The Development of an APN Led Post Cancer Treatment Follow-Up Clinic

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The Development of an APN Led Post Cancer Treatment Follow-Up Clinic Shari Moura RN MN CON(C) CHPCN(C) Advanced Practice Nurse After Cancer Treatment Transition Clinic WCH-PMH ACTT Clinic CANO/ACIO Annual Conference 2010 September 14 th Edmonton, Canada

Presentation Objectives 1. Briefly describe the background on cancer survivorship 2. Describe the concept of logic models 3. Share the development of the PMH-WCH After Cancer Treatment Transition (ACTT) logic model 4. Describe the PMH-WCH ACTT clinic and current activities

Acknowledgements ***Patients and their families supporting the change Dr. Malcolm Moore (PMH) Ms. Barbara Fitzgerald (PMH) Dr. Gillian Hawker (WCH) Ms. Jane Mosley (WCH) Ms. Catharine McManamon (WCH) Ms. Cris Barrett (WCH)

Survivorship Experience The survivorship experience is dynamic, changing over time, with particular moments of stress being transitions, such as the transition from treatment to long-term followup. Cancer survivors face these psychosocial concerns and worries about the physical effects of their treatment across the continuum of care (Patricia Ganz, 2000)

Why look at post treatment care? Goal Four of the Ontario Cancer Plan is to improve the patient experience along every step of the cancer journey As many cancer treatments improve and survival rates increase, the numbers of those living beyond cancer continue to grow The survivorship agenda in Canada is gaining momentum as awareness of the issue is raised within several leading cancer care agencies, healthcare organizations, and policy makers Summary of the CQCO/CCO Expert Roundtable on Survivorship (CCO, 2008)

Survivorship Agenda in Canada 1. Living Beyond Cancer: Summary of the Expert Roundtable on Survivorship, Canadian Quality Council of Ontario & Cancer Care Ontario, Nov 2008, Toronto, Ontario 2. Pan-Canadian Guidance on Psychosocial and Supportive Care Services and Clinical Practices for Adult Cancer Survivors Draft guidelines in development Aug 2010 Canadian Partnership Against Cancer

Survivorship Agenda in Canada 3. Interventions to improve continuity of care in the follow-up of patients with cancer (Protocol) Copyright 2009 The Cochrane Collaboration. (Authors Ont, Que) 4. ENVIRONMENTAL SCAN OF CANCER SURVIVORSHIP IN CANADA: CONCEPTUALIZATION, PRACTICE AND RESEARCH (BC) April 2008 Prepared for: ReBalance Focus Action Group, Canadian Partnership Against Cancer

In 2004, there were 850 000 living Canadians who had received a diagnosis of cancer at some time in the previous 15-year period (2.5% of men, 2.8% of women). Canadian Cancer Statistics (2008)

Relative survival rate in Ontario (2001-2005) was highest for patients diagnosed with: prostate cancer 97% breast cancer 87% colorectal cancer 62% lung cancer 16% http://www.cancercare.on.ca/cms/one.aspx?pageid=41138

From Cancer Patient to Cancer Survivor Lost in Transition Committee on Cancer Survivorship: Improving Care and Quality of Life National Cancer Policy Board Editors: Maria Hewett, Sheldon Greenfield, and Ellen Stovall Institute of Medicine and National Research Council of the National Academies The National Academies Press 2005

Cancer Survivorship Definitions Lost in Transition : Following diagnosis and treatment and prior to recurrence of subsequent cancers or death National Coalition for Cancer Survivorship: An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition

IOM Recommendations WCH-PMH ACTT Focus 1. Deliver distinct and appropriate care 2. Provide comprehensive care summary and follow up plan 3. Systematically develop evidence-based clinical practice guidelines 4. Measure quality of survivorship care 5. Community and organizations should support survivorship programs and test different models of care

IOM Recommendations 6. Develop comprehensive cancer control plans that include consideration of survivorship care 7. Professional and volunteer organizations should provide and coordinate educational opportunities to HCPs regarding survivorship 8. Eliminate discrimination and adverse effects of cancer on employment 9. All cancer survivors have access to adequate and affordable health insurance 10. Initiate and support survivorship research

Developing a Logic Model Program Development and Evaluation University of Wisconsin -Extension http://www.uwex.edu/ces/pdande/evaluation/evallogicmodel.html Taylor-Powell, E., Steele, S., & Douglah, M. (1996). Planning a program evaluation. Retrieved Sept 2010, from University of Wisconsin- Extension-Cooperative Extension, Program Development and Evaluation Unit Website

A logic model is A depiction of a program showing what the program will do and what it is to accomplish A series of if-then relationships that, if implemented as intended, lead to the desired outcomes The core of program planning and evaluation 15 University of Wisconsin-Extension, Program Development and Evaluation

