Development of the Survivor Care Plan Whats Next Life After Cancer Treatment

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Development of the Survivor Care Plan Whats
Next? Life After Cancer Treatment?
Jody Jackson Kathy Scheid 11/17/2009
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Overview of This Session

• Survivorship issues nationally locally
• Survivorship Care Plan Project Team
• Pilot of Whats Next? Life After Cancer
  Treatment?
• Future work

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The Issue of Survivorship

• With the risk of more than one in three getting
  cancer during a lifetime,
• each of us is likely to experience cancer, or
  know someone who has
• survived cancer. Although some cancer survivors
  recover with a
• renewed sense of life and purpose, what has often
  been ignored
• is the toll taken by cancer and its treatmenton
  health, functioning,
• sense of security, and well-being. Long lasting
  effects of treatment may
• be apparent shortly after its completion or arise
  years later. The
• transition from active treatment to
  post-treatment care is critical to long
• term health.
• Institute of Medicines (IOM) Cancer Patient to
  Cancer Survivor Lost in
• Transition

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IOM Recommendations

• Patients completing primary treatment should be
  provided with a comprehensive care summary and
  follow-up plan that is clearly and effectively
  explained.
• This Survivorship Care Plan should be written
  by the principal provider(s) who coordinated
  oncology treatment.
• This service should be reimbursed by third-party
  payors of health care.

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IOM Recommendations (contd)

• Survivorship Care Plans should include the
  following
• Cancer type
• Treatments received their potential
  consequences
• Recommended follow-up
• Preventive practices how to maintain health
  and well-being
• Information on legal protections, employment,
  access to health insurance
• Availability of psychosocial services in the
  community

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Minnesota Cancer Survivors


Source Adapted from Estimated Minnesota Cancer
Prevalence, January 1, 2000. April 2004
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Cancer Plan Minnesota 2005-2010

• Objective 17 Optimize continuity of care for
  cancer survivors during and beyond the initial
  course of treatment.
• Strategies
• Develop and promote methods to facilitate the
  exchange of information among all healthcare
  providers involved in the care of cancer
  survivors.
• Educate cancer survivors and their families about
  the importance of seeking information about the
  short- and long-term plans for their treatment
  and follow-up.

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Needs Assessment

• In 2007 QOL Task Force conducted needs assessment
  regarding survivorship care plans (SCP)
• On-line search identified existing SCP tools
  common elements were compared
• 20 largest hospital health care systems in MN
  surveyed regarding use of SCP tools

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Results of Needs Assessment

• 24 SCPs Identified
• Limitations
• overly detailed
• clinical language
• too simplified to convey meaningful information
• not portable

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Results from Smaller Hospitals

• Lack of resources (professional and financial) to
  create own tool
• Some existing tools are sole property (branded)
  of a single organization
• Existing tools don't meet unique needs of
  Minnesotans (i.e., snowbirds, residents of rural
  areas, Native Americans)

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• The Minnesota Cancer Alliance charged the
  Survivor Care Plan Project Team to create a SCP
  that would better meet the needs of Minnesotans.

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Building the SCP Project Team

• American Cancer Society
• Cancer Legal Line
• Carlson Media
• Fairview Medical Oncology Clinic
• Fond du Lac Comprehensive Cancer Program
• Gildas Club
• HealthPartners Research Foundation
• Hennepin County Medical Center
• Kittson County Hospice

• Masonic Cancer Center at the University of MN
• Mayo Clinic Cancer Center
• Minnesota Department of Health
• Minnesota Oncology
• Minnesota Ovarian Cancer Alliance
• National Marrow Donor Program
• Park Nicollet Health Services
• United Hospital
• Virginia Piper Cancer Institute

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Tenets of Our SCP

• Non-proprietary
• Facilitate communication, support, empower
  inform survivors
• Identify universal issues of cancer survivors and
  allow personalization
• Facilitate communication between oncology and
  primary care providers
• Dynamic
• Not meant to duplicate medical charts
• Bridge the gap at post-treatment

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Whats Next? Life After Cancer Treatment
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Goals of SCP

• Help survivors
• Document the history of their cancer care
  experience
• Manage follow-up medical care
• Better understand short- and long-term side
  effects
• Become more aware of self-care issues
• Provide a platform for dialog between patients
  and their providers

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SCP Pilot Project

• Conducted from May-June 2009
• Gathered feedback from survivors on the
  usefulness of the booklet
• Identified areas for modification

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Evaluation Methods

• Providers from 6 Alliance organizations
• Park Nicollet Frauenshuh Cancer Center
• Kittson Memorial HealthCare Center
• Virginia Piper Cancer Institute
• Min-No-Aya-Win Clinic
• Mayo Clinic
• Minnesota Oncology

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Methods (contd)

• Gave booklet to cancer patients
• nearing completion of treatment
• completed treatment within the last year
• Reviewed used SCP one month
• Completed anonymous survey
• Content
• Usefulness

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Evaluation Results

• Response
• 117 booklets given out 27 completed survey
• Time from last treatment
• 0 to 3 months ago 44
• 4-9 months ago 20
• 10 months to gt1 year ago 36

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Usefulness (strongly agree/agree)

• 78 will be easy to use
• 67 will help me identify my current health
  concerns
• 89 will help me manage my post-treatment health
  information

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Usefulness (strongly agree/agree)
Its nice to know all this information.

• 74 will help me understand my post-treatment
  care
• 74 will help me communicate with my healthcare
  providers

Provides a document that helps the memory when
the physician asks about history, easy to forget
details.
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As more of us live (longer), the more important
side effects are becoming! Tell them to make
books of their information and create a space in
their book shelves get ready to learn!

• 74 will continue to use the SCP to manage care
• 100 felt the SCP should be offered to cancer
  patients in the future

I think it is very well done and the booklet
should be very helpful.
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This document was given to me 2 ¾ years after my
surgery and would have been much more helpful
earlier on this is so even though I participated
in all learning activities at my health system.

• 67 thought SCP should be given at diagnosis or
  beginning of treatment

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Suggestions for Modification

• Provide more space for patients to write
  information
• Provide a glossary of medical terms
• Lower literacy level where possible
• Reiterate that each survivors experience is
  unique that not all content may apply

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Thank You to the SCP Team
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Thank You to Our Consultants

• Health systems that piloted the SCP with their
  patients
• Cancer patients, survivors who provided their
  feedback
• Fairview Press for Health Literacy editing
• Mayo Clinic Cancer Center for designing and
  printing the booklet
• MCA Steering Committee for their guidance and
  support

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Future SCP Work Colorectal Cancer SCP Project

• Funded by American Cancer Society
• Collaboration between HealthPartners Research
  Foundation Minnesota Cancer Alliance
• Project Director, Jody Jackson
• Co-Project Director, Cheri Rolnick

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Goals

• To conduct needs assessment of survivors and
  health care professionals regarding the essential
  elements of a cancer SCP
• To develop user-friendly and culturally
  appropriate SCP for Minnesotans focusing on CRC
• To evaluate of the use and sustainability of the
  SCP tool among survivors and providers

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Year One Creating the SCP

• Surveying CRC Cancer Survivors (n50)
• Preferences for elements of SCP
• Prior history with SCP useful elements
• Preferences for timing of SCP introduction
• Preferences for source of SCP

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• Surveying Healthcare Professionals (n30)
• Preferences for elements of an SCP
• Prior experience with SCPs effective elements
• Preferences for timing of introduction

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Your Input is Needed!

• See me today
• Call me 952-967-7032
• E-mail me Jody.M.Jackson_at_HealthPartners.com