Addressing and Assessing Sexual Health: A quality of life i - PowerPoint Presentation

Slide1

Addressing and Assessing Sexual Health: A quality of life issue

Sage Bolte, PhD, LCSW, OSW-C, CSTDirectorLife with Cancer, Schar Cancer InstituteSage.Bolte@inova.org

© Bolte, S., 2016. Please contact author to distribute or utilize slide content.Slide2

Being diagnosed with cancer is a life altering experience

© Sage Bolte 2016Slide3

© Sage Bolte 2016

Sexuality and Intimacy are critical pieces of quality of lifeSlide4

Objectives

Define the sexual self in the context of cancerIdentify at least two ways that cancer and its treatments impact an individual’s sexual selfDefine the ExPLISSIT model for assessment of sexual health concernsIdentify at least two interventions to address the sexual concerns of patients

© Bolte, S., 2016. Slide5

© Bolte, S., 2013.

What is the Sexual

Self*?

1. Information or Event:

External events that affect sexual function or affect aspects of sexuality (e.g., disfigurement, positive sexual experiences, etc.)

2. Sexual Esteem

: Cognitive, Attitudes, Sexual Schemata

3. Sexual Affect/Feelings:

Feelings

about sexuality and function: Includes distress or negative/positive

.

CANCER

The Experience of Cancer can bring multiple events

New information has

to

be absorbed into the sexual self.

The sexual self could stay stable, or could experience a large effect.

4

. Sexual Behavior and Function

*

Bolte, S. (2010). The Sexual Self of Young Adult Cancer Survivors as Compared to their Healthy Peers. Slide6

Survivor’s Quality of Life Issue

QOL studies have identified cancer survivors concerns including altered sexuality incidence of altered sexuality is high and can persist for yearsaltered sexuality negatively affects the QOL of the cancer survivor AND the intimate partner(s)10 – 100% of patients will experience some form of sexual dysfunction

Carelle

, N. (2002)

Cancer,

95:155Slide7

How does cancer impact intimate relationships and the sexual self?Physically, Psychologically and SociallyTreatment Side Effects

Emotional Side Effects

© Sage Bolte 2013Slide8

Etiology of Altered Sexuality*

the cancerpsychological distress associated with the diagnosis and treatment for

both partners

cancer therapy

different therapies result in different alterations

side effects and complications

alterations in relationships during and following treatment

© Bolte, S., 2013.

*Content co-developed by K. Tierney and S. Bolte, 2012, for ONS regional lecturesSlide9

Physiologic Alterations in Men

neurovascular damage resulting in erectile disorder (ED)

chemotherapy agents, radiation, surgery

endocrine changes

decreased testosterone

decreased libido, osteoporosis, vasomotor flushing

infertility

fatigue and decreased physical stamina

male children treated for cancer may experience delayed or absent pubertySlide10

Physiologic Alterations in Women

treatment side effects (i.e. chemo brain, joint discomfort, neuropathy, hair loss, etc).acute or premature ovarian failure

surgical scaring, lymphedema, appearance & sensation

consequences of ovarian failure

vaginal alterations, vasomotor symptoms, infertility, osteoporosis, hot flashes, mood changes

“natural” menopause vs. premature ovarian failure

fatigue and decreased physical staminaSlide11

Psychological Dimension

emotional distress (15 – 25 % higher)depression, anxiety

sense of vulnerability

decreased self esteem and confidence

body image changes

changes in relationships and/or social supports

infertility

altered image of femininity/masculinitySlide12

Social Dimension

relationship

issues prior to cancer to not magically go away

partner’s emotional distress

sadness, anger, sense of uncertainty about the future

partner’s sexual health

role changes

move from being “equal partners” to patient/caregiverSlide13

LGBTQThis could be an entire workshop in itself! And we are not even addressing all the psychosocial needs.

