September 4, 2016 Texas Ballroom B 8:55-9:20 am

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1 September 4, 2016 Texas Ballroom B 8:55-9:20 am Are Survivor Care Plans Beneficial Or Not? Women With Breast Cancer Speak Out! Judith Ann Moran-Peters DNSc, RN, NE-BC, BC, John T. Mather Memorial Hospital Dr. Judith Moran-Peters is a nurse executive, educator and researcher with more than 40 year of professional Nursing experience. She holds specialty certification from ANCC in Nursing Administration and Gerontological Nursing. At the present time, Dr. Moran- Peters is the Coordinator of Nursing Research and Professional Development at John T. Mather Memorial Hospital, which is a 248-bed, Magnet-designated, teaching hospital on Long Island in New York State. Dr. Moran-Peters' research interest focuses on care of the elderly and womens' heath issues.

Judith Ann Moran-Peters DNSc, RN, NE-BC, BC Coordinator - Nursing Research and Professional

Mather Memorial Hospital Port Jefferson, New York 248-bed teaching hospital.

4 Star HCAHPS Rating (Medicare). One of only 2 hospitals, out of 22 hospitals On L.I.

2 Judith Ann Moran-Peters DNSc, RN, NE-BC, BC Coordinator - Nursing Research and Professional Development John T. Mather Memorial Hospital Port Jefferson, New York 248-bed teaching hospital. (Not-for-profit) Magnet-designated in Eight consecutive A Ratings (Leapfrog). 4 Star HCAHPS Rating (Medicare). One of only 2 hospitals, out of 22 hospitals On L.I. Fortunato Breast Center: Established in National Accreditation Program for Breast Centers (NAPBC) certification Present: Over 2,200 patients screened. (410 or 18% diagnosed with breast cancer). 1

3 IRB-Approved, Inter-Professional Research Study. Principal Investigator: Marianne Kiernan RN, CBCN, CN-BC Clinical Nurse Fortunato Breast Center Co-Investigators: Judith Moran-Peters DNSc, RN, NE-BC, BC (Advisor) Joseph Carrucciu MD Mary Ferrara BSN, RN, OCN Michelle Price MD Cheryl Zauderer PhD, RN, CNM, NPP Sarah Eckardt BA, MS Statistician (Dept. of Nursing Quality) The number of cancer survivors is increasing due to early diagnosis and advances in cancer treatment million cancer survivors in the USA (American Cancer Society, 2015). This represents approximately 5% of all Americans; USA population = 321 million) Breast cancer survivors represent the largest single segment of cancer survivors (23%) or 4 million people. Early diagnosis and treatment of breast cancer has made the 5 year survivor rate 95%. African American women are more likely than all other women to die from breast cancer. Latinas are 20% more likely to die from breast cancer that Caucasian women diagnosed at a similar age and stage. Low income breast cancer patients have five-year relative survival rates that are 9% lower than higherincome patients. Undocumented immigrants living in the United States are less likely to have access to health care options. 2

4 Breast Cancer Action (BCAction) recognizes that a number of diverse communities including: young, old, gay, transgender, disabled, immigrants and under-educated are disproportionately and uniquely impacted by breast cancer. However, due to available data (and lack thereof) on inequities in breast cancer, much work in this area is focused on race and class. Widespread, inclusive research is needed. A person is a cancer survivor from the time of diagnosis through the remainder of life. (National Coalition for Cancer Survivorship...NCCS; established 1986). 3 Survivorship Stages (Fitzhugh Mullan MD, 1985): (Acute, Extended, Permanent/Chronic) 4 Seasons of Permanent Survivorship: (Kenneth Miller MD, Seasons of Survival: Reflections of a Physician With Cancer, 1985) (Acute, Transitional, Extended, Permanent) 98% of people with breast cancer are women. Therefore, Breast Cancer is predominantly a feminist phenomenon. Feminist Theory selected as the guide, conceptual framework, for this research study. 3

