Prof/ Dr. Eva Grunfeld, MD, DPhil, FCFP Ontario Institute for Cancer Research
and Giblon Professor, University of Toronto
Coordination of survivorship care across sectors and survivorship
care plans in Canada
Toronto, Ontario
Outline of Presentation
1. Overview of the need for coordination of care across health care sectors
2. Review the interface between primary care and oncology care to provide quality care
3. Review of survivorship care plans as a tool to improve quality of care
4. Conclusions
The presentation will use examples from Canadian research and activities
2007: 172/day 2017: 228/day
Long-Term Cancer Survival (1975 -1999) in Canada
Age Standardized Relative Survival Ratios for Major Cancers
0 20 40 60 80 100
1975-79 1977-81 1979-83 1981-85 1983-87 1985-89 1987-91 1989-93 1991-95 1993-97 1995-99
Year of Diagnosis
5 year relative survival ratio (%)
Colorectal, Male Colorectal, Female Prostate Female Breast
Cancer Care Trajectory
Diagnosis and Staging
Treatment With Intent to Cure
Palliative Treatment
Death
Cancer-Free Survival
Managed Chronic or Intermittent
Disease
Treatment Failure
Recurrence/
Second Cancer
Start Here
Survivorship Care
Cancer prevalence by age
0.6% 0.9% 1.4%
2.2% 3.5%
5.4%
8.0%
11.3%
14.8%
17.8%
19.3%
18.0%
0.0%
5.0%
10.0%
15.0%
20.0%
25.0%
Percentage
30- 34
35- 39
40- 44
45- 49
50- 54
55- 59
60- 64
65- 69
70- 74
75- 79
80- 84
85+
Age
Number of comorbidities by age
6.4 4.6
21.1
13.6 8.8
22.5
19.2
15 18.4
20.1
16.9
12.7 12.5
16.4
16.1 12.8
24.3
38.6
55-64 65-74 75+
Age
Percentage
0 1 2 3 4 5
Severity of comorbidities by cancer site
45.5
55.3 53.6 52.2
46
38
31.2 30.6 29.8
31.6
27.6 27.3
29.8
32.9
29.3 28.6 17.3
10.3
13.3 16.1
17.3
20
25.4 28.8
7.4 2.9 5.5 4.4 6.8 9
14.2 14.1
All
Patients
Prostate
Breast
Gynecological Head and
Neck
Digestive System
Lung
Urinary System
Percentage
None Mild Moderate Severe
Survivorship Issues
Routine follow-up care for cancer
Surveillance for recurrence
Surveillance for late effects of treatment
Surveillance for new primary cancer
Psychosocial issues
Special concerns (social/economic/occupational)
General medical and preventive care
Outline of Presentation
1. Overview of the need for coordination of care across health care sectors
2. Review the interface between primary care and oncology care to provide quality care
3. Review of survivorship care plans as a tool to improve quality of care
4. Conclusions
Cancer Care Trajectory
Diagnosis and Staging
Treatment With Intent to Cure
Palliative Treatment
Death
Cancer-Free Survival
Managed Chronic or Intermittent
Disease
Treatment Failure
Recurrence/
Second Cancer
Start Here
Survivorship Care
Patient and Family PCP
Nurse
General Surgeon Oncologist(s)
Supportive Care Team (i.e. social worker, nutritionist, pharmacist)
Breast Cancer: Mix of Physician Visits
* P < 0.001 Source: Grunfeld et al, J Oncl Pract 2010
Physician Specialty
Follow-up Year
% of patients with at least one visit Year 2
(n=11,219)
Year 3 (n=10,026)
Year 4 (n=9,297)
Year 5 (n=8,624)
Primary Care Only* 8.0 12.3 17.3 23.0
Oncology Only* 8.8 7.7 7.5 6.4
Multiple 4.9 3.6 3.0 2.2
PCP and Oncology* 81.1 77.0 71.8 66.6
PCP and Medical 11.3 16.5 18.4 17.6
PCP and Radiation 7.5 8.2 9.2 9.3
PCP and Surgical 13.1 13.9 14.7 15.9
PCP and Multiple 49.2 38.4 29.5 23.8
% Never screened over 4 years
% Never screened over 4 years % Never screened over 4 years
% Never screened over 4 years
1. Females age 40+
2. Females age 20+
3. Age 50 to 74; FOBT, Barium enema, sigmoidoscopy or colonoscopy 4. Size of sample varies based on age/sex eligibility for screening modality
Screening
Index Cancer4 Breast
(n=11,219)
Hodgkin’s Lymphoma
(n=2,322)
Endometrial (n=3,473)
Colorectal (n=1,833)
Mammogram1 - 46.6 35.8 46.0
Pap2 50.7 37.0 - 63.2
Colorectal
cancer3 65.3 76.1 65.6 -
A Pre-
CA
CA DX
Off RX
1-2 Years Off RX
5 Years Off RX
__________ │……… ▬ ─►
┴ ┴
┬ ┬
│_____________________________________ ▬ ─►
B Pre-
CA
CA DX
Off RX
1-2 Years Off RX
5 Years Off RX
_________ │─ ─ ─ ─ ─ ─ ─ ─ ─ ─ ─ │─────────────── ►
↕a ↕b ↕c ↕c
│────────────────│─ ─ ─ ─ ─ ─ ─ ─ ─ ─ ► PCP
Communication Onc
PCP
Onc
a. Cancer diagnosis, stage and/or TNM classification, planned therapeutic approach, brief overview of chemotherapy, radiation therapy, and/or surgery.
