Presentation is loading. Please wait.

Presentation is loading. Please wait.

Addressing Survivorship Issues for Women with Breast Cancer: An Emphasis on Sexuality Elli Collins, RN, MS, OCN, CBCN Oncology Clinical Nurse Specialist.

Similar presentations


Presentation on theme: "Addressing Survivorship Issues for Women with Breast Cancer: An Emphasis on Sexuality Elli Collins, RN, MS, OCN, CBCN Oncology Clinical Nurse Specialist."— Presentation transcript:

1 Addressing Survivorship Issues for Women with Breast Cancer: An Emphasis on Sexuality Elli Collins, RN, MS, OCN, CBCN Oncology Clinical Nurse Specialist Kathryn Bracero, RN, OCN Supervisor, Oncology Services Stacey LaFave, MS Oncology Social Worker

2 CVPH Medical Center

3 The FitzPatrick Cancer Center

4 A Quality Improvement Initiative Purpose of Project: To increase access to appropriate support and services to address breast cancer survivors’ concerns regarding sexuality and intimacy issues

5 Background  More than 11 million cancer survivors  Need to address survivorship issues, not just immediate side effects of treatments  Mandated by 2015  Facilitator of “Treasure Chests” (BCSG) since 1986  Have received much feedback, comments, concerns over the years – often r/t sexuality issues  Periodic programs for survivors as part of TC meetings (i.e. Shar-ring telephone conference; Dr. Patti O’Brien; generalized discussion at meetings)  Still a recurring theme by women cancer survivors (not just breast)

6 Turning Point - 2008  “Survivorship Education for Quality Cancer Care Conference” – City of Hope - 2008 – 2 staff attend  Focus of monthly Nursing Inservice Education on Survivorship Issues – 2009  Breast Cancer Survivors invited to be part of the Sexuality nursing inservice – share their stories  Informative articles distributed to nursing staff  Significant impact to staff of survivor comments  Decided to look at avenues to pursue this topic  2010 – decide to investigate grant possibilities

7 Main Objective Our main objective at the time - to apply for grant funding to address this quality improvement initiative

8 Fall - 2010  Decide to pursue Susan G. Komen grant (NENY Affiliate)  Grant application deadline – November 2010  Kathy, Stacey and Elli begin to brainstorm – time crunch  Need to collect data to verify the lack regarding this under-addressed topic (Needs Assessment)  Two 5-point Likert Scale surveys developed; one for survivors; one for nurses  Surveys were not tested for validity or reliability – limited time frame – needed information

9 Methods  Patient Survey (needs assessment) mailed to 800 breast cancer survivors  Patient Survey also emailed to over 300 (of the same) women with breast cancer (alerting them about the mail)  Nurse Survey (needs assessment) emailed to Director and Clinical Coordinator of the Inpatient Oncology Unit (R5) to distribute to staff on the 3 shifts  Nurse Survey given to each nurse in Cancer Center  Deadline indicated (October 8, 2010).

10 Results of Patient Survey  178/800 surveys returned (22% response rate/in 2-3 week time frame)  Demographics: * Year since diagnosis: ~ 0-1 yr: 8% (15) ~ 1-3 yrs: 19% (34) ~ 3-5 yrs: 15% (26) ~ 5-10 yrs: 25% (45) ~ 10 + yrs: 32% (57)  Currently receiving treatment (including HT): * Yes 27% (48) * No 68% (121) * Blank 4% (8) (NOTE: We did not ask age.)

11  Treatments they had: * Lumpectomy 63% (113) * Mastectomy 33% (58) * Chemotherapy 45% (80) * Radiation Therapy 69% (122) * Hormonal Therapy 29% (51) * Reconstruction 10% (17) * Other 2% (5) (tamoxifen, arimidex, medication) * Blank 1% (1) Patient Survey (cont)

