Adult cancer survivorship

Transcription

1 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

2 No conflicts to declare

3 Background 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

4 Background 96% 88% 64% Canadian Cancer Statistics 2014

5 Cancer Survivorship 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

6 Physical Effects 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

7 Proportion Proportion Physical Performance Limitations and Participation Restrictions National Health and Nutrition Examination Survey Physical performance limitations were times (53% versus 21%) and participation restrictions times (31% versus 13%) more prevalent in cancer survivors than in those with no cancer history No history of cancer < 5 year survivor 5+ year survivor No history of cancer < 5 year survivor 5+ year survivor Age in years Age in years FIGURE 3. Number of physical performance limitations reported among adult participants in NHANES FIGURE 4. Proportion of those with participation restrictions reported among adult participants in NHANES Ness et al. Ann Epidemiol 2006;16:

8 Physical Effects Sedentary behaviour: English Longitudinal Study of Aging 12% 10% 11% 8% 6% 7% Cancer Group (2-4 yrs post-tx) n=433 Comparison group n=4713 4% 2% 0% Sedentary Williams et al., Br J Cancer 2013;108:

9 Long-term symptoms in cancer survivors: Systematic Review Systematic review 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:

10 Physical Effects Fatigue: Breast, Prostate and Colorectal 6-18 mon mon 100% mon 90% 80% n= % 60% 50% 40% 30% 20% 31% 27% 29% 10% 0% Sign Fatigue (<34) Jones JM et al. J Clin Oncol 30, 2012 (suppl; abstr 9131).

11 Physical Effects Disability and Fatigue n= % 30.3% p< Jones JM et al. J Clin Oncol 30, 2012 (suppl; abstr 9131).

12 Physical Effects The impact of cancer-related fatigue on breast cancer survivors (n=304) 80% 70% 60% 64% 50% 40% 36% 30% 20% 10% 0% Fatigued (<34) Non-Fatigued

13 Physical Effects FACT-F cut-off x Social Difficulties (SDI) Fatigued Mean (+SD) Non- Fatigued Mean (+SD) p-value Everyday Living (range 0-16) < Money Matters (range 0-13) < Self and others (range 0-15) < Total (SDI-16) (range 0-44) <0.0001

14 Physical Effects FACT-F cut-off X SDI cut-off (>10) 80% 70% 60% 50% 40% 57.0% 30% 20% 9.5% 10% 0% Fatigued (<34) Non-Fatigued p<0.0001

15 Physical Effects FACT-F cut-off x Work Status 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 56% 66% 13% 4% 22% 5% Working Unemployed* On Leave** Fatigued Group Non-Fatigued Group *p=0.006 **p<0.0001

16 Physical Effects FACT-F cut-off x Presenteeism Fatigued Group 80% 70% Non-Fatigued Group 60% 50% 40% 30% 40% 39% 47% 43% 20% 10% 18% 13% 0% Better Same Worse p=0.001

17 Physical Effects FACT-F cut-off x Health Care Utilization 100% 90% 80% 85% Fatigued Non-Fatigued 70% 60% 73% 68% 50% 40% 46% 52% 30% 20% 10% 29% 15% 26% 19% 19% 0% *p<0.01

18 Physical Effects Urinary, bowel and sexual functioning: Prostate Cancer Outcomes Study (PCOS) Comparison of 5-year PCOS survey responders on individual urinary, bowel, and sexual domain items* (n=1591 ages 55-74) RP EBRT Erectile Difficulties 0 Leaks > 2 times day Wears pad to stay dry Diarrhea Bowel urgency Potosky et al. J Natl Cancer Inst (2004) 96 (18):

19 Physical Effects Bladder and bowel symptoms in cervical and endometrial cancer survivors Survivors Controls 10 0 Loss of bladder control 10 8 Daytime urinary leakage Diarrhea Constipation Bloating Donovan et al Psycho-Oncology 2014; 23(6):

20 Physical Effects Bone health: PrCa and ADT Figure 1. Androgen deprivation therapy (ADT) has a significant effect on bone. In a sample of 390 men aged 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:

21 Physical Effects Healthy Bone Behaviours OP knowledge was low (x= , potential range 0-19) Healthy Bone Behaviours (HBBs) 80% 60% 77% 40% 20% 42% 30% 0% Calcium 1200 Vitamin D 800 Exercise 150min/wk Nadler et al. BJU Int Jun;111(8):

22 Physical Effects Routine Ordering of DXA scans n= Baseline DXA Repeat DXA Nadler et al. BJU Int Jun;111(8):

23 Psychosocial Effects 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

24 Psychosocial Effects Depressive Symptoms 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 25% 22% 22% CESD >10 n= mon

25 Psychosocial Effects Anxiety x time 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% 32% 33% STAI-S >39 26% 6-18 mon n=1294

26 Psychosocial Effects Psychosocial functioning: BrCa Survivors 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 Moderate-High Anxiety Moderate-High Depression Cancer-related PTSD Mehnert and Koch. J Psychosom Res 2008; 64(4):

27 Psychosocial Effects 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

28 Psychosocial Effects Fear of Recurrence and association with health behaviours in young women N=218, ages 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:

29 Psychosocial Effects 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 months months months Mehnert A. 2010; Crit Rev Oncol Hematol. 2011;77:

30 Psychosocial Effects 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 Short et al., Cancer 2005:103:

31 Cancer Survivorship Care 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 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

32 Cancer Survivorship Care Intervention: Cancer Rehabilitation 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) 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

33 Cancer Survivorship Care Intervention: Cancer Rehabilitation 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

34 Cancer Survivorship Care 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

35 Chronic Disease: Self Management 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) 35

36 Chronic Disease: Self Management Challenges to self-management 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.

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38 A Centre for Innovation and Research 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

39 Providing Clinical Care & Support

40 A Centre for Innovation and Research 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 Opened June 2010 Houses research & clinical team self-management facilities Infrastructure-blends physical and virtual spaces Patient programs Exercise Diet Social support Gym Kitchen Living Room

41 A Centre for Innovation and Research 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 survivors 1 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

42 Cancer Survivorship Research Canadian Cancer Survivorship Research Consortium ( 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

43 Cancer Survivorship Research 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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