May have distrust in health care providersIs it safe to come out to providers?Providers often lack education and knowledge about the LGBT community

Fertility discussions may be overlooked

Lots of assumptions made. Not often asked what type of sexual activities in which they are engaged

Nurses & Social Workers may have high comfort but may lack education

However, oncology professionals should be at the front lines changing this

Resource: http://www.cancer-network.org/

© Bolte, S., 2013. Slide14

“The Sounds of Silence”

reluctance on the part of the health care provider

and

the patient

85% of adults want to discuss sexual functioning with their physician

71% believe their physician lacks the desire and time to discuss sexual issues

68% worry they would embarrass their physician

76% feel treatments do not exist for their sexual dysfunction

Marwick,1999, JAMA,281:2173- 2174Slide15
Slide16

Integrating Sexuality into Daily Practice Assessments

Routine Quality-of-Life ScreeningInterview and assessment (i.e. Ex-PLISSIT model)Are we gathering any information on sexual history or trauma?

Questionnaires

:

Cancer Rehabilitation and Evaluation System (CARES)

Functional Assessment of Cancer Therapy (FACT)

Derogatis

Inventory of Sexual Functioning (DISF)

Satisfaction with Life Domains Scale for Cancer (SLDS-C), etc.

Depression Anxiety and Stress Scale, short form (DASS)

Body Esteem ScaleInternational Index of Erectile Function (for men)Brief Index of Sexual Functioning for WomenFemale Sexual Function Index (FSFI)Create your own Likert scale with a question inquiring about sexual satisfaction (i.e. “Over the past three months, how sexually satisfied do you feel overall?” )Slide17

Models of Assessment

Examples of assessment models inBolte, S.,

Anrig

,

C.

2015.

Sexuality and

Cancer

.

In G. Christ, C. Messner & L. Behar (

Eds

),

Handbook of Oncology Social Work.

New York, NY: Oxford University Press.

© Bolte, S., 2016. Slide18

Ex-PLI

SSIT Model

P

ermission at every stage and every visit

assessment

L

imited

I

nformation

education

provide written informationSpecific

Suggestionscounseling

Intensive T

herapyreferralsneed to develop a network for referrals

© Bolte, S., 2013. Slide19

Permission

…assessmentobtain

permission

to initiate sexual discussion and

legitimize sexual concerns

r

elationship neutral language

inform patient/partner that discussion of sexuality is part of routine assessment

be aware of cultural and religious issues

inquire about previous sexual trauma/history

assessment

Has this illness affected the way you feel about yourself as a man/woman?

Has this condition interfered with your being a husband/wife/father/partner?

Has this condition affected your ability to perform sexually? Slide20

Limited Information

…education

provide

limited information

on the possible effects of the cancer and treatment on sexual functioning

provide written information or a referral list

normalize the information by providing specific examples or use statistics

“Many patients I have worked with describe anxiety regarding sexual performance after treatment”

Changes and concerns in body image are commonly reported”

“Concerns about fertility are common”Slide21

Specific Suggestions…counseling

provide specific suggestions for the identified concern

provide prescriptions (or sample products) as needed/available

“I provide prescriptions for dildos so the woman does not need to visit a sex shop” Marisa Weiss, MD

include sexual partner

facilitates a discussion between the couple and normalizes potential problems

may identify the partner’s concerns

enlists the partner’s support

© Bolte, S., 2013. Slide22

Hypoactive Sexual Desire Disorder

counseling and educationaddress relationship issues

i

dentify expectations and redefine “libido”

shift from body response to brain desire

plan for time of day when fatigue/pain is lowest

assess and treat

anxiety, depression, body image changes

other sexual dysfunctions

Flibanserin

(Addyi

)Originally developed as an antidepressant, flibanserin

(Addyi) is approved by by

FDA as a treatment for low sexual desire in premenopausal women.

cognitive behavioral therapy

cognitive restructuring and communication training

relaxation training

couple based therapy is most effectiveSlide23

Hormone Therapy for Ovarian Failure

estrogen dose is equivalent of 1.25 mg conjugated equine estrogen + progestin in women with an intact uterusrecently estrogen deficient, begin at low dose x 1 month and increase to full dose at 2

nd

month

estrogen deficient for more that 12 months, begin with low dose and slowly increase over 6 months to maintenance dose

effective in relieving many symptoms of menopauseSlide24

Hormone Therapy

topical estradiol gel

0.1% (

Divigel

®

) or .06% (

Elestrin

®

)

decreased frequency and severity of vasomotor symptoms

will not address all aspects of sexual healthSyrjala K. et al (1998)

Journal of Clinical Oncology, 16: 3148

In the 76% of women taking HT52% had arousal problems, 33% experienced dyspareunia

and 46% had problems with orgasmtime to begin HT is critical

© Bolte, S., 2013. Slide25

Non-hormonal Treatment of Hot Flashes**

antidepressantsanticonvulsants

anticholinergics

progestins

vitamin E

soy

black

cohosh

homeopathy

dietary changes

relaxation training

exercise

acupuncture

reflexology

the “

chillow

”

Carpenter, JS. (2005).