12 Survivors were asked to Rate the SIGNIFICANCE of each of 15 issues r/t sexuality or intimacy: (1 & 2) Not at All/Very Little; NA= No Answer, but box marked (3) Somewhat/Occasionally; No boxes checked at all: 11% (20) (4 & 5) Very Much/All the Time 1 & 2 3 4 & 5 NA  Pain with intercourse 34% (61) 12% (21) 15% (27) 1% (1)  Other Pain 39% (70) 15% (27) 6% (11) 1% (1)  Loss of Sex Drive 26% (46) 13% (24) 27% (48) 1% (2)  Loss of Desire 26% (47) 12% (22) 27% (48) 1% (2)  Difficulty reaching orgasm 24% (42) 17% (30) 15% (27) 1% (1)  Hot Flashes 23% (40) 14% (24) 32% (57) 1% (2)  Vaginal Dryness 20% (35) 8% (15) 37% (67) 2% (4)  Fatigue 21% (38) 28% (50) 27% (48) 2% (3)  Vaginal Discharge 38% (68) 4% (8) 4% (8) 1% (2)  Change in Body Image 25% (44) 8% (14) 27% (47) 1% (2)  UTI’s 44% (77) 2% (4) 3% (6) 1% (1)  Fertility Concerns 42% (75) 1% (1) 1% (2) 1% (1)  Depression 28% (50) 14% (25) 14% (25) 1% (2)  Stress 8% (33) 18% (32) 21% (39) 2% (3)  Communication Probs 30% (53) 9% (16) 10% (18) 1% (1)

13 Women sought information from the following professionals:  Medical Oncologist 20% (36)  Radiation Oncologist 6% (10)  Surgeon 4% (8)  Ob/Gyn 32% (57)  Psychiatrist 6% (10)  Family Physician 28% (50)  Physician (other) 3% (5)  Nurse Practitioner 8% (15)  PA 6% (11)  Nurse – Cancer Center 10% (18)  Clinical Nurse Specialist 3% (5)  Nurse – Other 3% (6)  Social Worker – Cancer Center 2% (3)  Social Worker/Counselor-Other 7% (13)  No boxes checked 38% (67) Interesting!

14 How satisfied were they with the information from the professionals?  Never asked 9% (16)  Very Little 10% (17)  Somewhat 17% (31)  Very Much 28% (50)  Extremely Satisfied 18% (32)  No box checked 17% (31)

15 Why did they not speak with a professional?  Didn’t realize they could 6% (10)  No one asked me 13% (23)  Was uncomfortable/embarrassed 12% (21)  Did not realized the two were connected 12% (21)  No box checked 61% (109)  Other: I associated the problem with age; I don’t worry about small things; had no need to; no problems I could not handle; joint pain; did not think it was necessary; was not interested; holistic health counselor

16 From what other individuals did they seek support/answers?  Spouse/Partner 37% (65)  Friend 34% (61)  Family Member 25% (44)  Another BC Survivor 25% (44)  Support Group 11% (19)  National Organization (800#) 2% (3)  Internet 12% (22)  FCC Literature 20% (36)  Other  No box checked 31% (55)

17 Asked about the literature at FCC: Yes No No Ans.  Were they given literature? 40% (71) 52% (92) 7% (13)  Did literature answer question? 34% (60) 10% (18) 54% (96)  Of note: Every exam room has the ACS booklets on Sexuality in the literature wall racks. We did not ask if they took the literature on their own, only if it was given to them.

18 Asked about the importance to them of being asked about sexuality concerns by the different professionals Key: (1&2) Not at all/Very Little; (3) Somewhat; (4&5) Important/Very Important 1 & 2 3 4 & 5 No Ans. Oncologist 27% (49) 22% (40) 44% (79) 9% (16) FCC Nurse 25% (46) 18% (32) 47% (83) 7% (13) Getting info 22% (40) 12% (22) 51% (91) 12% (21) support, referrals from FCC

19 Some telling comments: Many of these issues appear after treatment, as well as during, so they need to be discussed ASAP! It is a difficult thing to discuss especially with a male physician, so it would be easier if the doctor broached the subject I am inhibited, uncomfortable talking about sex/sexual matters Although at this point I am thankful to be alive and enjoying grandchildren, etc, the sexual issue is a horrible dark cloud that hovers over my long term marriage. The depression waxes and wanes, even with medication. The neuropathy is agony sometimes even with meds. I don’t know the answers other than life isn’t perfect and wasn’t meant to be. Just thankful that there are good days mixed in with the bad. The Lord is my strength and help amidst it all

20 Comments (cont) I never realized my breast cancer had any relation to this problem I think there should be more emphasis on this subject as it affects many of our personal lives and relationships Discussed vaginal symptoms with NP. Did not realize others were connected to breast cancer Sexuality kind of went out the window. On a scale of importance after this diagnosis, it is important and should not be neglected Repeatedly told- nothing could be done – “live with it”, join a support group Thanks for caring Support patients every way you can And more…

21

22 Nurse Survey The Professional Perspective N=26 surveys returned from FCC/R5 Small sample size Did not delineate surveys by unit. Do not know total number given out. We did not measure knowledge – asked about their perceptions of their knowledge about therapy effects on sexuality/intimacy

