Addressing Survivorship Issues for Women with Breast Cancer: An Emphasis on Sexuality

1
Addressing Survivorship Issues for Women with
Breast CancerAn 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 OBrien 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
Patient Survey (cont)

• 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)

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
• Ø      Pain with intercourse
  34 (61) 12 (21) 15 (27)
  1 (1)
• Ø      Other Pain 39
  (70) 15 (27) 6 (11)
  1 (1)
• Ø      Loss of Sex Drive
  26 (46) 13 (24) 27 (48)
  1 (2)
• Ø      Loss of Desire
  26 (47) 12 (22) 27 (48)
  1 (2)
• Ø      Difficulty reaching orgasm 24
  (42) 17 (30) 15 (27)
  1 (1)
• Ø      Hot Flashes
  23 (40) 14 (24) 32 (57)
  1 (2)
• Ø     Vaginal Dryness
  20 (35) 8 (15) 37 (67)
  2 (4)
• Ø      Fatigue 21 (38) 28
  (50) 27 (48) 2 (3)
• Ø      Vaginal Discharge
  38 (68) 4 (8) 4
  (8) 1 (2)
• Ø      Change in Body Image 25
  (44) 8 (14) 27 (47)
  1 (2)
• Ø      UTIs
  44 (77) 2 (4)
  3 (6) 1 (1)
• Ø      Fertility Concerns 42 (75)
  1 (1) 1 (2) 1 (1)
• Ø      Depression 28 (50) 14
  (25) 14 (25) 1 (2)
• Ø      Stress 8 (33)
  18 (32) 21 (39) 2
  (3)
• Ø      Communication Probs 30
  (53) 9 (16) 10 (18)
  1 (1)

13
Women sought information from the following
professionals

• Ø      Medical Oncologist
  20 (36)
•    Radiation Oncologist
  6 (10)
• Ø      Surgeon 4 (8)
• Ø      Ob/Gyn 32 (57)
• Ø      Psychiatrist
  6 (10)
• Ø      Family Physician 28 (50)
• Ø      Physician (other) 3 (5)
• Ø      Nurse Practitioner 8 (15)
• Ø      PA 6
  (11)
• Ø      Nurse Cancer Center
  10 (18)
• Ø      Clinical Nurse Specialist 3 (5)
• Ø      Nurse Other 3 (6)
• Ø      Social Worker Cancer Center 2
  (3)
• Ø      Social Worker/Counselor-Other 7
  (13)
• Ø      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?

• Didnt 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
  dont 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
• (12) Not at all/Very Little (3) Somewhat
  (45) 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 dont know the
  answers other than life isnt perfect and wasnt
  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
(No Transcript)
22
Nurse Survey The Professional Perspective

• N26 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 (45) 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 (12) Not at all/Very Little
  (3) Somewhat (45) Very/Extremely
• 1 2
  3 4 5
• Ø      Depression 12 (3)
  23 (6) 65
  (17)
•  Loss of Sex Drive 15 (4)
  19 (5) 65 (17)
• Ø      Change in Body Image 8 (2)
  15 (4) 77 (20)
• Ø      Loss of Desire 19 (5)
  31 (8) 58 (15)
• Ø      Vaginal Dryness 15 (4)
  23 (6) 62 (16)
• Ø      Vaginal Discharge 23 (6)
  35 (9) 42 (11)
• Ø      Vaginal Stenosis 35 (9)
  27 (7) 39 (10)
• Ø      UTIs 31 (8)
  19 (5) 50 (13)
• Ø      Painful Intercourse 19 (5)
  35 (9) 46 (12)
• Ø      Fertility Issues 23 (6)
  23 (6) 54 (14)
• Ø      Hot Flashes 27 (7)
  31 (8) 42 (11)
• Ø      Stress 12 (3)
  31 (8) 58 (15)
• Ø      Change in Sensations 27 (7)
  31 (8) 42 (11)
• Ø      Fatigue 19 (5)
  19 (5) 62 (16)
• Ø      Pain 19
  (5) 15 (4) 65
  (17)
• Ø      Alteration in Relationships 19 (5)
  27 (7) 54 (14)
• Ø      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 (N26)

• Never 27 (7)
• Rarely 46 (12)
• Occasionally 19 (5)
• Usually 4 (1)
• Always 0

• 58 - not enough time
• 35 - the patient didnt ask
• 19 - were embarrassed
• 27 - didnt feel comfortable with the
  information
• 58 - didnt know enough about it
• 54 - didnt 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 its importance to patients.
• Mary Hughes
• 2009 ONS Mara Mogensen Flaherty Lectureship

30
First Public Endeavor after NENY Komen grant
receivedExhibit at 13th 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 RNs
• 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_at_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

• 1Strongly Agree 2Agree 3Not Sure
  4Disagree 5Strongly Disagree
• 1. I feel comfortable with my knowledge of
  how cancer/its treatments may affect my (or my
  partners) sexuality.
• 2. I have enough information to have a
  conversation with my HC team about how treatment
  may affect my (partners) 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 3Not Sure 4
  Disagree 5Strongly Disagree
• 1. I feel comfortable with my knowledge of
  how cancer/its
• treatments may affect my patients
  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 1Poor 2Fair 3
  Good 4Very Good 5Excellent
• 1 2 3
  4 5
• Define Sexuality and Intimacy.
• Identify the impact of cancer
• treatment on sexual self.
• Describe the options to help manage
• difficulties with sexuality
  intimacy.
• 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) doesnt
  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
(No Transcript)