Oncology Nursing Forum

, 32:969

Barton D. et al. (2004).

Clinical Journal of Oncology Nursing,

8:39

Low, DT. (2005).

American Journal of Medicine

, 118:98SSlide26

Female Arousal Disorder

androgen therapy in women—controversialFlibanserin (Addyi

)

Originally

developed as an antidepressant,

flibanserin

(

Addyi

) is approved by

by

FDA as a treatment for low sexual desire in premenopausal women.300

ug testosterone patch + estrogen

3 RCT in menopausal women (natural and surgical)significant improvements in desire and number of “satisfying sexual episodes”

2-3 months for improvement to be notedphosphodiesterase

enzyme inhibitors (not shown to be very efficacious)

sensate focus techniques

explore physical touch moving from non-sexual to sexual touching

brief psychotherapy to improve self image and mood. best combination is therapy and medication

Eros-CSlide27

Osphena

Osphena is a daily oral pill to alleviate vaginal dryness. This pill is not estrogen, but is classified as a SERM, or selective estrogen receptor modulator. Ospemifene

specifically targets vaginal tissue and has been shown to alleviate painful intercourse due to vaginal

atrophy.

Stimulates tissue that lines the uterus

NOT a libido booster

Mona Lisa Treatments

© Sage Bolte 2013Slide28

Vaginal Dryness and Dyspareunia

topical or systemic estrogen (if appropriate) vaginal lubricants

Vitamin E, Replens

®

,

Astroglide

®

, Plain yogurt, Coconut oil

vaginal dilators (use with

Kegel

exercises)

intravaginal dehydroepiandrosterone

(DHEA)RCT showed improvement is sexual functioning

assume a position during intercourse to allow control of rate and depth of penetrationprolong foreplay

non-penetrative sexual activity

Mona Lisa treatment

pelvic floor specialistSlide29

Vaginal Dilators

MOISTURIZE, STRETCH, STRENGTHENRecommended use is 3x/weekDilators prescribed by size specific for individuals

Series of dilators may be used to slowly increase size of vagina

(

www.vaginismus.com

) and

assist in learning to relax muscles

Can be used with a anesthetic gel to prevent pain in tender

vulvar

areas (temporary use)

Sexual intercourse and/or vibrators can replace the use of dilatorsWrite a prescription to decrease any embarrassment or shame

Schover, Leslie Sexuality and Fertility After Cancer.

McKee & Schover, Sexuality Rehabilitation 2001Slide30

Erectile Disorder

counseling and educationassess self esteem and body imagereview medication profile (if transplant patient, higher risk of lower testosterone)evaluate concurrent health problems

MUSE or

Caverject

vacuum devices

p

hysical therapy

r

eferral to urologist

assess partners wishes and desires as wellSlide31

Erectile Disorder

testosterone therapy (if allowed)remember to test individuals who are at riskimproves mood, libido and erectile function

testosterone

enanthate

(

Delatestryl

®

)

testosterone

cypionate

(Depo-testosterone®

)100-200 mg IM Q 2-4 weeksSlide32

Phosphodiesterase

Enzyme Inhibitors**

sildenafil

(Viagra

®

)

20 – 100 mg PO on demand

vardenafil

(

Levitra

®)

10-20 mg PO on demandtadalafil (

Cialis®)

10-20 mg PO on demand

2.5 – 5 mg PO daily

Note: important to get permission from partner as well to ensure similar goalsSlide33

Performance Anxiety

provide education on management of ostomy, stoma or other devicesr

eferral for body image challenges

suggest masturbation

may improve confidence and decrease performance anxiety

prolong foreplay

ensures adequate arousal and improves erectile strength and vaginal lubrication

stay very self focused (get comfortable with own body first)

keep focused on sensations, distraction from negative thoughts and performance concerns

communication

use of verbal and nonverbal language

stick figures (safe zone/unsafe zone)

relaxation techniques

sensate focus exercises, deep breathing, massageSlide34

Factors Predictive of a Healthy Sexual Adjustment

good relationship with self and partner before the diagnosis

satisfying sexual relationship(s) before the diagnosis

support from sexual partner

partner’s sexual health

positive sexual esteem

the use of healthy communication:

