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Sexuality Resources for Oncology Nurses Veronika Kolder, MD veronika-‐[email protected], Erin Sullivan Wagner [email protected]
Menopause and Sexual Health Clinic, appointments at (319) 356-‐2294 Gyn clinic RN (319) 356-‐2294, ext 3 (ask for Julie Youngblut, RN)
November 2015
Slides, handout, NCCN Guidelines for Female Sexual Dysfunction, Brief Sexual Symptom Checklist, Sexuality Resources for Women & Girls, and some articles (Denlinger et al. Survivorship: Sexual Dysfunction (Female), Version 1.2013. JNCCN 2014;12:184-‐92) available at www.aftercancer.co SANXDE-‐1, NCCN-‐endorsed anxiety & depression assessment tool, 2015 update in development http://cache1.medsci.cn/webeditor/uploadfile/201503/20150325140423575.pdf NCCN Distress management guidelines, Holland et al. JNCCN 2010;8:448-‐85 http://www.nccn.org/professionals/physician_gls/f_guidelines.asp FSFI (Female Sexual Function Index) http://www.fsfiquestionnaire.com/ Websites and Literature (alphabetical) Goetsch MF et al. A practical solution for dyspareunia in breast cancer survivors: a RCT. J Clin Oncol 2015;33(30):3394-‐3400 Graham C, Everything nobody tells you about cancer treatment and your sex life: from A to Z. http://kanwa.org/sexual-‐health/a-‐z-‐guide Hordern A, Intimacy and sexuality after cancer: a critical review of the literature. Cancer Nurs 2008;31(2):E9-‐17 Institute for Sexual Medicine, Irwin Goldstein, MD, President and Director, provides training for professionals in basic science research and clinical care www.theinstituteforsexualmedicine.com International Society for the Study of Women’s Sexual Health offers a special interest group and provider trainings focused on female sexual health and cancer www.isswsh.org Kaplan & Pacelli, The sexuality discussion: tools for the oncology nurse. Clin J Oncol Nurs 2011;15(1):15-‐17, also available to subscribers at the Oncology Nursing Society website (see below) Katz A, Breaking the silence on cancer and sexuality: a handbook for healthcare providers, published by Oncology Nursing Society, 1st ed. 2007 Katz A, Woman, Cancer, Sex. A book by Canadian doctor of nursing who has dedicated her career to education, Pittsburgh, PA: Hygeia Media, 2009 Kayser & Scott, Helping couples cope with women’s cancer: an evidence-‐based approach for practitioners, written by a social worker and psychologist, 1st ed. 2008 Lindau ST et al, A manifesto on the preservation of sexual function in women and girls with cancer. AJOG 2015;213(2):166-‐174. DOI: 10.1016/j.ajog.2015.03.039 www.sciencedirect.com/science/article/pii/S0002937815003208
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National Cancer Institute Physician Data Query (PDQ), Sexuality & Reproductive Issues, Treatment of sexual problems in people with cancer www.cancer.gov/about-‐cancer/treatment/side-‐effects/sexuality-‐fertility-‐women/sexuality-‐hp-‐pdq#section/_69 Oncology Nursing Society website has an educator resource center where subscribers can access a demonstration of a sexuality interview, articles about sexuality and reproductive issues, case scenarios, and a PowerPoint presentation http://erc.ons.org/resources?search_api_views_fulltext=sexuality Shapira & Dizon, Sex after cancer: the unaddressed issue. Medscape, Aug 24, 2015. Interview with an oncologist and sexual health specialist, addresses assumptions related to aging, gender identity. http://www.medscape.com/viewarticle/849944 Schover LR, Sexuality and Fertility After Cancer, Hematology 2005;523-‐7 http://asheducationbook.hematologylibrary.org/content/2005/1/523.full.pdf+html Scientific Network on Female Sexual Health and Cancer offers membership to professionals with interest in evidence-‐based approaches to the prevention and management of female sexual problems www.cancersexnetwork.org Society for Sex Therapy and Research offers member benefits including access to resources in the field and continuing education credits at SSTAR meeting www.sstarnet.org University of Chicago’s Program in Integrative Sexual Medicine (PRISM), Stacy Tessler Lindau, MD, MAPP, Director, offers on-‐site consultation, education, and clinical site visits for professionals who seek to create a regional clinical and research program, including multisite research registry www.uchospital.edu/specialties/obgyn/prism.html, (contact [email protected]) Talking to clients about sex: Validate and normalize the experience of sexual problems
o “Most survivors who have been through this kind of treatment find themselves facing changes in sexual function.”
o o “Can you tell me about the impact that cancer has had on sexuality or intimacy for you?” o o “Sometimes talking can help. Is there anything else about your sexual health that has been
bothering you?” -‐Adapted from Bober & Vareia. J Clin Onc 2012;30:3712-‐9
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PLISSIT model P ermission
o Invites patient to enter into a discussion about sexual health o “I’d like to review how you are doing as it relates to both sexuality and intimacy. Would that be
okay?” o “Are you (and your partner) having problems being intimate?”
