Improving Care for GLBTQ Communities Warren J Ferguson

Improving Care for GLBTQ Communities Warren J. Ferguson, MD Associate Professor and Vice Chair Department of Family Medicine and Community Health Grand Rounds September 22, 2009

Consider these patient experiences • • • A father bringing his child to the pediatric emergency room is asked: “Name of son’s mother? ” Father: “He doesn’t have a mother; he has two fathers. ” Registration clerk: “Well, he HAS TO have a mother. ” – The father is a physician faculty member in pediatrics 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 2

Experiences • • A man calls the emergency room after hearing that his partner was transported by ambulance following a motor vehicle collision. The ED refuses to disclose his condition, only confirming that he is at the hospital. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 3

Experiences • • • An FTM transgendered adult comes to the ED to be evaluated for chest pain. There is a lot of confusion when he can’t be found in the registration system and discloses that he is now living as a man and previously was a woman. Several hours later, after showing the bracelet to numerous doctors, nurses, technicians and transport personnel, he notes that his ID bracelet states that his gender is female. – He is employed at the medical school and has not disclosed his status A young FTM who still appears androgynous feels incredibly anxious while visiting the hospital because he doesn’t know if there any single-use bathrooms available. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 4

Experiences • • I have had two co-workers who have lost adolescent/young adult children (G and L) to suicide by gunshots. A third seriously contemplated suicide but fortunately got help that was needed. A young girl has always insisted on playing with boys, toys that are traditionally labeled boys’ toys, and refuses to touch dolls. She dresses in male clothing whenever possible, and has repeatedly expressed the conviction that she is a boy. The doctor tells her parents that it is a phase that she’ll grow out of. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 5

UMass Memorial GLBTQ Quality Committee: Background • • Emanated from effort by Greater Worcester Community Foundation: GLBT Partnership Initiative Task Force co-chaired by former President/CEO Peter Levine, MD as well as faculty member Emily Ferrara and Rodney Glasgow from Worcester Academy How can we improve life in Worcester for the GLBT community? Surveyed key constituents in Worcester: health care identified as a high priority need – Nearly half of respondents leave Worcester for their health care 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 6

Goal of the initiative • UMass Memorial seeks to be the health care provider of choice for all people living in Central Massachusetts. The ad hoc committee, in accordance with UMass Memorial’s quality standards, will endeavor to improve the patient experience and quality of care for the Gay, Lesbian, Bisexual and Transgender (GLBT) population. 1 1 This term is inclusive of all patient issues and concerns regarding sexual orientation and gender identity. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 7

Two overarching objectives 1. Improve the quality of care for the GLBTQ communities by: – Improving the patient’s/family’s experience – Developing best practice guidelines to decrease care variation and health disparities 2. 10/24/2020 Improve the environment and systems of care (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 8

Needs assessment § § Two meetings with GLBTQ Quality Improvement Task Force One meeting with GLBTQ community members and allies Questions were asked to solicit perspectives from both providers and patients Another excellent resource: DPH LGBT disparities report 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 9

Key findings § § § Non-clinical staff need training on working with GLBT patients. Provider and staff knowledge and comfort levels are not consistent throughout the hospital system. Issues present in customer service throughout the system may disproportionately affect GLBT patients. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 10

Key findings § § Providers’ knowledge and attitude towards GLBT issues are often difficult to ascertain, which can make it challenging for patients to come out to providers. Protocols and standards of care for transgender patients would greatly improve care for this population. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 11

Key findings § § Patients need a coordinated system for identifying GLBT-culturally competent providers. The computer system and forms that track patient information do not adequately reflect the lives of many GLBT patients. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 12

The population • • • Kinsey estimated 10% of the population is a member of a GLBT community Due to fear of disclosure, accurate statistics are probably not possible 2000 Census – Same gender couples live in 99. 3% of all US counties – Same gender couples raising children in 96% of all US counties Higher percentages in urban areas Cross race, ethnicity, SES and education levels 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 13

Paucity of literature and research • • Between 1980 -99, 0. 1% of all published manuscripts on GLBT concerns Between 1979 -92, only a half million dollars of designated NIH research funding 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 14

GLBT persons identified as underserved by Healthy People 2010 • • • GLBT persons are reluctant to seek health care due to anticipated discrimination Physicians often don’t ask about sexual orientation or gender identity In a survey of GLBT persons, 98% felt sexual orientation is important to health but 64% withhold information for fear of substandard care 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 15

Being GLBT does not –in and of itself-mean you are ‘at risk’ • • GLBT people live in a risky environment which in turn puts them 'at risk' for higher rates of disease and/or injury. Being GLBT is not hazardous to one’s health but homophobia increases risk factors associated with health problems. Therefore, homophobia is a major health hazard to GLBT people and society. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 16

Specific content • • • Environment of care Sexual and gender history taking Adolescents and families Adults Transgender adults 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 17

Care environment 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 18

Environment of care • Waiting Room – – – • • Rainbow sticker; pink triangle Wear a rainbow pin Posters and brochures Recognize LGBT Pride Day Post non-discrimination policy Single sex bathrooms Change forms/questionnaires to be more inclusive – Gender, Family Status • Staff training and personnel policies – Zero tolerance for discrimination 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 19

10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 20

Sexual History Taking • Documented high degree of homophobia and physician discomfort with sexual history taking – Avoidance is common; need to work at gaining comfort with difference • GLBT individuals have a high degree of suspicion and fear about mistreatment and will often not disclose sexual orientation or gender differences 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 21

Not just asking questions It’s also about gaining comfort with difference 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 22