Fact, feeling, belief and action

© Bolte, S., 2013. Slide35

End of Life

For the couple & family:Clearly outline what self-care activities can be done independently, which require assistance from the partner/family and which require professional help

Set clear boundaries between

caregiving

time and couple/family time

If cognitive ability is affected, capacity for intimacy may be lost and they must develop a new relationship

Encourage partner/family member to lie in bed with person with cancer, hold hands, give foot massage, read a book

Sometimes the most private things, such as helping with self care, can be the most intimate connection between partners

If inpatient - offer and encourage private time

Esmail

,

Esmail

& Munro. 2001 Sexuality and Disability 19:4Slide36

Intensive Therapy…referral

providing intensive therapy surrounding issues of sexuality and sexual dysfunction requires expertise that is beyond the role of most oncology health care providers

a

ny patient with a history of non-consensual sex, sexual abuse or trauma requires a referral to a qualified specialist

know your limits and skills

refer to a trusted network

www.aasect.org

http://www.womenshealthapta.org/pt-locator/

provide support and compassionSlide37

Ex-PLI

SSIT Model

P

ermission at every stage and every visit

assessment

L

imited

I

nformation

education

provide written informationSpecific

Suggestionscounseling

Intensive T

herapyreferralsneed to develop a network for referrals

© Bolte, S., 2013. Slide38

To Summarize….

discuss issues of intimacy and sexuality pre-treatment – EARLY AND OFTEN

g

ive permission to redefine expectations

to diagnosis and treat sexual dysfunction; must assess multiple physiologic, psychological and social variables

a conversation with a health care provider can be therapeutic

advise women to see a gynecologist or pelvic floor therapist early post-treatment to discuss HT, treatments or alternatives

for men experiencing ED, phosphodiesterase enzyme inhibitors are often effective along with counselingSlide39
Slide40

Additional Information & HandoutsSlide41

Diagnosis of Sexual Dysfunction

disorders are characterized by physiologic or psychological changes that adversely influence sexual functioning leading to psychological distress OR stress within relationships

two important components of the diagnosis

adverse effect on sexual functioning caused by physiologic or psychological changes

alteration leads to distress for the individual or within the relationship

Slide42

Body Image Exercises

Identify negative thoughts and try to replace with positive thoughts and affirmationsPractice Positive Affirmations“

I accept my body I will do everything I can to love and help it heal”

My body supports my healing process

Focus on the things that haven’t changed (find three things you like about yourself)

Prayer, Meditation and Relaxation

Celebrate the person you are and the body you haveSlide43

Ostomy concerns

Mini Covers

Basic cotton cover

Must wear underwear

Feminine and Masculine

designed pouches

Sport guard pouch

for high activity,

Flushable

bags

www.cmostomysupply.comSlide44

“What about my ostomy?”

Wear an opaque pouch or pouch coverIf your colostomy requires irrigation, complete before sexual activity wear a closed-end pouch, a minipouch or stoma cap during sexual activity

Worry about the bulk of the appliance

Use a fancy cover

Crotchless panties for women

Tuck it in to a cummerbund, belt, sash or fancy slip, or wear a fitted tshirt or cami to hide

Make sure appliance fits well

Tape it down carefully during activitySlide45

“What about my ostomy?”

Worry about gas or watery dischargeCheck and empty pouch just before sexual activityAvoid food that may cause strong odor or gas

Choose a position for sexual intercourse that protects your ostomy to keep weight off pouch

Assure your partner that the stoma will not get hurt during sexual activity to lower anxiety

Make sure your partner and you remember that gas is natural !!Slide46

Single Individuals

dating and relationshipsfear of not being wantedmyth that sexuality is not a concernfriendships and intimacy are extremely importantfear of being a burden to friends and familyhealthcare providers may dismiss the need to discuss sexualitySlide47