5 Feminism a world view that values women and confronts systematic injustices based on gender. (Chinn and Wheeler, 1985). It is impossible for one universal women s experience to exist because gender alone does not shape women s lives. Age, ethnicity, education, class, race and sexual orientation all play a role in influencing how women behave, interpret and value their individual existence. (Hall& Stevens, 1991). Hall & Stevens (1991) identified: 3 Basic Principles Inherent in all Feminisms : 1. A valuing of women and attaching validity to their experiences, ideas and needs. 2. A recognition of the conditions that oppress women. 3. A desire to bring about social change through criticisms and political action. The United States Constitution, adopted in 1789, left the boundaries of suffrage undefined. Voter qualifications were explicitly delegated to the individual states Seneca Falls Convention in New York is traditionally held as the start of the women s rights movement August 18, 1920: 19 th Amendment to the United States Constitution prohibits any United States citizen from being denied the right to vote on the basis of sex. (15 th Amendment, 1869 granted African American men the right to vote. Not realized, however until the Voting Rights Act in 1965 when the majority of African Americans were registered to vote.) 4

6 1998 Federal Breast Reconstruction Act. Women s Health and Cancer Rights Act. In the case of a health insurance participant, who is receiving benefits in connection with a mastectomy and who elects breast reconstruction in connection with such mastectomy, shall be eligible to receive coverage for the following: Breast Reconstruction Surgery and reconstruction of the other breast to produce symmetrical appearance. Prostheses. Breast Cancer Patient Protection Act 2003 Requires a minimum of 48 hours of hospital stay for patients having mastectomy. Breast Cancer and the Health Care Law Ensures that individuals with a history of breast cancer are no longer denied health insurance coverage because of a pre-existing condition. Covers mammograms starting at age 40. Covers BRACA1, BRACA 2, genetic testing and counseling for women with a history of breast and ovarian cancer. 5

7 2006: The Institute of Medicine (IOM) recommended that patients completing primary treatment for cancer receive a Survivor Care Plan (SCP). Based on the Survivorship work of both Drs. Mullan and Miller (published in 1985) Purpose of a SCP is to help coordinate care and improve outcomes. 2015: The American College of Surgeons Commission On Cancer established a practice standard requiring that accredited healthcare organizations provide SCP to cancer survivors. January 2015 Fortunato Breast Mather Hospital began using a SCP designed by an inter-professional healthcare team. Although SCPs are provided to cancer survivors, little research has been conducted to identify cancer survivors use of SCPs and associated benefits. One recent study (Nicolaije, etal. 2015) found no evidence of benefit of SCPs on patient satisfaction with care received or patients knowledge of their diagnosis or treatment plan. Furthermore, SCPs increased patients anxiety level(s) and associated costs due to increased visits to care providers.. Therefore In , an inter-professional healthcare team conducted an IRB-approved research study examining patients perceptions of the Breast Cancer Survivor Care Plan (SCP) the Fortunato Breast Center of Mather Hospital. 1. Identify how women with breast cancer use their SCP. 2. Identify the Level of Benefit assigned to the SCP by women with breast cancer. 3. Describe recommendations voiced by women with breast cancer for: Improving the SCP (format/content, etc.). Best ways to use the SCP. 4. Determine if there is an association between: Age of women with breast cancer and Level of Benefit assigned to the SCP. Way in which SCP is used. Recommendations (improving and using SCP). 6

8 Non-experimental study. Mixed Methods (quantitative and qualitative). Survey: developed by the researchers, contained: One Likert scale question (assigns Level of Benefit to SCP. (Scale of 0-5 points) Four open-ended questions. Women >18 years or older, diagnosed with breast cancer. December 2014 and August (Convenience sample). Diagnosed at the Fortunato Breast Center. Potential sample size was 30 women. Survey with cover letter (study description and invitation to participate) and consent form mailed to potential subjects homes...after being discussed with each potential subject by Principal Investigator. 15 women (50%), of the 30 women diagnosed with breast cancer (2015), consented to participate as subjects in the study. Ages: years (Mean = 64.3; Median = 69) Both the mean and median age of the women in the study were higher than the age of women diagnosed with breast cancer in the USA (61years). Possible reflection of the aging population in the area surrounding Mather Hospital in Port Jefferson. N.Y. 7

Age Distribution: Total = 15 subjects 5 subjects = Silent Generation (71-91 years).

