The Role of Clinical Practice Guidelines,
Survivorship Care Plans, and Inter-sectoral Care in Cancer Rehabilitation
Prof. Eva Grunfeld, MD, DPhil, FCFP
Ontario Institute for Cancer Research/Cancer Care Ontario and Giblon Professor, University of Toronto
Outline of Presentation
1.
Review of clinical practice guidelines (CPGs) as a tool to improve quality of care
2.
Review of survivorship care plans (SCPs) as a tool to improve quality of care
3.
Review the interface between primary care and oncology care to provide quality care
4.
Propose a framework for
survivorship/rehabilitation research
5.
Conclusions
Source: NCI/IOM report
12 million in 2009
Estimated Cancer Prevalence in Selected Countries
UK = 2 million (increasing by 3.2% per year)
Canada = 1 million
US = 12 million
Worldwide = 22.4 million
Approximately 3% of the population in Europe, US and Canada
Breast, prostate, colorectal cancer are the most prevalent but approx 50% are “other cancers”
Factors Contributing to the Challenge of Providing Rehabilitation/Survivorship Care
Increasing incidence - growth and aging of the population
Increasing prevalence –
improved survival due to earlier diagnosis (e.g. screening) and improved treatments
New more complex treatments
Paradigm shift from life-threatening illness to chronic illness
Growing awareness of long-term and late- effects
Population based studies on follow-up care show
duplication of care
care not consistent with evidence
Examples of Rehabilitation Needs
Surgery Radiation Chemotherapy
Cosmesis
Functional disability
Pain
Organ damage
Scarring/adhesions
Hernia
Lymphedema
Systemic
endocrine, spleen
Second malignancies
Neurocognitive
Dry eyes, cataracts
Xerostomia, caries
Hypothyroidism
CVD, myopathy
Pneumonitis/fibrosis
Strictures, proctitis
Infertility, impotence
Lymphedema
Bone fractures
MDS, AML
„Chemo brain‟
Cardiomyopathy
Renal toxicity
Menopause
Infertility
Osteoporosis
Neuropathy
The Children‟s Oncology Group http://www.survivorshipguidelines.org
Examples of Late-effects – Breast Cancer
From Cancer Patient to Cancer Survivor, IOM Report 2006
Common Less Common
Premature menopause
Depends on age and regimen; 70% of women over 40 CMF
Cardiovascular Disease
CHF 1-5%
Hot flashes 40-50% Second Primaries Leukemia 1-2%
Weight gain 50% gain 6-11 lbs; Endometrial cancer
<1%
Fatigue 30% 1-5 yrs Sarcoma <1%
Cognitive Impairment
30% Bone health ≈2% fracture on AI
Lymphedema 12-35% Blood clots 1-3%
Outline of Presentation
1.
Review of clinical practice guidelines (CPGs) as a tool to improve quality of care
2.
Review of survivorship care plans (SCPs) as a tool to improve quality of care
3.
Review the interface between primary care and oncology care to provide quality care
4.
Propose a framework for
survivorship/rehabilitation research
5.
Conclusions
Evidence-based Clinical Practice Guidelines (CPGs)
CPGs are widely accepted as a potential tool to improve quality of care
Most cancer CPGs have focused on treatment
Some CPG programs have developed guidelines on cancer rehabilitation /survivorship covering topics on
Follow-up – visit and test frequency
Supportive care needs
Rehabilitations needs (e.g., occupational)
Late-effects
Long-term effects
ASCO 2006 update; CMAJ 2005 update
Country Cancer Control Strategy Guidelines Australia No mention of survivorship or
rehabilitation
Most discuss follow-up care and survivorship
Canada Part of Rebalance Focus priority area
National breast cancer guidelines on follow-up care; provincial guidelines
discuss follow-up care for specific cancers New
Zealand
Goal is to improve quality of life through support, rehabilitation and palliative care
Calls for guidelines; no specific guidelines identified
Nordic Countries
Calls for rehabilitation services offered to all patients
No guidelines identified Scotland No specific mention of survivorship
or rehabilitation
All cancer site guidelines discuss follow- up care
England Cancer Survivorship Initiative NICE guidelines discuss follow-up care for specific cancer sites
US National cancer strategy Organizations develop disease specific survivorship guidelines (e.g., ASCO, NCCN)
Grunfeld JCO 2006
Cancer Survivorship Strategies and Guidelines
in Selected Countries
Canadian CPGs on Follow-up after Treatment for Breast Cancer
Frequency of visits tailored to patient‟s needs
Mammograms annually
No other routine investigations
Encourage patients to report new persistent symptoms
Psychosocial support
Special concerns
:
cognitive functioning, fatigue, weight management, osteoporosis, sexual functioning, pregnancy
Grunfeld et al, CMAJ 2006
Testing a Model of Primary Care Follow-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
RCT on Primary Care vs Specialist Follow-up of
Breast Cancer:
Guidelines on Follow-up Care Sent to PCPsOutline of Presentation
1.