b. Survivorship Care Plan: summary of cancer and cancer therapy, a list of potential late effects, up-to-date recommendations for monitoring for recurrence and late effects, contact information
c. Continued update with changes in surveillance recommendations and new information regarding potential late effects.
Oeffinger 2006
Models for Delivering Survivorship Care
Models for Delivering Survivorship Care Models for Delivering Survivorship Care
Models for Delivering Survivorship Care
Testing a Model of Primary Care Testing a Model of Primary Care Testing a Model of Primary Care Testing a Model of Primary Care Follow
Follow Follow
Follow----up of Breast Cancer Patients up of Breast Cancer Patients up of Breast Cancer Patients up of Breast Cancer Patients
STUDY YEARS METHODS SUBJECTS
Phase I
1991-1992 Focus Groups Patients (England)
1992-1993 Focus Groups Patients (England)
1992-1993 Survey GPs (England)
1992-1993 Survey Specialists (England)
Phase II 1993-1994 RCT (n=296) English Patients
Phase III 1997-2003 RCT (n=968) Canadian Patients
Phase IV 2007+ RCT (n=400) Canadian Patients
Percent Willing to Provide Exclusive Cancer Percent Willing to Provide Exclusive Cancer Percent Willing to Provide Exclusive Cancer Percent Willing to Provide Exclusive Cancer Follow
Follow Follow
Follow----up: up: up: up:
Results from a Canadian National Survey of PCPsResults from a Canadian National Survey of PCPsResults from a Canadian National Survey of PCPsResults from a Canadian National Survey of PCPs1 1 1 11Current experience providing exclusive follow-up most significant predictor of willingness.
Source: Del Guidice, Grunfeld, et al, 2009
Cancer ≤2yrs 3 to 5 yrs 10+ or never
Prostate 55.3 35.4 8.1
Colorectal 49.8 33.4 15.4
Breast 50.0 40.5 7.7
Lymphoma 42.0 41.6 15.4
Views on Primary Care Follow-up
% Agreeing Can1
PCP
UK2 PCP
UK2
Specialists
PCPs are better placed to provide psychological support 79.8 81.7 24.6 PCPs should be involved at an earlier stage in follow-up 63.7 - - PCPs have the skills necessary for follow-up 69.1 68.9 37.6 Patients will not be adequately reassured by PCP follow-
up
39.2 18.4 48.4
Patients expect to be followed by cancer specialist 71.7 63.5 85.7
1. Del Guidice, Grunfeld et al, 2009 2. Grunfeld, Mant et al, 1995
Usefulness of Various Modalities to Help Primary Care Physicians Provide Follow-up
Rank Modality %
1 Patient-specific standardized letter with guidelines 95.4
2 Printed guidelines 91.8
3 Expedited rates of re-referral 92.7
4 Expedited access to test for suspected recurrence 91.1 5 Ability to telephone\email specialist for advice 86.1
Source: Del Guidice, Grunfeld, et al JCO 2009
Outline of Presentation
1. Overview of the need for coordination of care across health care sectors
2. Review the interface between primary care and oncology care to provide quality care
3. Review of survivorship care plans as a tool to improve quality of care
4. Conclusions
Institute of Medicine Report:
Institute of Medicine Report: Institute of Medicine Report:
Institute of Medicine Report:
From Cancer Patient to Cancer Survivor:
From Cancer Patient to Cancer Survivor: From Cancer Patient to Cancer Survivor:
From Cancer Patient to Cancer Survivor:
Lost in Transition Lost in Transition Lost in Transition Lost in Transition
Recommendation #2:
Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan
… (the) ‘survivorship care plan’
What is a Survivorship Care Plan (SCP)?
What is a Survivorship Care Plan (SCP)?
What is a Survivorship Care Plan (SCP)?
What is a Survivorship Care Plan (SCP)?
