CCSN_June_06 2024_jones. Cancer Rehabpptx

About this webinar: This talk will introduce what cancer rehabilitation is, where it fits into the cancer trajectory, and who can benefit from it. In addition, the current landscape of cancer rehabilitation in Canada will be discussed and the need for advocacy to increase access to this essential component of cancer care.

1. Cancer Rehabilitation: What is is, who can benefit, and how available is it in Canada Jennifer M. Jones, PhD Director, Cancer Rehabilitation and Survivorship Program Butterfield/Drew Chair in Cancer Survivorship Research Senior Scientist, Princess Margaret Research Institute   Associate Professor, Dept. of Psychiatry Dalla Lana School of Public Health (cross-appointment) University of Toronto

2. Objectives I ntroduce what cancer rehabilitation Examine where it fits into the cancer trajectory Provide an overview of who can benefit from cancer rehab  Discuss the current landscape of cancer rehabilitation and the need for advocacy to increase access to this essential component of cancer care.

3. 39% Growing number of Cancer Survivors in Canada 45% of Canadians are expected to be diagnosed with cancer in their lifetime With an aging and growing population, the number of new cancer cases is increasing BUT the good news … Cancer-specific mortality has decreased for almost all types of cancer and there is a growing number of people with advanced and metastatic cancer who are living longer with their disease =a rapidly growing number of cancer survivors with ~2.5 million survivors expected in Canada by 2040 Number of cancer survivors increasing at 2x the rate of new diagnosis 26% Decrease in cancer-specific mortality between 1988-2023

4. Side effects of cancer The majority of people diagnosed with cancer will experience impairments to physical functioning and related disability These often go undetected/unreported and untreated CANCER SIDE EFFECTS Acute Persistent Late Social Roles Work Roles Quality of Life

5. a Acute refers to impairments that may occur during or immediately after treatment; long‐term refers to impairments that may begin during or immediately after treatment but persist for an extended period of time; and late‐onset impairments are those that may occur months or years after treatment is complete. Nekhlyudov et al. Cancer-related impairments and functional limitations among long-term cancer survivors: Gaps and opportunities for clinical practice. Cancer. 2022 Jan 15;128(2):222-229

6. Health Status and Disability in Cancer Ref: Hewitt et al. 2003 J Gerontol A Biol Sci Med Sci. 58 (1): M82-M91 Physical Effects

7. “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 Need for Cancer Rehabilitation

8. A call for action In 2017, the World Health Organization (WHO) initiated  Rehabilitation 2030  - a call to action to advance global access to high-quality rehabilitation as an essential health care service for individuals with noncommunicable diseases. This initiative emphasized that: Rehabilitation should be available for all the population and through all stages of the life course. Efforts to strengthen rehabilitation should be directed towards supporting the health system as a whole and integrating rehabilitation into all levels of health care. Rehabilitation is an essential health service and crucial for achieving universal health coverage. Given the acute, persistent, and late effects of cancer and its associated treatments, the WHO designated oncology as a priority area for this initiative.

9. What is cancer rehabilitation?

10. Cancer Rehabilitation A process to restore mental and/or physical abilities lost to injury or disease, in order to function in a normal or near-normal way. National Cancer Institute Medical care that should be integrated throughout the oncology care continuum and delivered by trained rehabilitation professionals who have it within their scope of practice to diagnose and treat patients’ physical, psychological, and cognitive impairments to maintain or restore function, reduce symptom burden, maximize independence, and improve quality of life in this medically complex population. Silver et al. 2015

11. What counts as rehab? 11 Level 1/2 Level 3/4

12. Who delivers cancer rehabilitation? Cancer rehabilitation is a multidisciplinary field with the goal of optimizing physical, social, emotional, and vocational functioning

13. Stepped Care for Cancer Rehab Alfano CM, Cheville AL, Mustian K. Developing High-Quality Cancer Rehabilitation Programs: A Timely Need. Am Soc Clin Oncol Educ Book. 2016;35:241-9. doi : 10.1200/EDBK_156164. PMID: 27249704.

14. Level I: General Conditioning Activities, Unspecialized Most people treated for cancer experience a decrease in aerobic fitness and muscle quality All people diagnosed with cancer should receive education and/or prescriptive counseling on progressive aerobic conditioning, resistance training, and the benefits of exercise in general. *preventative role recurrence, mortality, and risks such as cardiotoxicity Level II: General Conditioning Activities, Specialized For some people, there is a need for an exercise professional to provide some supervision . Community based programs (i.e. Wellspring, EXCEL, professional with some cancer experience) Level 1/2 General Conditioning Activities, Unspecialized General Conditioning Activities, Specialized

15. Level III: Impairment-Directed Care, Uncomplicated Rehab specialist treatment ( i.e OT, PT, RD, SLP). Cancer–related impairments that limit function but are uncomplicated by symptoms or other systemic concerns. Focuses on treating the impairment(s) to optimize function and also on increasing activity levels with the goal to move to Level 1/2   Level IV: Impairment-Directed Care, Complicated Specialist physician–directed evaluation and treatment (physiatrist) for patients with problematic symptoms or co-occurring impairments. Focuses on treating impairments, ongoing symptom management, and increasing activity levels to enable the survivor of cancer to safely transition to Level 1/2 when possible. Level 3/4 Impairment-Directed Care, Uncomplicated Impairment-Directed Care, Complicated