Nine (60%) of the subjects were 65 or older. The assigned SCP Benefit Score was 3.

A correlation was used to determine if there was a relationship between age of the subjects and

9 Age Distribution: Total = 15 subjects 5 subjects = Silent Generation (71-91 years). 5 subjects = Baby Boomers (52-72 years). 5 subjects = Generation X (37-51 years). Nine (60%) of the subjects were 65 or older. The assigned SCP Benefit Score was 3.2 (mean) and 4 (median). Indicates that there was opportunity for improving the SCP. A correlation was used to determine if there was a relationship between age of the subjects and assigned SCP Benefit Score. Pearson s r of and P value of 0.93 Therefore, no statistically significant relationship was demonstrated between subject s age and assigned benefit score. 8

10 Qualitative data analysis: Asher Consulting, LLC in Germantown, Maryland. Dr. Asher Beckwitt PhD, Qualitative Statistician. Line-by-line technique (N-vivo) that indexes each line of the subject s responses. Once responses are indexed, statistician reviews the codes and combines like codes. Codes are searched and an outline of the codes is generated. Codes interpreted into major and minor themes for each question. I am not interested in wearing a survivor label, nor anything pink. Thoughts? If the Breast Cancer Survivor Care Plan is beneficial to you, please describe WHY it is beneficial It condensed my treatment and kept me focused on what I need to do. It is nice to have all the important information in one place for future reference. If I change Dr s I have all the information that I need. 9

11 Please describe HOW you are using the care plan. I am personally using it as a mean of my healing process. By reading the dates of treatments, surgery, etc. I get the mental picture of a path to recovery. I ve used the Plan when attending medical visits and the history of my illness needs to be listed on medical forms. It gives the doctors a telescopic view of my medical history. Please share your recommendations on HOW the care plan might be improved for use by yourself and fellow women who are breast cancer survivors I make photocopies to be included in my medical record when I visit new doctors. I don t have to grope for dates. Would like to have more nutritional information. Make dates larger and use dark print. This way, the dates will jump out of the paper. Some of us are getting old eyes and need glasses to focus better. Please share your recommendations on HOW the Care Plan can best be utilized by fellow women who are breast cancer survivors First of all, file the plan where you can find it. Don t stick it in a drawer and forget about it the way I initially did. The care plan saves time recalling dates (dates some of us cancer patients would rather forget). It s an excellent idea. Thanks for putting it together. 10

12 Based on feedback from women with breast cancer, the information identified in the research study was used to: 1. Revise the Breast Cancer Survivor Care Plan. (Font enlarged, more evidence-based information on proper nutrition, exercise, stress management; support groups and educational lectures, etc. 2. Enlarge section on follow-up care (schedule of appointments with healthcare providers. 2. Create electronic links on communication devices. 3. Develop a List of Best Practices for using the Survivor Care Plan(SCP). Research to identify if changes made in the SCP are perceived as beneficial to women with breast cancer (same sample). Importance of feedback to women participating in research study. Use interview and focus group methods to explore the meaning of having breast cancer and being a cancer survivor. (Qualitative research) Breast cancer SCP research with men diagnosed with breast cancer and other disparate and understudied groups. (Study issues related to social justice, health equity, value-based care). Expand research to multiple sites/locations. Conduct power analysis to determine appropriate sample size for statistical significance/generalizability of findings. (Quantitative research) Publish research findings. 11

Enhancing Quality of Life for Cancer Survivors in South Dakota. Outcomes from the South Dakota Cancer Survivorship Program

Enhancing Quality of Life for Cancer Survivors in South Dakota Outcomes from the South Dakota Cancer Survivorship Program The South Dakota Survivorship Program was funded through cooperative agreement