Review of clinical practice guidelines (CPGs) as a tool to improve quality of care
2.
Review of survivorship care plans (SCPs) as a tool to improve quality of care
3.
Review the interface between primary care and oncology care to provide quality care
4.
Propose a framework for
survivorship/rehabilitation research
5.
Conclusions
Institute of Medicine Report: 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)?
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
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 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-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
RCT to Test a 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 family physician
Guideline for patient
Educational session for patient
Survivorship care plan for patient
including plan for initiating aromatase inhibitor, according to oncologist‟s recommendation
Multicentre RCT: 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
Outline of Presentation
1.
Review of clinical practice guidelines (CPGs) as a tool to improve quality of care
2.
Review of survivorship care plans (SCPs) as a tool to improve quality of care
3.
Review the interface between primary care and oncology care to provide quality care
4.
Propose a framework for
survivorship/rehabilitation research
5.
Conclusions
Health Care Sectors along the Continuum of Cancer Care
Cancer Care Continuum Access
to quality care Access
to care
Screening Diagnosis Surgery Treatment Palliative care Follow-up /
Survivorship
Need
Patient and Family PCP
Nurse
General Surgeon Specialist Surgeon Oncologist(s)
Supportive Care Team (i.e., social worker, nutritionist, pharmacist)
Health Care Providers seen by Cancer Survivors
Source: Pollack, Cancer 2009
*
Breast Cancer: Mix of Physician Visits
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
* P < 0.001 Source: Grunfeld et al, JOP 2010
Views on PCP 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
Perceived Barriers to Care
Barriers Mod. or large
problem (%)
95% CI
Lack of standards of care for long-term adult cancer survivors 52.5 45.7 to 59.3 Inadequate preparation/formal training around survivorship issues 47.2 40.4 to 54.1 Limited access to mental health referrals for cancer survivors 45.7 38.9 to 52.5
Lack of time to adequately address cancer survivorship issues 42.4 35.7 to 49.3 Inadequate access to patients‟ cancer treatment history 36.1 29.7 to 42.8
Patient anxiety or fears about health 28.8 22.9 to 35.3
Lack of practical experience in caring for cancer survivors 22.4 16.9 to 27.9 Limited access to cancer specialists when needed 10.5 6.8 to 15.3 Limited access to noncancer specialists such as cardiac or endocrine
specialists
7.8 4.6 to 12.1 Patient reluctance to discuss previous cancer history 2.3 0.8 to 5.3
Source: Bober, Cancer 2009
Percent Willing to Provide Exclusive Cancer Follow-up:
Results from a Canadian National Survey of PCPs11Current 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
Usefulness of Various Modalities to Help PCPs Provide Exclusive Cancer 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
Interventions to Improve Inter-sectoral Information Transfer
Computer-generated vs dictation to create summaries
Timeliness and quality
Mode of delivery (patient, electronic, fax)
Timeliness
Format of document (e.g., standardized format)
Quality
Shared electronic medical record
PCP and patient access
Possible IT Solutions
Electronic medical record (EMR) in PCP practices
Guidelines on follow-up integrated into EMR with reminder systems for follow-up care (i.e., decision support software) and preventive care
Linkable and searchable EMR so that outcomes can be studied
Electronic updates on new research automatically integrated into PCP‟s EMR (just in time information)
Computer generated, disseminated and updated survivorship care plans
Outline of Presentation
1.
Review of clinical practice guidelines (CPGs) as a tool to improve quality of care
2.
Review of survivorship care plans (SCPs) as a tool to improve quality of care
3.
Review the interface between primary care and oncology care to provide quality care
4.
Propose a framework for
survivorship/rehabilitation research
5.
Conclusions
COMMON ISSUES
• Medical follow-up care
• General preventative care
• General health care
• Rehabilitation
• Psychosocial issues
•Occupational/educational issues
• anatomical site
• treatment
• surgery
• radiation
• chemotherapy
• hormone
• risk factors
• age
SPECIFIC ISSUES
Adult Disease site
Childhood & Young Adult Disease site
Research Setting
Prevalence of problem
Implementation studies (Phase III to IV) KT/dissemination
Community (2°/1° Care)
Identification of problem
Understanding basic underlying mechanism
Testing interventions (Phase I to III) Cancer specialist
clinics
(3°/2° Care)
Research Questions Setting
Refinement
Outline of Presentation
1.
Review of clinical practice guidelines (CPGs) as a tool to improve quality of care
2.
Review of survivorship care plans (SCPs) as a tool to improve quality of care
3.
Review the interface between primary care and oncology care to provide quality care
4.
Propose a framework for
survivorship/rehabilitation research
5.
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
CPGs, SCPs and HIT are potential tools to improve quality of care across health care sectors
Niagara Falls, Canada