Logic Model Simplest form INPUTS OUTPUTS (Activities) OUTCOMES 16 University of Wisconsin-Extension, Program Development and Evaluation

Fully detailed logic model 17 University of Wisconsin-Extension, Program Development and Evaluation

Logic model and reporting Components of a Success Story 18 University of Wisconsin-Extension, Program Development and Evaluation

Logic models can be applied to: a small program a process (i.e. a team working together) a large, multi-component program an organization or business University of Wisconsin-Extension, Program Development and Evaluation 19

Developing the Logic Model for the PMH-WCH After Cancer Treatment Transition Clinic (ACTT)

Situation The overall growth in the systemic treatment of cancer, in the greater Toronto area, was 30% over the past 5 years and continues to grow at 5-6% per year. Improvements in cancer therapy have lead to longer durations of therapy, and the use of chemotherapy for new indications has improved survival rates. Cancer treatment is mainly delivered in PMH s ambulatory care clinics which are struggling to deal with the increased volumes leading to prolonged patient wait times, and increased stress and overtime for health care providers. Post cancer treatment clinic visits and linking patients/families to support programs or consults to address their need(s) may not be best met in active ambulatory treatment areas. The majority of cancer survivors are over the age of 60 and often have a variety of other health problems associated with aging. It is important to consider co-morbidities together with survivorship concerns (Grunfeld, 2008). Patients in their post treatment phase of care have unique needs which include both periodic surveillance to detect cancer recurrence, secondary primary cancers and, assessing for long/late term side effects of treatments. An AHSC AFP Innovation Grant Funding proposal has been approved to implement and evaluate two follow-up strategies for patients who are disease free following therapy. This includes an APN led after cancer treatment clinic and developing a process to transition the patient back to their primary care physician with a supportive structure. A partnership has developed between PMH and Women s College Hospital to support the development of an APN led post cancer treatment phase of care follow up clinic.

PMH s Situation Increased volumes in ambulatory clinics has led to prolonged wait times, and increased stress and overtime for health care providers Patients treated for cancer who are in their post treatment phase of care have unique needs Patients psychosocial post cancer treatment need(s) may not be best met in active cancer ambulatory cancer treatment areas

PMH s Situation An AFP Innovation Grant Funding proposal has been approved to implement and evaluate two post treatment care strategies for patients who are disease free following therapy 1. APN led After Cancer Treatment Transition Clinic (ACTT Clinic) 2. Developing a process to transition the patient back to their primary care physician with a supportive structure

PMH Priorities Change and innovation in care delivery. Need for post treatment cancer care to be transitioned from PMH. Develop standards for post cancer treatment care. Delivery of post treatment cancer care that reflects the needs of survivors and their families within outlined budget and infrastructure. Delivery of high quality, safe, and integrated patient care with engagement of patients/families and primary care physicians. Consolidate number of multi-disciplinary post treatment clinic visits (Med/Rad/Surg Oncology) PMH not only leads in cancer care but also in care delivery.

INPUTS OUTPUTS Leadership/Advisory Committee Human Resources: APN, GP, Clerical, Research Coordinator Money Time Technology Equipment Clinic Space Partnerships Patients/Families Best Practice/Evidence Based Guidelines Support Programs Ambulatory redesign is one of five transforming themes in PMH strategic plan ACTT Advisory Committee ACTT Operational Group Building Capacity for Partnerships Clinic Process, Practice Evaluation Cancer Survivorship Research Initiatives Participate in PMH Ambulatory Care Redesign Work Group for Patient Referral and Follow-Up Define the cohort of patients eligible for APN led ACTT clinic Establish assessment and practice guidelines Define operations and processes for clinic function Establish internal, external and community partnerships for support services Establish data base and data collection parameters Support and participate in research activities

OUTCOMES Model of Care for APN Led ACTT Clinic Short Term Medium Term Long Term Disease Site Group Specific: 1. Review medical and cancer treatment history 2. Assessment for recurrence and other cancers 3. Screening and management of long term effects of treatment 4. Consults and referral to support care services 5. Health promotion 6. Providing treatment summary 7. Development of follow-up plan of care 8. Communication with oncologist, RN Case Manager, primary care practitioner INDICATORS Establish and implement processes for referral to APN led ACTT clinic Establish and implement disease site group specific practice guidelines and processes for surveillance visits Identify referral programs and support services to meet patient/family needs Collect, review and summarize APN led follow up clinic activities Standard approach to clinic referrals, consults to support services, patient self care Develop APN led model of care that includes shared decision making with patient/family Development of standardized treatment summary and post cancer treatment plan of care Improved satisfaction related to post treatment coordination and continuity of patient/family care Successful transitioning of patients to APN led ACTT clinic Improved plan of care to address patient/family identified concerns related to post cancer treatment Improved delivery of high quality, safe, and integrated patient care post treatment Improved patient/family education related to health and wellness Research and evidence based practice related to survivorship Improved Patient/Family Experience Post Treatment # of post treatment follow up visit decanted to WCH, patient/family satisfaction survey results, type and frequency of referrals/consults to supportive care services, (re)referral patterns to PMH, recurrence rates