Individuals with Advanced Disease

heightened recognition of lossesneed to redefine sexuality and intimacyneed for intimacy often greater than the need for sexual activityfear of pain, side effects, incontinencehealthcare providers dismiss the need to discuss sexuality

not provided with informationSlide48

Concerns of the Young Adult

dating and establishing relationshipsfertility concernssexual image and body imagehair loss of all types, scars, weight changessocial isolation and withdrawal

m

ay feel different or disconnected from peer group

changes in sexual functioning

m

ost cancer therapies have the potential to alter sexual routines or functionSlide49

Vaginal Dilators

Recommended use is 3x/weekDilators prescribed by size specific for individuals Series of dilators may be used to slowly increase size of vagina (www.myarkadia.com) and assist in learning to relax musclesCan be used with a anesthetic gel to prevent pain in tender vulvar areas (temporary use)

Sexual intercourse and/or vibrators can replace the use of dilators

Get your MD to write a prescription to decrease any embarrassment or shame

Schover, Leslie Sexuality and Fertility After Cancer.

McKee & Schover, Sexuality Rehabilitation 2001Slide50

Permission

Examples of questions broaching the subject of sexRoutine questioning“I always ask whether patients are having any relationship or sexual problems. Your sexual health is an important part of your life. Sometimes an illness or medication can affect your sexuality. How has your relationship been going lately?”

Generalizing

“People diagnosed with cancer may often experience sexual difficulties, such as loss of desire or problems with enjoyment. How have you been affected?”

McInnes, Rosemary MJA 2003; 179: 263–266Slide51

Permission

Normalizing“When a woman receives a diagnosis of breast cancer it’s normal for her to be concerned about how treatment might affect her sex life. What worries have you had?”Using statistics

“Over 60% of men with prostate cancer, report problems with sex, such as difficulty gaining and keeping an erection. What changes have you noticed?”

McInnes, Rosemary MJA 2003; 179: 263–266Slide52

Permission

Specific phrases to help open the discussionCancer often impacts a person’s quality of life on many levels, has this impacted the way you feel about yourself?

Some people who are going through an illness like yours have been concerned about their sexuality.

You have been through so much since your diagnosis. This may affect the way you see yourself as a woman/man.

You must be wondering how all of this will affect you sexually or intimately. Let’s talk about that.

I have heard that during treatment, many women find it hard to feel good about themselves. This illness may have impacted your relationship and other intimate areas of your life.

Other women who have been given this treatment have experienced a dry vagina.

Some men taking this medication have problems getting or maintaining an erection.

Hornden

and

Currow

, MJA 2003: 179 (6

Suppl): S-8 - S11Slide53

Higher negative perception of the impact of cancer on QOL impacted lower overall QOL scores

Age and age at diagnosis did not seem to be significant, however, those younger YA’s did demonstrate higher sexual distress and sexual distress was predictive of overall QOL (p <.004).Path analyses indicated that a lower sexual esteem perception may negatively effect a YA’s positive QOL.Bolte, 2010

The Sexual Self of YA Cancer SurvivorsSlide54

The Sexual Self of YA Cancer Survivors

Age at diagnosis contributes to higher sexual dysfunction and distress in childhood cancer survivors, those diagnosed during adolescence or older demonstrated lower functioning and higher distress (Zebrack et al., 2009).Age and age at diagnosis was not significant for those diagnosed as young adults and sexual function, sexual esteem and sexual distress were all significantly correlated with quality of life measures (Bolte, 2010).

Low sexual function does not necessarily mean high sexual distress, but low sexual esteem and high sexual distress does impact QOL (Bolte, 2010).Slide55

Theme 1. Late effects of treatment continue to interfere with the sexual self.

Theme 2. Physical limitations trigger mental limitations that influence the sexual self.Theme 3. Perceptions of past sexual self influence perceptions of present sexual self.Theme 4. Communication with partners influences perceptions of sexual self.

Theme 5. Medical procedures negatively influence intimate touch.

Theme 6. Communication with health care providers highlights the importance of sexual self.

Bolte, 2010.

