Transcript Slide Title Text - Wisconsin Cancer Council

Survivorship Programs:
Getting Started
Tiffany Marbach, MSN, RN, ACNS-BC
2nd Annual Wisconsin Survivorship
Forum
June 10, 2011
Background
• Cancer center is in early development of
survivorship program based upon
recommendations set forth by the IOM.
• Survivorship program has become a
strategic priority among administrators,
physicians, nurses, and staff.
• To prepare for implementation of
survivorship program, identifying cancer
survivors’ perceptions and preferences
was deemed necessary.
Patient Preferences
Purpose/Research
Approach:
• To examine patient
preferences for content
and methods of delivering
treatment plan
information, educational
information, and
survivorship care plans.
• Thematic analysis of four
audio taped focus groups
of cancer survivors.
Participants/Methodologic
Approach:
• 40 cancer survivors who
had completed initial
treatment. Participants
were grouped by disease
site.
• An exploratory,
descriptive approach with
in-depth focus group
thematic and comparative
analysis methodology.
The data are grouped into
four categories.
Participant Characteristics
Group and Cancer Type
Total
Participants
N= 40
Participants by
Gender
Group 1 – Prostate/GU/Skin
11
Male=6
Female=5
Group 2 – Breast/Gynecological
12
Male=0
Female=12
Group 3 – GI/Head &
Neck/Sarcoma
6
Group 4 – Brain/Pancreas/Lung
11
Male=1
Female=5
Male=6
Female =5
Focus Group Questions
Initial Care/Treatment
Plan:
• What types of information
were received from staff at
the time of initial diagnosis?
• What was helpful and what
was missing?
• What types of information
would be needed in the initial
treatment plan?
• What is the best presentation
method (electronic versus
paper hard copy) for this type
of plan?
Patient Education:
• What was useful and what
was not useful in the
educational binder given to
patients at time of
diagnosis?
• Was anything missing that
should be included?
• What was the overall
effectiveness and
usefulness of materials?
Focus Group Questions
•
•
•
•
•
•
•
Survivorship Care Plan:
What types of information did patients receive upon
completion of treatment?
Was this information complete and how was the information
used?
What was missing?
What types of information is needed in a survivorship plan of
care?
What timeframe would they like to receive the information?
Who is the appropriate person to communicate the plan with
the patient?
What type of format would the survivor prefer the information?
Initial Treatment Plan Components
• Cancer staging information (including site, stage, and
histology)
• Contact names and numbers of the patient’s care
team
• Options for multi-disciplinary referrals
• Dates and information regarding treatment (including
surgery, radiation therapy, and/or chemotherapy)
• Follow-up testing needed (including labs and
imaging)
• Clinical trial information (if applicable)
Survivorship Care Plan
Components
• Cancer staging information (including site, stage, and
histology)
• Contact names and numbers of the patient’s care team
• Multi-disciplinary referrals utilized
• Chemotherapy drugs (route, how tolerated, start/end dates)
• Radiation therapy (how tolerated, start/end dates, site)
• Surgery (date, type of procedure(s))
• Follow-up testing needed (including labs and imaging)
• Clinical trial information (if applicable)
• Potential late effects of treatment
Results: Survivor Education
• Necessity of patient education binder
(“helpful tool”; “organizer”)
• Necessity of a glossary to define complex
medical terms
• Themes of anger/confusion (“Who do I call to
ask questions when I need an answer?”)
• Preference is for hard copy so information
could be read by family members and
referenced later in treatment
Results: Initial Treatment Plan
• Described as “a starting point for
understanding”
• Themes of fear/confusion: “I went to all the
different doctors and they told me what their
role would be in treatment…but I really did not
have a good idea of what comes first, second.”
• “I need a clear game plan laid out for me to
review.”
• Prefer to be given by main treatment MD in
hard copy
Results: Survivorship Care Plan
• Need for sorting out and understanding information related to
follow-up, testing, and surveillance
• Every participant would have liked a clear and concise care
plan on completion of treatment.
• “Who to start with or call once treatment is over?”
• Themes of fear, anxiety (recurrence), and uncertainty
• Could be handed to new physicians if necessary in the future
• Helpful for monitoring for unusual or abnormal late effects
• Preference is for hard copy format and electronic for
portability
• Emphasis that it must be reviewed with each survivor
individually
Results: Patient Support
• Need for more emotional and spiritual support
especially first few weeks following completion of
treatment
• “I looked fairly normal, living a normal life…and there
was still a great need for support…[I felt] cut off.”