23 How familiar were they with effect of cancer and the therapies on sexuality/intimacy? Key: (1 & 2) Not at All/A Little; (3) Somewhat; (4&5) Very/Extremely 1 & 2 3 4 & 5  Cancer/The Disease 15% (4) 42% (11) 42% (11)  Surgery 12% (3) 50% (13) 39% (10)  Hormonal Therapy 27% (7) 46% (12) 27% (7)  Chemotherapy 27% (7) 35% (9) 39% (10)  Radiation Therapy 27% (7) 39% (10) 35% (9)  Targeted Therapy 39% (10) 35% (9) 27% (7)

24 To what degree aware that the treatment side effects can impact sexuality/intimacy: Key: (1&2) Not at all/Very Little; (3) Somewhat; (4&5) Very/Extremely 1 & 2 3 4 & 5  Depression 12% (3) 23% (6) 65% (17)  Loss of Sex Drive 15% (4) 19% (5) 65% (17)  Change in Body Image 8% (2) 15% (4) 77% (20)  Loss of Desire 19% (5) 31% (8) 58% (15)  Vaginal Dryness 15% (4) 23% (6) 62% (16)  Vaginal Discharge 23% (6) 35% (9) 42% (11)  Vaginal Stenosis 35% (9) 27% (7) 39% (10)  UTI’s 31% (8) 19% (5) 50% (13)  Painful Intercourse 19% (5) 35% (9) 46% (12)  Fertility Issues 23% (6) 23% (6) 54% (14)  Hot Flashes 27% (7) 31% (8) 42% (11)  Stress 12% (3) 31% (8) 58% (15)  Change in Sensations 27% (7) 31% (8) 42% (11)  Fatigue 19% (5) 19% (5) 62% (16)  Pain 19% (5) 15% (4) 65% (17)  Alteration in Relationships 19% (5) 27% (7) 54% (14)  Communication Problems 19% (5) 31% (8) 58% (15)

25 Comments about the Nurse Survey: It is reassuring to see that of the 3 columns, the greatest percentage still falls in the “feel very” or “extremely aware” category for the side effects. On flip side, totaling the other 2 columns still indicates a need for education. The specific effects of specific drugs or therapies was not separated out.

26 Frequency with which the nurse asked patients about sexuality issues: (N=26) Never 27% (7) Rarely 46% (12) Occasionally 19% (5) Usually 4% (1) Always 0  58% - “not enough time”  35% - “the patient didn’t ask”  19% - “were embarrassed”  27% - “didn’t feel comfortable with the information  58% - “didn’t know enough about it”  54% - “didn’t know the resources”  65% - “lack of privacy”

27 Extent to which the nurse felt comfortable discussing the topic with patient/spouse: 46% (12) – “not at all” or “a little” 35% (9) – “somewhat” 19% (5) – “very” or “extremely comfortable” We had work to do!

28

29 Clinical Relevance “We talk about everything with our patients – bowel and bladder habits, nausea and vomiting, but we do not address sexuality issues. It is the last frontier for us…” …”It is hard for us to think about sexuality and cancer at the same time because they do not seem to go together. When you think about sexuality, you usually use positive or neutral words, but cancer is usually associated with negative words. We are very focused on treating cancer and forget about sexuality and it’s importance to patients.” ~ Mary Hughes 2009 ONS Mara Mogensen Flaherty Lectureship

30 First Public Endeavor after NENY Komen grant received: Exhibit at 13 th Annual Treasure Chests Soiree - May 26, 2011

31

32 Exhibit at CVPH Community Lecture Series – Sept. 21, 2011

33 Overall Goals of the Grant: Apply various strategies to educate health professionals within the Cancer Center, CVPH Medical Center, the community, and breast cancer survivors and their partners pertaining to sexuality/intimacy issues related to cancer and its therapies Hire a consultant (Dr. Sage Bolte) to: * Evaluate our needs * Help us introduce sexual health assessments into the nursing assessments * Provide 2 days of intensive education to 2 previously identified FCC RN’s * Present an evening educational dinner program (Oct. 24) to women with breast cancer, their partners and various health professionals

34 Advance Publicity Included brochure mailings to survivors, professionals; newspaper article; other local publicity

35 Addressing the Elephant in the Room: Sexuality, Relationships & Cancer Sage Bolte, PhD, LCSW, OSW-C* Life with Cancer ® sage.bolte@inova.org *Some of the slide content developed by S. Bolte and K. Tierney, 2011, ONS Regional Conferences

