Cancer Survivorship: Research and Practice. Dr. Amanda Ward, Cancer Rehabilitation, Sociobehavioural Research Centre, BC Cancer Agency

Transcription

1 Cancer Survivorship: Research and Practice Dr. Amanda Ward, Cancer Rehabilitation, Sociobehavioural Research Centre, BC Cancer Agency

2 1. Defining survivorship 2. Overview of research and practice 3. BCCA/SRC projects 4. Discussion

3 From diagnosis until end of life Diagnosis and Staging Treatment with Intent to Cure Palliative Treatment Disease Free Remission Managed Chronic or Intermittent Disease Treatment Failure Recurrence/ Second Cancer Death Survivorship Care Late effects management and surveillance for recurrence and second cancers Survivorship

4 Quantity: one million survivors in Canada growth rate = 2.5% year 5 yr survival rate = 60% Quality: 75% survivors have health problems >50% live with chronic pain Up to 45% report emotional distress

5 Areas of Need Emotional Physical Social Individual Informational Spiritual Practical

6 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

7 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)

8 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

9 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

10 Research and Practice Model Vision and Leadership in Survivorship Discovery Practice Development and Application Clinical Validation Population Application Generation of Evidence Based Research Recognition of Importance Awareness and Receptiveness Health Practice Priority Investment and Sustainability

11 Initiatives Practice and Research Independent/local Provincial National International

12 Provincial (BCCA) Medical follow up Clinic: paediatric & adolescents Education & resources: Nursing Patient & Family Counselling Support Groups, Vocational Rehab, Resources Intervention: Cancer Transitions Program Prevention: health promotion Links to community based organizations

13 National Cancer Agencies/ Community based Organizations Programs, workshops, PF counselling, support gps, rehabilitation services Princess Margaret Hospital: Breast Cancer Survivorship Program/Clinic Clinical assessment and care planning Website calendar: programs etc. Rehabilitation clinic Community engagement Research

14 International UK National initiative improve services/research USA Cancer Centres (LAF), physical & psychosocial care

15 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

16 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

17 Research Priorities Health services research Operational Models of Care Clinical research Effective Interventions Biological research Mechanisms underlying long term late effects Population research High risk sub groups: needs and characteristics Tool Development Data Collection Measuring Outcomes

18 Research Question? What are the risk factors that predispose a survivor to recurrence or second primary? Biological Psychosocial

19 Survivorship Research Program Research Priorities Practice Measurement/Tool Development Survivorship Database Screening Target Outcomes Needs/Characteristics of Unique Pop Evaluation of Effective Models of Care Development of Effective Interventions Mechanisms Underlying Long-term Effects Navigation Survivorship Care Plans Cancer Transitions Interventions Empower

20 Cancer Transitions Empower Survivorship Care Plans

21 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

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23 Site Location BCCA Vancouver Island Victoria, BC Northern Health Prince George, BC Wellspring Toronto, ON Hope & Cope Montreal, QC Ottawa Regional Foundation Ottawa, ON Capital Health Cancer Centre Halifax, NS Northern Health St. Johnʹs Hospital Vanderhoof, BC Cancer Care Manitoba Winnipeg, MB BC Cancer Agency VCC Vancouver, BC Sudbury Regional Hospital Sudbury, ON Cape Breton Cancer Centre Cape Breton, NS Kootney Boundary Hospital Trail, BC Saskatchewan Cancer Agency Saskatoon, SK Gildaʹs Club Barrie, ON CBO: Community Based Organization Organization Type Cancer Center Cancer Center CBO CBO CBO Cancer Center Cancer Center Cancer Center Cancer Center Cancer Center Cancer Center Cancer Center Cancer Center CBO

24 Demographics and Medical History Age = 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

25 Measuring Outcomes Eating Patterns Overall 3 months 6 weeks p< 0.05 High Physical Physical Activity Activity 3 months 6 weeks p<0.05 Modify meats Whole grains Substitute with higher fiber Moderate Increase fruits and vegetables Replace meats Low Replace with fruits and vegetables Substitute lower fat products Total physical activity Avoid fat as flavouring Mean improvement (%) Mean improvement (mins/week)

26 Measuring Outcomes Impact of Cancer Mental health Health Related Quality of Life 3 months 6 weeks Health worry 3 months 6 weeks p < 0.05 Emotional accomplishment p < 0.05 Life interferences Negative outlook Negative self-evaluation Negative body image Mean improvement (%) Social functioning Vitality General health Bodily pain Physical accomplishment Physical functioning Mean improvement (%)

27 Attendance % % Attendance Session 1 Session 2 Session 3 Session 4 Session 5 Session 6 Program Materials Program Materials Cancer Transitions Participant Workbook Group Topics Exercise Log Food Diary Action Plan The Road to Survivorship: Living After Cancer Treatment Brochure Thinking positively Access to resources for coping with cancer Communication with physicians and medical personnel Details of treatment or side effects Recreation Overall Ranking 1 to 10 Most frequently discussed group topics Direct advice about physicians, treatments, side effects Confronting difficult problems and fears One s accomplishments Encouraging each other to be more assertive How you feel when others express fear, sadness, or anger LIVESTRONG Cancer Survivors Health Journal LIVESTRONG Cancer Survivor's Medical Treatment Summary Overall %

28 Empowerment for Survivorship Emotional Well Being: Coping and Communication Medical Management, Practical Issues, and Finding Meaning

29 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

30 Delivering Cancer Survivorship Care to Rural and Remote Communities in Northern British Columbia

31 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

32 Determine unmet needs of survivors Six partner communities Health care provider & survivor Develop and pilot survivorship care plan Delivery 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

33 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

34 Awareness and Receptiveness Investment and Sustainability

35 Thank you! Questions? Discussion