• Additional spiritual support following active treatment
• Other services suggested included: yoga,
aromatherapy, massage therapy, acupuncture, and
exercise classes
• Need for additional post-treatment support groups and
mentorship
Conclusions
• Taking time to clearly hear the voice of the patient is
critical for guidance in individual program development.
• Patients expect written, personal treatment plans and
survivorship plans.
• Treatment plans and survivorship care plans are
interventions that assist in addressing emotional needs
of overwhelming anger and confusion of both patients
and family members.
• Nurses play a primary role in the development,
delivery, and clarification of plans of care, along with
other multidisciplinary team members. Patients expect
nursing involvement.
Oncology Nurse Knowledge
in Providing Cancer
Survivorship Care
Background/Purpose
• The role of the oncology nurse is deeply entwined in working with
patients through active treatment and following into survivorship.
• Oncology nurses will be expected to be able to address the
ongoing survivorship needs of the cancer patient.
• To identify the level of perceived knowledge of oncology
nurses working in a large academic Midwestern cancer care
center regarding cancer survivorship.
• Findings will affect the survivorship care planning
implementation process in the cancer center.
• Findings from this survey identified content areas related to
cancer survivorship that need to be addressed with the nurses
so they can provide optimal survivorship care to cancer
survivors.
Methods
•
•
•
•
•
•
•
Design:
Descriptive, exploratory survey
Survey was adapted with permission from the ONS (2010)
Setting:
Cancer center (4 departments)
Target population:
All 51 RNs employed at the cancer center
The nurses worked in the day hospital/procedure suite, the
clinics, the breast care center, or the radiation oncology area.
Sampling technique:
Convenience sampling (no exclusion criteria)
Data collected using paper and pencil questionnaire
Survey Tool
• 11 items designed to assess the
oncology nurses’ knowledge of
aspects surrounding survivorship
care.
First 4 Questions:
• Skill level in providing care to the
cancer survivor
• Areas of survivorship RNs
address with cancer survivors
• Topics or aspects of survivorship
care RNs would like to learn more
about
• Topics or aspects of survivorship
care are RNs most frequently
asked about by cancer survivor
•
•
•
•
•
•
•
Likert-Scale Questions:
Prevention and management of
physical late and long-term
effects of cancer and treatment
Prevention and management of
emotional effects of cancer and
treatment
Management of long-term and
practical needs of patients with
cancer
Demographic Questions:
Years worked as an oncology
nurse
Oncology nurse certified
Highest degree earned
Location worked in cancer center
Conclusions
Physical Late & Long
Term Effects:
1. Ostomy
management
2. Renal changes
Emotional Effects:
3. Post traumatic
stress
4. Fertility issues
5. Sexual dysfunction
and sexual health
6.
7.
8.
9.
Long Term and
Practical Needs:
Financial concerns
Insurance issues
Employment issues
Health care access
Implications
• Oncology nurses are at the forefront of
essential survivorship education and care,
and assessing what their needs are prior
to design and implementation of a
survivorship program is essential.
• Ultimately once their knowledge gaps are
assessed and addressed, they should be
able to provide that pertinent survivorship
education effectively and confidently.
Implications
• A review of the literature revealed a gap in
knowledge related to the implementation of a
successful cancer survivorship program with
nurses at the forefront.
• While much is known about the oncology
nurses’ role in cancer survivorship, the
knowledge needs of the oncology nurse in
developing a cancer survivorship program
has been understudied and rarely taken into
consideration.
Implications
• In the very near future, the cancer center will be
implementing a holistic survivorship program aimed to
address the unique needs of survivors.
• Oncology nurses will play an integral role in the success of
this program’s achievement.
• Before implementation can occur, the learning needs should
be addressed for successful survivorship care to be
provided.
• Had gap analysis not been performed, many of the learning
needs of oncology nurses may have gone unmet.
• Educators in the cancer center can determine proper steps
in creating a survivorship program that is sustained mostly
by its oncology nurses.
Take Home Messages
• The IOM has set forth clear recommendations to
guide development of survivorship care plans and
programs.
• These plans and programs will become standard in
the next few years, and will be an expectation of
accredited, comprehensive cancer programs.
• Starting with the basics in development of a
survivorship program is key: listen to the voices of
the patients/survivors, as well as the providers who
will be responsible for this essential care.
Take Home Messages
• It should not be assumed that nurses and
providers who care for survivors are
knowledgeable in all aspects of essential
survivorship care. Taking time to address
potential knowledge gaps will only enhance
care provided to the patient.
• There are numerous resources available for
nurses, providers, survivors, and families
regarding survivorship care.
Questions?