Personalized record of care
Cancer treatment summary
Diagnostic tests completed
Risk of recurrence
Signs and symptoms of recurrence
Recommended surveillance guidelines (recurrence and new cancers)
Potential long-term and late-effects
Preventive care recommendations
Elements of a Survivorship Care Plan Elements of a Survivorship Care Plan Elements of a Survivorship Care Plan Elements of a Survivorship Care Plan
Diagnostic tests performed and results
Tumor characteristics (e.g. site, stage, grade, markers)
Dates of treatment initiation and completion
Surgery, radiotherapy, chemotherapy, including agents used, treatment regimen, total dosage, clinical trials (if any), and toxicities experienced during treatment
Psychosocial, nutritional, and other supportive services
Contact information on treating institutions and providers
Identification of a key coordinator of continuing care
Treatment Summary
Rehabilitation Elements of a Survivorship Rehabilitation Elements of a Survivorship Rehabilitation Elements of a Survivorship Rehabilitation Elements of a Survivorship Care Plan
Care Plan Care Plan Care Plan
Long-term and late-effects of treatment
Lifestyle/behavioral interventions
Non-cancer care
Screening/prevention
Other medical conditions
Education about resources
Testing a Model of Primary Care Follow Testing a Model of Primary Care Follow Testing a Model of Primary Care Follow
Testing a Model of Primary Care Follow----up up up up of Breast Cancer Patients
of Breast Cancer Patients of Breast Cancer Patients of Breast Cancer Patients
STUDY YEARS METHODS SUBJECTS
Phase I
1991-1992 Focus Groups Patients (England)
1992-1993 Focus Groups Patients (England)
1992-1993 Survey GPs (England)
1992-1993 Survey Specialists (England)
Phase II 1993-1994 RCT (n=296) English Patients
Phase III 1997-2003 RCT (n=968) Canadian Patients
Phase IV 2007 + RCT (n=400) Canadian Patients
Randomized Trial to Test a Randomized Trial to Test a Randomized Trial to Test a Randomized Trial to Test a Survivorship Care Plan
Survivorship Care Plan Survivorship Care Plan Survivorship Care Plan
Objective: to determine if a survivorship care plan for breast cancer survivors who are ready for transition from specialist care to primary care improves patient and health service outcomes
Intervention:
Guideline for primary care physician
Guideline for patient
Educational session for patient
Survivorship care plan for patient
Multicentre randomized trial:
n=400 patients
Control Group Experimental Group
Follow-up care transferred to the patient’s PCP
Patient and PCPs instructed to schedule the first follow-up visit in approximately 3 months
Follow-up transferred to the patient’s PCP plus
Patient gets → educational session by
nurse and survivorship care plan
PCP gets→ usual discharge letter, user friendly guideline, copy of survivorship care plan, full guideline and reminder table Patients and PCPs instructed to schedule the first follow-up visit in approximately 3 months
28
Canadian Partnership Against Cancer:
Canadian Partnership Against Cancer:
Canadian Partnership Against Cancer:
Canadian Partnership Against Cancer:
Objectives Objectives Objectives Objectives
Canadian Partnership Against Cancer Objectives Canadian Partnership Against Cancer Objectives Canadian Partnership Against Cancer Objectives Canadian Partnership Against Cancer Objectives::::
Reduce the expected number
of cancer cases
Enhance the quality of life for those affected
by cancer
Lessen the likelihood of Canadians dying
from cancer
Increase effectiveness and efficiency
of the cancer control domain
1. Reduce gaps in knowledge to enhance cancer control
2. Facilitate and accelerate implementation of best available knowledge 3. Optimize quality and access
4. Improve the cancer experience for Canadians
Priorities for Survivorship Priorities for Survivorship Priorities for Survivorship Priorities for Survivorship Care in Canada
Care in Canada Care in Canada Care in Canada
Identification (and understanding) of survivors’ needs and research in this domain
Development and implementation of appropriate
models of care
guidelines
follow-up care plan(s)
Increased collaboration between the health care and cancer care systems, including the community
Priorities for Survivorship Priorities for Survivorship Priorities for Survivorship Priorities for Survivorship Care in Canada
Care in Canada Care in Canada Care in Canada
Establish national standards and guidelines for survivorship care
Identifying appropriate models of care delivery to meet the long- term needs of survivors
Development and implementing survivorship care plans
Promoting survivorship research
Ensuring effective knowledge translation
Facilitating a comprehensive communications plan
Promoting a consortium of national cancer advocacy groups
Outline of Presentation Outline of Presentation Outline of Presentation Outline of Presentation
1. Overview of the need for coordination of care across health care sectors
2. Review the interface between primary care and oncology care to provide quality care
3. Review of survivorship care plans as a tool to improve quality of care
4. Conclusions
Conclusions Conclusions Conclusions Conclusions
Meeting rehabilitation needs of the large and growing prevalence of cancer survivors is a challenge for health care systems internationally
Change in perspective from acute life threatening disease to chronic disease
Majority of cancer survivors are elderly with multiple co-morbid conditions
Health care needs pertain to rehabilitation for the index cancer as well as general medical and preventive care, involving different health care sectors
Understanding how to meet those needs is a challenge for cancer systems worldwide
Niagara Falls, Canada
