Don’t miss our upcoming webinars. Subscribe today! About this webinar:The importance of Cancer Rehabilitation The diagnosis and treatment of cancer can result in chronic side effects which interfere with a person’s ability to work, engage socially, and do daily activities. Awareness and understanding of cancer rehabilitation have increased greatly over the past decade. However, access to rehabilitation services remains limited across Canada. There is an urgent call to action to invest in systems and services that can promote the recovery and well-being of cancer survivors. This includes the early identification of physical side effects and the development of effective cancer rehabilitation treatments that can be supported and maintained by our health care system.About This Presenter:Jennifer M. Jones, PhDDr. Jennifer Jones is the Butterfield Drew Chair in Cancer Survivorship Research and the Director of the Cancer Rehabilitation and Survivorship Program at the Princess Margaret Cancer Centre. In addition, she is a Senior Scientist at the Princess Margaret Research Institute and an Associate Professor in the Department of Psychiatry (primary) and the Dalla Lana School of Public Health (cross-appointment) at University of Toronto.Dr. Jones’ most recent scholarly and professional activities have clustered around Translational research to inform clinical survivorship care. This clinical research platform specifically focuses on examining new approaches to predict, prevent and manage long-term adverse effects of cancer and its treatment and evaluating innovative models of follow-up care and support for the growing number of cancer survivors. View the Video: https://bit.ly/importanceofcancerrehabyoutube Follow CCSN on social media: Twitter - https://twitter.com/survivornetca Facebook - https://www.facebook.com/CanadianSurvivorNet Instagram: https://www.instagram.com/survivornet_ca/ Pinterest - https://www.pinterest.com/survivornetwork

2. The Importance of Cancer
Rehabilitation
Jennifer M. Jones, PhD
Director, Cancer Rehabilitation & Survivorship Program
Butterfield/Drew Chair in Cancer Survivorship Research
Princess Margaret Cancer Centre, UHN
Senior Scientist, Ontario Cancer Institute

3. DISCLOSURE
Relevant relationships with commercial entities
None
Potential for conflicts of interest within this
presentation
None
Steps taken to review and mitigate potential
bias
N/A

4. Cancer Survivorship by numbers
Over 2 million people are living with a
personal history of cancer in Canada
Canadian Cancer Statistics 2018

5. Looking forward…
• Aging population= sign increase of the number of
individuals living with a personal history of cancer

6. The good news…
• Mortality rates have dropped significantly
– tobacco control, early detection and better treatments
• Five-year age-standardized RSR for cancers combined is 63%
when measured from the date of diagnosis
– increases to 81% when measured among those who survived the first
year after a cancer diagnosis.
Cancer
Survivorship

7. ‘Disease Free’
Remission
Managed Chronic or
Intermittent Disease
Treatment Failure
Recurrence/ Second
Primary
Treatment with
Intent to Cure
Palliative Care
Diagnosis and
Staging
Death
Survivorship Care
Cancer Survivorship
Cancer
Survivorship

8. Survival…but at a cost
Treatments
“Unlike other chronic diseases such as diabetes or arthritis where
disability is commonly caused by the disease process itself, short
and long term disability associated with cancer is often caused
more by treatment than the disease itself.” Short et al 2008

9. Challenges Facing Cancer Survivors
• 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 last after treatment
ends (persistent treatment effects)
• new side-effects may also manifest months or even
years after treatment ends (late treatment effects)
• can be further complicated by pre-existing risk factors
such as older age, pre-existing co-morbidities, genetic
risks, and behavioural and lifestyle factors
• Survivorship experience is HIGHLY INDIVIDUAL
Why

10. Physical Effects
• 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 effects
– Cardiotoxicity, lymphedema, bone loss, pain, fatigue,
cognitive impairments, neuropathy, functional
limitations, sleep disturbances, sexual dysfunction,
bladder/bowel, infertility
• symptoms often co-exist and are worsened by
comorbidities and may be exacerbated by age-related
processes

