Survivorship Programs: Getting Started Tiffany Marbach, MSN, RN, ACNS-BC 2 nd 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/Skin11 Male=6 Female=5 Group 2 – Breast/Gynecological12 Male=0 Female=12 Group 3 – GI/Head & Neck/Sarcoma 6 Male=1 Female=5 Group 4 – Brain/Pancreas/Lung11Male=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 Long Term and Practical Needs: 6.Financial concerns 7.Insurance issues 8.Employment issues 9.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?