WCH-PMH Partnership Patient Care & Ambulatory Innovation Women s College Hospital and Princess Margaret Hospital are collaborating on a pilot project for patients who have completed cancer treatment. It is a dedicated post cancer treatment clinic offering ongoing surveillance for the physical and psycho-social needs of those transitioning back to a cancer-free lifestyle.

ACTT CLINIC Patients are transitioned from ambulatory care at PMH to the ACTT clinic at WCH 4 sites participating in transitioning patients to ACTT: Testes Melanoma Breast Colon & Rectal

Essential Components of Post Treatment Care ACTT Clinic Model of Care

Quality of life: conceptual model. SOURCE: City of Hope Beckman Research Institute (2004). Reprinted with permission from Betty R. Ferrell, PhD, FAAN; and Marcia Grant, DNSc, FAAN, City of Hope National Medical Center.

Cancer Patients Entering the Cancer System 100% Providing Supportive Care Services All patients require screening of needs on an ongoing basis. All patients require relevant information, basic emotional support, good communication, and symptom management. All patients require assessment of needs on a regular basis. 20% will only require this level of service Many will need additional information, education, and encouragement to seek additional help 30% will also require this level of service Some will require specialized/ professional intervention for symptom management/distress 35% 40% will also require this level of service A few may need complex care 10% 15% will also require this level of service Dr. Margaret Fitch, 2008

1. Assessment(s) for recurrence, metastasis, second cancers, new cancer; assessment of long term and late effects 2. Intervention for consequences of cancer and its treatments, for e.g.: lymphedema, sexual dysfunction; symptoms (e.g. fatigue); psychological distress experienced by cancer survivors and their caregivers; and concerns r/t employment, insurance, and disability 3. Coordination between specialists and primary care providers to ensure that all of the survivor s health needs are met

ACTT CLINIC Model of Care Disease Site Group Specific: 1. Communication/collaboration with specialized oncology nurses/oncologists during transition phase 2. Review medical and cancer treatment history 3. Assessment for signs of recurrence/other cancers (NCCN/ASCO/NICE) 4. Screening, assessment and management of late/long term side effects (ESAS, GAD-7, PHQ-9) 5. Process for (Re) Referral and consults as required 6. Health Promotion 7. Providing treatment summary/follow-up plan of care

Distress Assessment and Response Tool DART 4 validated screening measures: ESAS (every visit) SDI-21 for practical concerns PHQ-9 for depression every 3 months GAD-7 for anxiety Additional Items included in the 3 month screen Canadian Problem Checklist - informational and spiritual domains only Distress risk factors (living situation, personal/family ψ history) Current use of support Desire for referral Research Consent

35

MY AFTER CANCER TREATMENT SUMMARY AND CARE PLAN Components: 2 page document 1. Demographics (name, age, DOB) 2. Type of Cancer, Staging 3. Treatment (Surg, Oncologist Name, Hospital) 4. Side effects during treatment 5. Cancer site specific possible signs of recurrence 6. Outlining partnership with family doctor

MY AFTER CANCER TREATMENT SUMMARY AND CARE PLAN 7. Healthy weight setting goals 8. Diet link to Canada s food guide 9. Exercise link to guidelines Heart and Stroke 10. Smoking Cessation 11. Sun Safety 12. Survivorship Goals 13. Routine cancer screening (CRC, Prostate, Breast)

Research Inquiry Program evaluation and effectiveness, linking to determinant of health Patient/family satisfaction with care provided PMH/WCH team satisfaction Evaluation of post treatment summary and care plan for patients Partnership to contribute to cancer survivorship research

Our journey to date Dec 2009 Mar 2010 Apr 2010 May 2010 Sept 2010 CNS Hired ACTT Clinic officially opened Actively transferring patients First pt. seen @ ACTT 10 pts. Seen Over 90 pts. transitioned

Future Directions Addition of Family Physician specializing in oncology care to develop a collaborative model of care Participating in education of residents (FP, psychiatry etc) Expand inter-professional care team (NPs, Specialized Oncology RNs etc)

Contact Shari.moura@uhn.on.ca Shari.moura@wchospital.ca 76 Grenville Street Room: 620 Toronto ON M5S1B2 416-323-6400 ext: 4940