L imited I nformation o Normalizes that issues related to sexual health are common o “Some women complain that sex and intimacy are different now. In fact, it is pretty common.
How has your experience been?” o “A common complaint is pain during intercourse. Is this something that is happening with you?”
S pecific S uggestions o Offer advice that can be actionable and easy to incorporate if possible o “If you have some trouble with vaginal dryness, it may help to use a lubricant before and during
sex.” I ntensive T herapy
o If one is not comfortable with issues brought up or does not know what to advise, offer expert consultation locally (if possible) or refer to educational resources.
o “It sounds like you might benefit from seeing an expert in sexual health. Can I suggest a referral?”
-‐Hordren, 2008, based on Annon JS. Behavioral treatment of sexual problems: brief therapy. NY, NY: Harper & Row, 1976;45. 5 A’s model
• Ask ‘How has treatment affected your sex life?’
• Advise ‘Many patients with cancer struggle with sexual problems.’
• Assess Eg Brief Sexual Symptom Checklist
• Assist Offer brief counsekling, counseling referral, internet resources
• Arrange follow-‐up Inquire at subsequent visits -‐Park et al. Cancer J 2009;15(1):74-‐77
BETTER model o B ring up the topic. o E xplain you are concerned with quality-‐of-‐life issues, including sexuality. Although you may not
be able to answer all questions, you want to convey that patients can talk about any concerns they have
o T ell patients that you will find appropriate resources to address their concerns. o T iming might not seem appropriate now, but acknowledge that they can ask for information at
any time. o E ducate patients about the side effects of their cancer treatments. o R ecord your assessment and interventions in patients’ medical record.
-‐Hordren, Cancer Nurs 2008;31(2):E9-‐E17 -‐Mick et al. Clin J Onc Nurs 2004;8(1):84-‐86
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Carter et al. J Sex Med 2011;8:549-‐59
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who present with vulvodynia symptoms even inthe absence of skin or mucosal changes. Thisrecommendation has been debated in the litera-ture.65 However, biopsy of a specific skin findingis often best to avoid false positives, and evalua-tion by a trained dermatopathologist isessential.25,66,67
Evaluation of Psychosocial Effects
Vulvodynia often significantly affects a woman’spsychological health. Reports of psychosocialstress are common in the literature and includedepression, altered body image, impaired socialrelationships, altered sexual function, and difficultyin physical activities and daily activities of life. Anoverall decrease in quality of life is seen in womenwith vulvodynia.8,68
As with other areas, conflicting studies existregarding the psychosocial effect of vulvardiscomfort. The only consistent psychologicaleffect in women with vulvodynia was difficultywith sexual functioning. Although studies findthat affected women’s physiologic sexual arousalis not impaired, because of fear of sexual inti-macy from previous experiences with pain withintercourse, patients become fearful and thussexual arousal is decreased. It is often necessaryto perform a psychosexual assessment or tosend patient and partner to be properlyevaluated.69,70
Treatment
The management of vulvodynia includes nonspe-cific supportive measures (Box 2) as well asspecific therapies directed toward the treatmentof neuropathic pain, pelvic floor muscle dysfunc-tion, and the psychosexual factors and sequelae(Box 3).
Education
Patients who have vulvodynia often enduremultiple therapeutic modalities. First, it is essentialto properly diagnose and identify the pain patternof vulvodynia. It is important to fully educate thepatient and the partner and to fully explain boththe condition and treatment options. Always intro-duce the concept early in the treatment processand warn that initial treatment is a trial oftherapy.53,57,71e74 Validation of the patient’ssymptoms is invaluable in treatment. Many womenare convinced that their symptoms result froma yeast infection or are fearful that their symptomssignify a serious underlying medical illness orfuture infertility. Patients need reassuranceregarding these concerns and that their symptomsare not caused by a sexually transmitted or life-
threatening disease. The self-managementprogram that the Robert Wood Johnson MedicalSchool-University of Medicine and Dentistry ofNew Jersey used during a vulvodynia clinical trialintroduces empowerment through individual self-management. It consists of 3 components,including a psychoeducation component thatinvolves understanding of exacerbating and allevi-ating factors, mental preparation and generalizedawareness of their condition, and the ability tocontrol factors affecting the condition. Learningto manage factors was empowering to patients.The second component involved physicallytraining the pelvic floor through understandingthe physiology of pelvic pain and learning exer-cises to decrease the painful sensations. The thirdcomponent of self-management is sexual prepara-tion of both patient and partner, which consists oflearning other forms of sexual pleasure. The studyfound these techniques to be highly effectivebecause the woman empowers herself throughtaking control of the condition and her responseto the condition.8
There are almost no scientific data on the effi-cacy of therapies for vulvodynia. Clinical trials areprimarily limited to small, open series of patients,and placebo-controlled studies are too small toyield useful data. However, because vulvodynia
Box 2Nonspecific activities for managing vulvodynia
Validate symptoms, be supportive
Treat any objective abnormalities
Topical estrogens (estradiol vaginal cream [Es-trace] can be used intravaginally or topically)(conjugated equine estrogen [Premarin])
Discontinue irritants (eg, excessive washing, irri-tating lubricants, tight clothing, douching,nonessential medications, sanitary pads, hairdryers)
Apply lubrication during sexual activity (eg,vegetable oil, Astroglide)
Apply lylocaine 2% jelly or 5% ointment forpain 20 minutes before sexual activity
Apply cold compresses (eg, crushed ice, frozenpeas, gel pack)
Address and manage depression
Offer education (including written material) forboth patient and partner
Refer patient for membership in National Vul-vodynia Association
Refer both patient and partner for sex therapyand counseling to help cope with symptoms
Vulvodynia 685
has gained recognition as a common and treatableentity, more studies are ongoing. A broad range ofpossible management strategies exists, but thetrial and error approach is necessary to find themost effective treatment of a patient. The concernis that few of the treatment strategies have beenconfirmed in randomized controlled trials.75e77
However, therapies should not be disregardedbecause of lack of randomized controlled clinicaltrials, because this is a complicated and difficult-to-treat condition.