11. Breast Prostate Lung Sarcoma H&N
Impairment
Severity
→
Lymphedema,
Shoulder
dysfunction, Body
image
Erectile dysfunction,
Urinary incontinence
Dyspnea
Limb dysfunction,
Amputation
Swallowing
dysfunction, Speech
disorder
Fatigue, Pain,
Neuropathy,
Radiation fibrosis
Deconditioning,
Psychological
adjustment
Example

12. Health Status and Disability (NHIS Survey)
0%
10%
20%
30%
40%
50%
60%
Fair/Poor health > 1 limitations of
ADL
> 1 functional
limitation
Unable to work
30%
11%
58%
17%
11%
3%
29%
5%
Cancer Hx n=4878
No Cancer Hx n=90,737
Hewitt et al. 2003 J Gerontol A Biol Sci Med Sci (2003) 58 (1): M82-M91
Physical
Effects

13. Cancer-related fatigue
• Majority of patients will experience some level
of fatigue during their course of treatment.
• ~30% of patients will endure persistent fatigue
for a number of years after treatment
• The most prevalent and distressing long-term
effects of cancer treatment, significantly
affecting patients' quality of life

14. Psychosocial Wellbeing
• patients and their families also face 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, communication,
or community involvement
• practical concerns in relation to returning to work, employment
and insurance discrimination, health and life insurance
implications, leading to significant employment and financial
issues
• Typically, these conditions are underdiagnosed and undertreated,
despite the availability of effective psychosocial and drug
interventions

15. Prevalence and severity of physical, emotional and practical concerns
after completing cancer treatment – 2016 reporting year
Data source: Experiences of Cancer Patients in Transition study (2016).

16. Reasons for not seeking help for physical, emotional or practical
concerns after completing treatment — 2016 reporting year
Percentages reflect total number of times a certain response was selected regardless of whether a respondent checked off one or more responses.
Base population excludes respondents who had no concerns and those who sought help for their concerns.
Data source: Experiences of Cancer Patients in Transition study (2016).

17. Institute of Medicine (IOM) Findings:
Survivorship Care
• a neglected phase of the cancer care trajectory
• cancer recurrence, second cancers, and
treatment late effects concern survivors
• Survivors may:
– be unaware of risks
– have no plan for follow-up
• cancer care is often not coordinated
• providers lack education and training
• few guidelines for follow-up care
• models of survivorship care not tested
Hewitt M, Greenfield S, Stovall E, eds. From Cancer Patient to Cancer Survivor: Lost in Transition.
Washington, DC: National Academies Press; 2006.

18. IOM Essential Components of Survivorship Care
Prevention of recurrence and
new cancers, and 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
Cancer
Survivorship

19. 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
Comprehensive cancer
rehabilitation focuses on
prevention and treatment of
immediate, persistent or late
effects of cancer and
treatment, and the
maintenance of health to
optimize functional status and
QoL.

20. Cancer Rehabilitation in Canada
• Cancer rehabilitation can reduce functional limitations of cancer survivors
and improve social well-being, vocational functioning, and QoL.
• BUT despite the high prevalence of cancer-related impairments, treatment
rates, even for readily treatable physical impairments are low
• In North America, cancer rehabilitation programs are currently the exception
rather than the rule and when services do exist they are often underutilized
– In Canada, cancer care is generally still viewed and funded as an acute
condition and outpatient cancer rehabilitation is not funded.
– Services vary widely and are generally siloed services
• The increasing number of cancer survivors, along with the
growing evidence documenting the lasting effects of treatments,
serves as an urgent call to action — to invest in the recovery
and well-being of cancer survivors and help them get back to life
after cancer.

