The Role of Clinical Practice Guidelines, Survivorship Care Plans, and Inter-sectoral Care in Cancer Rehabilitation

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1 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

2 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

3

4 12 million in 2009 Source: NCI/IOM report

5 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

6 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

7 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

8 Examples of Late-effects Breast Cancer 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% From Cancer Patient to Cancer Survivor, IOM Report 2006

9 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

10 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

11 Cancer Survivorship Strategies and Guidelines in Selected Countries 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 Nordic Countries Scotland Goal is to improve quality of life through support, rehabilitation and palliative care Calls for rehabilitation services offered to all patients No specific mention of survivorship or rehabilitation Calls for guidelines; no specific guidelines identified No guidelines identified All cancer site guidelines discuss followup 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

12 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

13 Testing a Model of Primary Care Follow-up of Breast Cancer Patients STUDY YEARS METHODS SUBJECTS Focus Groups Patients (England) Phase I Focus Groups Patients (England) Survey GPs (England) Survey Specialists (England) Phase II RCT (n=296) English Patients Phase III RCT (n=968) Canadian Patients Phase IV RCT (n=400) Canadian Patients

14 RCT on Primary Care vs Specialist Follow-up of Breast Cancer: Guidelines on Follow-up Care Sent to PCPs

15 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

16 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

17 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

18 Elements of a Survivorship Care Plan Treatment Summary 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

19 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

20 Testing a Model of Primary Care Follow-up of Breast Cancer Patients STUDY YEARS METHODS SUBJECTS Focus Groups Patients (England) Phase I Focus Groups Patients (England) Survey GPs (England) Survey Specialists (England) Phase II RCT (n=296) English Patients Phase III RCT (n=968) Canadian Patients Phase IV RCT (n=400) Canadian Patients

21 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

22 Multicentre RCT: n=400 patients Control 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 Experimental Group 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

23 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

24 Health Care Sectors along the Continuum of Cancer Care Access to quality care Access to care Need Patient and Family PCP Nurse General Surgeon Specialist Surgeon Oncologist(s) Supportive Care Team (i.e., social worker, nutritionist, pharmacist) Screening Diagnosis Surgery Treatment Follow-up / Palliative Survivorship care Cancer Care Continuum

25 Health Care Providers seen by Cancer Survivors * Source: Pollack, Cancer 2009

26 Breast Cancer: Mix of Physician Visits Follow-up Year Physician Specialty Year 2 (n=11,219) % of patients with at least one visit Year 3 (n=10,026) Year 4 (n=9,297) Year 5 (n=8,624) Primary Care Only* Oncology Only* Multiple PCP and Oncology* PCP and Medical PCP and Radiation PCP and Surgical PCP and Multiple * P < Source: Grunfeld et al, JOP 2010

27 Views on PCP Follow-up % Agreeing Can 1 PCP UK 2 PCP UK 2 Specialists PCPs are better placed to provide psychological support PCPs should be involved at an earlier stage in follow-up PCPs have the skills necessary for follow-up Patients will not be adequately reassured by PCP follow-up Patients expect to be followed by cancer specialist Del Guidice, Grunfeld et al, Grunfeld, Mant et al, 1995

28 Perceived Barriers to Care Barriers Mod. or large problem (%) 95% CI Lack of standards of care for long-term adult cancer survivors to 59.3 Inadequate preparation/formal training around survivorship issues to 54.1 Limited access to mental health referrals for cancer survivors to 52.5 Lack of time to adequately address cancer survivorship issues to 49.3 Inadequate access to patients cancer treatment history to 42.8 Patient anxiety or fears about health to 35.3 Lack of practical experience in caring for cancer survivors to 27.9 Limited access to cancer specialists when needed to 15.3 Limited access to noncancer specialists such as cardiac or endocrine specialists to 12.1 Patient reluctance to discuss previous cancer history to 5.3 Source: Bober, Cancer 2009

29 Percent Willing to Provide Exclusive Cancer Follow-up: Results from a Canadian National Survey of PCPs 1 Cancer 2yrs 3 to 5 yrs 10 + or never Prostate Colorectal Breast Lymphoma Current experience providing exclusive follow-up most significant predictor of willingness. Source: Del Guidice, Grunfeld, et al, 2009

30 Usefulness of Various Modalities to Help PCPs Provide Exclusive Cancer Follow-up Rank Modality % 1 Patient-specific standardized letter with guidelines Printed guidelines Expedited rates of re-referral Expedited access to test for suspected recurrence Ability to telephone\ specialist for advice 86.1 Source: Del Guidice, Grunfeld, et al JCO 2009

31 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

32 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

33 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

34 COMMON ISSUES Medical follow-up care General preventative care General health care Rehabilitation Psychosocial issues Occupational/educational issues SPECIFIC ISSUES Adult Disease site Childhood & Young Adult Disease site anatomical site treatment surgery radiation chemotherapy hormone risk factors age

35 Research Setting Setting Cancer specialist clinics (3 /2 Care) Community (2 /1 Care) Identification of problem Understanding basic underlying mechanism Testing interventions (Phase I to III) Prevalence of problem Implementation studies (Phase III to IV) KT/dissemination Research Questions Refinement

36 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

37 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 comorbid 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

38 Niagara Falls, Canada

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