Vulvar Care and Topical Preparations
A variety of general nonspecific measures areavailable to increase the comfort level of womenwith vulvodynia (see Box 2). All potential irritantsshould be eliminated, including the frequent appli-cation of medications, particularly creams thatcontain alcohols and other irritating substances.Excessive washing of the vulvar region by patientsis common, and many commercial lubricants (eg,K-Y lubricating jelly [Ortho McNeil, Raritan, NJ,USA]) may cause irritation. Astroglide (BioFilm,Vista, CA, USA) and vegetable oil are good alterna-tives. Xylocaine (AstraZeneca, Wilmington, DE,USA) 2% jelly (does not burn on application) and5% ointment (brief burning sensation on applica-tion but is more potent) can help relieve the symp-toms of burning in many women and, whenapplied liberally 20 minutes before sexual activity,may facilitate intercourse. Zolnoun andcolleagues79 trialed 5% lidocaine ointment in 61patients with vulvodynia, and a significant increasein patients’ ability to have intercourse was noted(76% of women reported ability to have inter-course, compared with 36% beforetreatment).78e81 In this study, patients appliedthe ointment on the cotton ball and placed it inthe vestibule overnight. Patients continued toapply the preparation for 7 weeks, althoughsome applied it for a longer period of time. Dan-ielsson and colleagues66 compared applicationof topical lidocaine gel with biofeedback in 46women and found improved sexual function inboth groups at 12 months. Lidocaine applicationdoes have side effects, so it is important to instructpatients that transient penile numbness may occurfor sexual partners and that a remote chance oflidocaine toxicity exists.57 A condom maydecrease such side effects. Application of topicalanesthetics may result in significant increase inthe degree of comfort during intercourse.72,78
The application of cold compresses or ice to thevulva may help relieve symptoms. Rinsing andpatting dry the vulva after urination may be helpful.Use of hair dryers should be discouraged. Benzo-caine is the anesthetic in Vagicaine (Clay-ParkLaboratories Inc, Bronx, NY, USA) and Vagisil(Combe Inc, White Plains, NY, USA), but this maycause allergic contact dermatitis and should beavoided. Diphenhydramine (Benadryl; WarnerWellcome, Morris Plains, NJ, USA), present inmany topical anesthetics and anti-itch prepara-tions, is also is a common sensitizer that shouldbe avoided.54
The topical immune response modifier imiqui-mod (Aldara, 3M Pharmaceuticals) has been sug-gested as a potential therapy because of its
Box 3Standard therapy for vulvodynia
Treat abnormal visible conditions such as infec-tions, dermatoses, and both malignant andpremalignant conditions
Vulvar care measures; avoidance of irritants
Topical medications
Lidocaine 5% jelly at introitus at bedtime
Nitroglycerine
Amitriptyline 2%, baclofen 2%(!ketofen 2%)
Capsaicin
Oral medications:
Antidepressant class
Tricyclic medications ("150 mg/d)
Venlafaxine extended release (150 mg/d)
Duloxetine (60 mg twice a day)
Anticonvulsant class
Gabapentin ("3600 mg/d)
Pregabalin ("300 twice a day)
Injections
Triamcinolone 10 mg/mL, 0.2e0.4 mL intotrigger point
Botulinum toxin A injections
Intralesional interferon (IFN)-a (no longerused)
Pelvic floor physical therapy
Pelvic floor surface electromyography andbiofeedback
Low-oxalate diet with calcium citrate supple-mentation (controversial)
Cognitive-behavioral therapy (CBT), sexualcounseling
Surgery (for vestibulodynia only) localized exci-sion/vestibulectomy/perineoplasty
Groysman686
VULVODYNIA
Groysman. Dermatol Clin 2010;28:681-‐96 (Note: these guidelines are not cancer-‐specific).
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COLOSTOMY: The 4 ‘P’s
DeSimone et al. AJCO 2014;37(1):101-‐6
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Kaplan & Pacelli, The sexuality discussion: tools for the oncology nurse. Clin J Oncol Nurs 2011;15(1):15-‐7. Also available to subscribers via the Oncology Nursing Society website (above).