustainable implementation

Integration of programs

Operational excellence

Organizational sustainability

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Centre for Health, Wellness and Cancer

Survivorship (ELLICSR) Activity Facility

Research • Workspaces

• Observation

area

Collaboration • Large meeting

rooms with

telecom

support

Clinical programs • Consult Rooms

Patient programs

• Exercise

• Diet

• Social support

• Gym

• Kitchen

• Living Room

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• Opened June 2010

• Houses research & clinical team

• self-management facilities

• Infrastructure-blends physical and virtual spaces

ELLICSR: Vision, Mission and Goals

Vision: To revolutionize the cancer experience

Mission: To maximize the quality of life, health & wellness of all who are

impacted by cancer

Goals (HEAT):

Harness the power of survivor communities

Enable survivors1 to become empowered experts in the

management of their health & wellbeing

Accelerate research & innovation in survivorship programs &

services

Transform care by integrating evidence-based self-management

support

1 A cancer survivor is defined to be anyone who is touched by cancer, including patients, families, friends, and caregivers

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Consortium’s Objectives:

• To develop a strong body of cancer survivorship

knowledge in Canada

Guiding Principles:

• promote the validity and reliability of research findings,

thus promoting their generalizability into policy and

practice in a variety of care settings.

• prevent duplication of research efforts in Canada &

increase system efficiency through collaboration

• promote Canadian research findings internationally, and

incorporate survivorship research, learning and

knowledge from other jurisdictions into the Canadian

context

• Be a respected reference body in the field of cancer

survivorship research and knowledge exchange

Canadian Cancer Survivorship Research

Consortium (www.ccsrc.ca) C

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Research Priorities for Cancer Survivorship

1. Evaluation of effective models of care

2. Development of effective supportive care

interventions

3. Mechanisms underlying persistent and long-term

physical and psychosocial effects

4. Identification of needs and characteristics of at risk

and unique populations

5. Knowledge translation for program implementation

and evaluation

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