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 PCPs

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

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 PCPs1

1Current 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 QuestionsSetting

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