16. Where does cancer rehab fit into the cancer trajectory and who can benefit?

17. ‘ 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 Trajectory

18. Cancer rehabilitation across the treatment continuum Chowdhury RA, Brennan FP, Gardiner MD. Cancer Rehabilitation and Palliative Care-Exploring the Synergies. J Pain Symptom Manage. 2020 Dec;60(6):1239-1252 Dietz classification of cancer rehabilitation in the treatment continuum

19. Prehabilitation Everyone can benefit but target groups who may need more direct intervention include those who are frail, have comorbidities, or are in poor health (level 3/4) Before the beginning of acute treatment to optimize function in order to improve recovery and optimize treatment tolerability. U sually involves multidisciplinary interventions including physical conditioning, nutrition, psychosocial counseling. Lee K, Zhou J, Norris M, Chow C, Dieli-Conwright C. Prehabilitative Exercise for the Enhancement of Physical, Psychosocial, and Biological Outcomes Among Patients Diagnosed with Cancer. Current Oncology Reports. 2020 22. 10.1007/s11912-020-00932-9.

20. Restorative/Supportive Cancer Rehabilitation During and after treatment- impairment driven Cancer rehabilitation strategies are similar to those used in other conditions (i.e. cardiac rehabilitation) Typically takes a holistic approach rather than addressing each symptom separately Varied interventions, delivered by specific rehab professionals depending on the issue Incorporates self management skills teaching and health promotion efforts

21. Supportive Rehabilitation Individuals living with people with slowly progressive disease or chronic (usually hematological) malignancy. Focus to maximize function, independence, participation in life activities, and quality of life Includes teaching self management skills and compensatory strategies to increase self-care, accommodate impairments, and manage symptoms from ongoing disease.

22. Where are we now? The availability of cancer rehabilitation

23. Current landscape of Cancer Rehab Many oncology guidelines now include recommendations for cancer rehabilitation referral and interventions rehabilitation is a recognized component of oncology care BUT there is currently no comprehensive rehabilitation guideline or clinical pathway for cancer care. The availability of rehabilitation services for cancer patients remains limited in most countries It is estimated that only 1-18 in 200 cancer patients have access to cancer rehabilitation services These gaps in access have significant consequences, as timely and appropriate rehabilitation can improve functional outcomes, reduce symptom burden, and enhance overall quality of life for cancer survivors.

24. Cancer Rehabilitation in Canada Comprehensive cancer rehabilitation programs are still the exception in cancer care in Canada It is estimated that ~20 sites across the country offer some form of cancer rehabilitation programming . Less than 10 physiatrists who specialize in cancer rehabilitation Causes : The funding structure of cancer care remains focused on acute care and does not include outpatient rehabilitation where funding is available, it is often short-term (grants) and/or depend on charitable organisations and foundations There is a limited pool of rehab professionals with training/expertise in cancer rehab creates a challenge to developing a comprehensive cancer rehabilitation program with a multidisciplinary team = services are one-dimensional with a focus on treating symptom/impairments separately More research is needed to benefits and cost-savings and justify the ”ask”

25. ACRM blueprint to advance cancer rehab In 2019, the American Congress of Rehabilitation Medicine(ACRM) created a blueprint to advance cancer rehabilitation and proposed five steps:

26. Role of Advocacy Advocacy can take many forms including governmental lobbying, letter writing campaigns, social media, sharing personal stories Contact and lobby you local representatives and those who serve on relevant governmental committees. Partner with like-minded people who have relationships with “change makers”. Partner with patient and healthcare organizations and sponsor letter-writing campaigns to voice advocacy Share personal stories can help to humanize the nature of the suffering that is ongoing and faced by cancer survivors and help build support for change. Social media can be used to amplify your message Ask for and demand cancer rehab services “ tell the right story to the right person with the right data .”

27. Cancer rehabilitation is at a critical the number of cancer survivors in Canada is expected to double by 2040 Many will develop functional impairments or become disabled because of cancer or cancer treatment However, there remain significant gaps in the provision of rehabilitation services for patients with cancer in Canada and this contributes to a growing morbidity burden. We need a change.

28. Smith et al., 2020 It is challenging, if not impossible, to imagine a high-quality oncology care system that does not include rehabilitation service. Cancer rehabilitation has been reported to be an effective and efficient way to improve patient function, reduce symptom burden, and reduce resource utilization . Given that cancer patients’ life expectancies are consistently shown to be reduced worldwide when their diagnosis is associated with disability, rehabilitation must be considered an essential component to comprehensive cancer care . Smith SR, Zheng JY, Silver J, Haig AJ, Cheville A. Cancer rehabilitation as an essential component of quality care and survivorship from an international perspective. Disabil Rehabil . 2020 Jan;42(1):8-13. doi : 10.1080/09638288.2018.1514662. Epub 2018 Dec 21. PMID: 30574818.

29. “While we may be living clinically with no evidence of disease, we live with the evidence of the history of our disease every day. Like petrified trees or fossilized shells, cancer treatments leave permanent physical and psychological reminders of our cancer experience. As greater attention is being focused on the optimized management of long-term toxicities in cancer survivorship, my sincere hope is that there will be effort to educate cancer and non-cancer medical staff alike about the real physical and psychosocial adverse effects as well as advances in treatment that will both prevent development of long-term toxicity and yield better solutions for when they do occur. I hope better options will be available to all cancer survivors with all stages and all disease types in the not-so-distant future . I am OK, really, but I am not sure ‘otherwise healthy’ really applies to me .”

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