36 Registration Desk at “Sexuality Dinner Program” – October 24, 2011

37 October 24 Preliminary Program Results  Publicity ~1000 brochure invitations mailed to cancer survivors ~200 brochures mailed to health professionals Email reminders sent to both groups Flyers distributed and posted all over CVPH/FCC  Dinner Program Attendees: N= 75 24 Breast Cancer Survivors 17 Partners 2 Physicians (Med Onc, Onc. Psych.) 15 Nurses 5 Counselors/Social Workers 7 Other Allied Health Profls (Pt Nav) 5 Student Nurses

38 Pre/Post Test Questions for Breast Cancer Survivor or Partner 1=Strongly Agree; 2=Agree; 3=Not Sure; 4=Disagree; 5=Strongly Disagree 1. I feel comfortable with my knowledge of how cancer/it’s treatments may affect my (or my partner’s) sexuality. 2. I have enough information to have a conversation with my HC team about how treatment may affect my (partner’s) sexuality. 3. I feel competent in creating change in at least one area of my sexual health and/or intimate relationships. 4. I have enough information to have a conversation with my partner about how cancer has affected my sexuality.

39 Pre/Post Test for Health Care Professionals 1= Strongly Agree; 2= Agree; 3=Not Sure; 4= Disagree; 5=Strongly Disagree 1. I feel comfortable with my knowledge of how cancer/it’s treatments may affect my patient’s sexuality. 2. I have enough information to have a conversation with my patients about how treatment may affect their sexuality. 3. I feel competent in creating change in at least one area of my patients’ sexual health and/or intimate relationships. 4. I have enough information to have a conversation with my patients about how cancer may have affected their sexuality.

40 Participant Evaluation Form (Survivors/Partners and Professionals together) The extent to which the objectives were met: Key: 1=Poor 2=Fair 3= Good 4=Very Good 5=Excellent 1 2 3 4 5 1.Define Sexuality and Intimacy. 2.Identify the impact of cancer treatment on sexual self. 3.Describe the options to help manage difficulties with sexuality & intimacy. 4.Increase comfort with addressing sexual health issues. Data is in process of being summarized.

41

42 Conclusions so far… Sexuality/Intimacy Issues ARE a concern to breast cancer survivors Survivors want the subject addressed Nurses ARE uncomfortable with the subject Nurses do feel a lack of knowledge Although the grant is for “breast cancer patients,” the information and resources are applicable to patients with any type of cancer Providing free programs (e.g. October 24) doesn’t necessarily mean attendance by professionals & patients will be incredible A variety of strategies may be needed to address this topic for patients and professionals (e.g. individually, smaller groups)

43 Progress: Consultant Recommendations October 24-25: Successful intensive 2 days with Dr. Sage Bolte  Work with the Oncology Clinical Nurse Specialist in the implementation process (beginning with patient contact shortly after diagnosis and transitioning to nurse contact at first oncology appointment)  Determine the best way to introduce to the nursing staff, simple, practical ways in which to incorporate sexual health assessment into routine nursing assessments  Utilize meetings to help the Cancer Center nurses to become more comfortable with the topic  Encourage use of the two “sexuality resource nurses” as necessary

44 Consultant Recommendations (cont)…  Create resource list for patients  Increase awareness of types of products & resources available locally (i.e. sample lubricants, websites, literature, etc.)  Evaluate and revise our nursing assessment “form” incorporating more of a “Quality of Life” assessment format (& including sexuality)  Review our educational materials and revise accordingly to include sexuality and other QOL issues.  Incorporate use of a Distress Scale with sexual health assessment  Eventually incorporate into Survivorship Care Plan  And more…!

45 Additional Planned Grant-Funded Program Half-Day Survivorship Program for survivors (March 2012)  Scheduled Keynote is Susan Leigh, RN, BSN  Plan to address several “hot topics” including Sexuality, Nutrition, and Exercise. Presenters in the process of being confirmed.  Offer participants the opportunity to experience Complementary Therapies including massage, healing touch, reiki and reflexology at the program  Get feedback from participants - evaluate program

46 Closing Remarks This initiative is still a work in progress… Continue to evaluate our methods and strategies. What have we have learned? Have we made a difference?!! Communication in every direction is key!

47 Thank You!

48


Download ppt "Addressing Survivorship Issues for Women with Breast Cancer: An Emphasis on Sexuality Elli Collins, RN, MS, OCN, CBCN Oncology Clinical Nurse Specialist."

Similar presentations


Ads by Google