21. “The experience of entering the medical system for many cancer patients
is that they feel very good at the beginning, and then the treatments make
them profoundly ill and often disabled. When they are sicker and more
debilitated than they have ever been, they are discharged to follow-up
care, which may include such things as routine screening for cancer
recurrence, managing ongoing medications, and others, but this does not
generally include a multidisciplinary rehabilitation intervention. In effect,
the medical system creates a situation where high-functioning individuals
are given life-prolonging treatments and then left to struggle with how to
recover from the toxic adverse effects of these therapies”.
Silver and Gilchrist 2011
Intervention: Need for Cancer Rehabilitation

22. Canadian Cancer Rehabilitation (CanRehab) Team:
Improving the systematic identification, management,
and treatment of the adverse effects of cancer
Principal Investigators
Jennifer M. Jones (Toronto)
Kristin Campbell (Vancouver)
Jonathan Greenland (St. John’s)
Anthony Reiman (Saint John)
David Langelier (New Investigator)

23. • Adverse effects of cancer and its treatments often go
undetected and undertreated and can diminish survivors
ability to participate fully in work and life roles and reduce
overall quality of life (QoL)[
• Over the past 2 decades, there have been calls for
increased attention to the management of adverse effects
associated with cancer and its treatment with the goal to
minimize dysfunction and maximize well-being and QoL for
the growing number of cancer survivors, including those
living for years with metastatic disease.
Rationale

24. Overview of team goals,
research projects, and team
structure

25. The Canadian Cancer Rehabilitation Team (CanRehab) brings
together a large group of researchers, clinicians, and cancer
survivors at four cancer centres across Canada (BC, ON, NB,
NFLD) to conduct three linked projects focused on improving the
systematic identification of the adverse effects of cancer and its
treatments, increasing access to cancer rehabilitation using
innovative ehealth solutions, and extending reach to include a
growing population of cancer survivors, including those living
with incurable or metastatic cancer.
For a health care system to achieve optimal patient outcomes, it should aim to
control both the disease (i.e., cancer) as well as consequences of its
treatments and improve functioning for individuals.
Team Goals

26. Project One: REACH
Development and
implementation of an
electronic prospective
surveillance (ePSM)
model for cancer
rehabilitation
Project Two:
CaRE@Home
Pragmatic hybrid type 1
effectiveness-
implementation (E-I)
trial of a virtual cancer
rehabilitation program
Project Three: CaRE-
Advanced Cancer
Phase II randomized
controlled trial (RCT) of
group-based cancer
rehabilitation for people
with metastatic cancer
The CanRehab projects include breast, colorectal, head and neck, and lymphoma cancers.
Project One will develop and evaluate an online system to screen patients for cancer
related impairments and provide timely access to cancer rehabilitation services.
Project Two will test an 8-week on-line cancer rehabilitation program and examine
implementation factors.
Project Three will develop and assess feasibility of a rehabilitation program for patients
with stable metastatic cancer.
IDENTIFICATION ACCESS REACH

27. • Project 1
• REACH
IDENTIFICATION

28. Prospective Surveillance Model (PSM) includes routine assessment of
survivors’ needs and functioning post-diagnosis and continuing into post-
treatment survivorship.
Rationale:
1. increasing number of cancer survivors who can expect relatively
normal life expectancies, thus failure to treat cancer-related side
effects may adversely affect wellbeing and functionality for decades;
2. treatment‐related side-effects and impairments are common and
often go unreported and unrecognized
3. many treatment‐related impairments either can be prevented or
effects meaningfully ameliorated through early education, self-
management and comprehensive rehabilitation
4. evidence suggests few survivors receive such care.
IDENTIFICATION: Prospective Surveillance Model
(PSM)

29. • Implementing systematic screening within oncology clinics has been proposed as one
solution BUT oncology clinicians are challenged with busy clinics and often lack
knowledge of appropriate referral pathways or available services for a given problem
In order to address this:
• the PSM should include clear pathways to appropriate resources and interventions
• process should be personalized to tailor responses and dose based on the level of risk
and need and avoid a “one-size fits all” approach.
• Advances in use of technology provide a potentially cost-effective and patient-centered
solution for implementation of the PSM for cancer rehabilitation by enabling remote
monitoring of cancer survivors and the development of automated and personalized
linked-to-treatment responses but these have yet to be developed or implemented
Prospective Surveillance Model (PSM)