The Sexual Self of YA Survivors: Qualitative findingsSlide56

“I guess, side effects of post-treatment like my specific case is, I had a bone marrow transplant [3 years ago] and I have transplant rejection issues called Graft-versus-Host. And it’s – I’m being treated for that, so that’s – it’s also introducing a lot of physical limitations in terms of flexibility and skin – my skin is very tight. I mean, just – like, I have trouble bending down on my knees. So, you know, I mean, just trying to bend in certain positions sometimes is impossible or my skin feels like it’s going to rip. So, I mean, that – I mean, I’m talking – like I said, I’m talking physical limitations [around sexual health] is basically the main thing that cancer introduced for me. But that’s not – it also introduced, I suppose, some mental limitations…Well, obviously the physical limitations are, you know, hammering down on my mental state of mind because, okay, I can’t perform, you know, because of this, this and this. And so, I mean, it’s bogging me down like emotionally sometimes I just don’t – I don’t even feel like trying.” (Bolte, 2010)Slide57

Additional Findings of Interest

We are making strides in providing YA’s with information on fertility, before treatment beginsWe have a ways to go on bringing up and addressing the sexual health concerns and/or diagnosis/treatment effects on YA’s sexual self. Interventions for education and early identification of patient baseline/changes in sexual health need to be part of assessments.

Sexual history of non-consensual sexual incidences was higher for all participants than US reported average (23.9% females and 17.7% males compared to average of 18% and 3%).

What might this imply for the care of our AYA patient?

Awareness of our presence/touch with our patients is criticalSlide58

Risks of Infertility

type of malignancyTesticular cancerHodgkin’s lymphomaagetype of chemotherapy agent / transplant

alkylating

agents most damaging

dose of chemotherapy agent

high dose therapy more toxic to

gonadal

tissue

dose of radiation

© Bolte, S., 2013. Slide59

Fertility Options

For Mensperm cryopreservationICSIintracytoplasmic sperm

injection

For Women

o

ocyte

gift (donor eggs)

30-40% success rate

IVF fresh embryos

30% success rate

IVF frozen embryos

15% success rateIVF frozen mature oocytes

5-10% success rateovarian tissue or fragments

investigationalgonadotrophin-releasing hormones (

GnRH

)

© Bolte, S., 2013. Slide60

Fertility After Treatment

adoption surrogacy (if legal)ongoing assessment of fertilitymay recovermay be counseled to delay having children for a period of time after treatment

c

ertain treatments require strict use of contraceptives

s

afe sex guidelines may be ignored if the patient believes they are infertile

refer to Fertile Hope, LAF, local fertility specialists

e

stablish relationship(s) with local fertility specialists

© Bolte, S., 2013. Slide61

Working with Diverse Populations

The importance of open and neutral languageAsking to be educatedKeeping up with the literatureConnect with community leaders to help educateIdentify religious leaders who would be willing to educate and/or be referral possibilities

© Bolte, S., 2013. Slide62

LGBTjust to get you thinking

Gay men:“good enough” erection may not be good enough for anal sex and safety for anal sex may not be askedBottom or top? Lesbian

e

ducation over safe sex practices may be overlooked

libido and vaginal health changes, early menopause, mood changes, etc.

is vaginal penetration part of her sex play?

Bisexual

u

sually overlooked, unless you specifically ask – often group in “gay or straight” category by providers

need to understand all sexual health implications and understand what kinds of sexual practices might be impacted by treatment.

Transgender/Gender-Nonconforming People and Cancer“While sexual risks vary greatly from person to person, as a whole the trans community

has increased incidence of many of the factors that are associated with unsafe sex – including depression, low self-esteem, relationship abuse, sex

while drunk/high, and sexual abuse/assault. Also, most safe sex information isn’t trans-inclusive

.” (http://www.cancer-network.org/media/pdf/Trans_people_and_cancer.pdf)The use of hormones for MTF and FTM need to be discussed and risk factors/benefits/options openly explored

© Bolte, S., 2013. Slide63

Fear of Rejection

Dating and Disclosure

The use of role play

There is no right or

wrong: is

there a way to slowly disclose or tell all at once?

Role reversal. What would they want to know?

Have them write a personal ad (not to publish)

What’s the worst thing that can happen?

If in a partnership

o

ften times not about the cancer

a

ssess what relationship was like prior to diagnosisassess both patient and partner(s) expectations and understanding of disease, treatment, effects of treatment, etc.

© Bolte, S., 2013. Slide64

Working with Diverse Populations

The importance of open and neutral languageAsking to be educatedKeeping up with the literatureConnect with community leaders to help educateIdentify religious leaders who would be willing to educate and/or be referral possibilities

© Bolte, S., 2013.