30. Project 1: Development and implementation of an
electronic prospective surveillance (ePSM) model for
cancer rehabilitation (REACH)
Project One is the development
and implementation of an
electronic prospective
surveillance system for cancer
rehabilitation, including
standardized remote screening of
common rehabilitation needs
and a risk stratified automated
response system to deliver
support and connect patients
with the level of rehabilitation
services they require and ‘just in
time’.

31. • Project 2
• CaRE@Home
ACCESS

32. • the evidence on cancer rehabilitation comes largely from trials utilizing face-
to-face delivery in a clinical setting.
• BUT cancer survivors face significant barriers (e.g., remote home locations,
cost, poor health) that can prevent access to cancer rehabilitation services
delivered in medical facilities
• distance-based eHealth interventions that use technologies have been
suggested as one way to reduce some barriers to accessing and providing
rehabilitation
• this approach well established in other chronic disease populations such as
heart disease and diabetes
• eHealth technology presents opportunities to increase access to cancer
rehabilitation in a virtual setting and has shown promise in increasing physical
activity and reducing specific psychosocial and physical symptoms in cancer
survivors.
ACCESS: Virtual Cancer Rehabilitation

33. Project 2: Pragmatic hybrid type 1 effectiveness-
implementation (E-I) trial of a virtual cancer
rehabilitation program (CaRE@Home)
Project Two will test the
effectiveness of a virtual
cancer rehabilitation program
for patients with identified
cancer-related impairments
and explore factors that
affect implementation.

34. • 8-week program for patient with identified disability/impairments
• Comprised of:
– weekly e-modules providing interactive education to promote self-
management skills;
– individualized progressive exercise prescription supported with mobile
application (Physitrack);
– wearable technology (Fitbit) to track activity & sleep;
– weekly virtual video check-in
CaRE@Home

35. • Project 3
• CaRE-Advanced Cancer
REACH

36. • advances in treatments have led to prolonged survival and a growing
population of individuals who are living long-term with metastatic solid
tumour cancer (advanced cancer)
• these treatments (and the cancer itself) lead to loss of physical function,
deconditioning, fatigue, pain and high levels of psychosocial distress
• improving this loss of functional independence and high symptom burden
is described by individuals with metastatic cancer as one of their highest
medical priorities
• cancer rehab interventions can address common impairments and reduce
the rate of functional decline in patients with advanced cancer.
• However, rehabilitation services and programs are underdeveloped and
underutilized in this population
• = urgent calls for the development and evaluation of proactive
multidimensional interventions to address the needs of this growing
population of cancer survivors who may continue to live years with their
impairments.
EXTENDING REACH: Cancer Rehab &
Advanced Cancer

37. Project 3: Phase II randomized controlled trial (RCT)
of group-based cancer rehabilitation for people
with metastatic cancer (CaRE-Advanced Cancer)
Project Three will test the
feasibility of a group cancer
rehabilitation program (in-
person and virtual) focused on
maximizing potential for
independent function and QoL
for individuals who are living
with incurable, locally
advanced or metastatic solid
tumour cancer.

38. CanRehab
Patient and Family
ADVISORY COMMITTEE

39. The Canadian Cancer Rehabilitation (CanRehab) Cancer
Survivor Advisory Committee plays a key advisory role as an
overarching committee and ensure cancer survivor
perspectives remain at the forefront, influencing the direction
of the research and implementation activities.
Overview
MANDATE
To build a sustainable, accessible, and equitable cancer care
system and to improve the care provided to cancer survivors
across Canada, it is essential that patients are integrated into
the research process in a meaningful and substantive manner.

40. jennifer.jones@uhn.ca