Recommended questions 1. 2. 3. 4. 5. 10/24/2020 Incorporate into every new patient visit and annual health maintenance visit Start with a statement about sexual history taking as important Are you sexually active? Do you have sex with men, women or both? Are you attracted sexually to men, women or both? (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 23

GLBT Youth 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 24

GLBT adolescents are more likely to… § § § Feel isolated Use cocaine, alcohol, tobacco, and other substances Contract an STD Experience dating violence Get pregnant or get someone pregnant 10/24/2020 § § § Be threatened or injured with a weapon at school Be kicked out of their home Attempt suicide (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 25

Risk factors for GLBTQ youth directly correlate to safety and support in their environment. Increased safety and support leads to better health outcomes. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 26

Best practices for supporting GLBT youth § Support positive development and expression of sexual orientation and gender identity § Reject “solutions” or approaches that pathologize or further stigmatize GLBT identity and expression §Create safe space and invite disclosure § Use gender-neutral language and open-ended questions 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 27

Best practices (continued) § Manage confidential information appropriately re: families, insurance, and office staff § Assess risk and attend to mental health needs and safety concerns re: self-injury, family rejection, school environment § Provide appropriate medical and sexual health information and resources 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 28

Best practices (continued) § Provide affirming, non-judgmental counseling § Bridge connections to culturally competent mental health care providers, endocrinologists, or other specialists as needed § Bridge connections to other GLBT youth and adult mentors 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 29

Supporting Families 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 30

The impact of family rejection was measured for: Substance use/abuse: Mental health: § § § Suicide attempts Suicidal ideation Depression § § § Heavy drinking Illicit substance use Substance-related problems Sexual risk behavior: § § § Unprotected sex with a casual partner (last experience) Unprotected sex with a casual partner (last 6 months) STD diagnosis 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 31

Findings: Increased experience of family rejection directly correlates to negative health outcomes. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys (c) 5/2008 The GLBT Youth Support Project- www. hcsm. org/glys 32

Best Practices §Ask adolescents about family reactions and refer to community support and counseling as needed §Identify community and on-line resources so parents can connect with positive parental role models to decrease rejection and increase support §Advise parents that negative reactions adversely influence their child’s health and mental health 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 33

Best practices (continued) § § Recommend that parents and caregivers modify highly rejecting behaviors that have the most influence on health concerns, such as suicidality Expand anticipatory guidance to include information on the need for support and the link between family rejection and negative health outcomes 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 34

Health disparities and solutions: Adult patients 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 35

10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 36

Health risks for MSM • • Stress of homophobia Hate crimes Avoidance of health care Lack of health insurance Higher rates of smoking, substance abuse Intimate partner violence Depression, PTSD Viral and bacterial infections 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 37

Screening recommendations • • • Screen for symptoms of STDs: urethral d/c, dysuria, ulcers, warts, adenopathy, rectal pain, bleeding or d/c Smoking and drug use history Depression screen Violence screen Stratify as high or low risk behaviors Immunize all against HAV and HBV 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 38

Recommendations for MSM • Take a sexual behavior history – Number of partners; casual sex; monogamous relationship – Drug use with sex – Oral, anal receptive, condom use • • History of HIV testing and status Above will identify as high or low risk 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 39

Screening recommendations • High risk=3 -6 months; low risk=annual – HIV serology; Syphilis serology – Urethral or urine GC and Chlamydia – High risk: pharyngeal GC – Receptive intercourse: rectal GC, Chlamydia • HIV + or High risk=annually; low risk=q 23 years – Anal PAP smear 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 40

Anal Pap smear • • For 24 hours prior, no receptive intercourse, use of lubricants, creams or use of sex toys Use dacron swab to swab also surfaces of anus and rectum Send for PAP and HPV testing Fenway has a culposcopy clinic 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 41

Other routine care • • • Diet, exercise Hypertension Diabetes Lipids Colon Cancer Screening BPH 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 42

Recommendations for WSW • Health Risks – Homophobia and associated stress – Avoidance of medical care – Lack health insurance – Higher risk of overweight – Higher prevalence of tobacco use and substance use – Lower rates of pregnancy 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 43

Screening recommendations • • • Sexual behaviors history Smoking and drug use history Depression screen Violence screen Intimate partner violence Desire for children and fertility referral 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 44

Screening recommendations • • • PAP, STDs (don’t assume not at risk) Mammography Conditions associated with obesity – Diabetes – HTN, Heart disease • • Colon cancer screening Diet, exercise 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 45

Considerations for the transgendered patient 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 46

Terminology • • • Transsexual- A person who believes that they are the opposite gender to which they were born into genetically. Transgendered- A person who does not feel as though they completely fall into the gender that they were born into. This is usually viewed as an umbrella term that would include crossdressers and transsexuals. Crossdresser (old term transvestite) – A person who enjoys wearing clothes of the opposite gender. They may or may not have gender identity issues. Gender Orientation – Whether you identify as male or female. This is not the same as sexual identity. Sexual Orientation – Who you are sexually attracted to – women, men or both MTF –Male to Female transsexual (sometimes referred to as a transwoman) FTM – Female to Male transsexual (sometimes referred to as a transman) RLE (Real Life Experience) Living fulltime in the new gender. Required prior to having sexual reassignment surgery. FFS - Facial Feminization Surgery - A type of plastic surgery that modifies the soft tissue and bony structure of the face to make it appear more feminine. Changes can be distinctive but are also subtle. Sexual Reassignment Surgery (SRS) / alternatively Genital Reassignment Surgery (GRS)- Genital surgery (vaginoplasty for MTF/ phalloplasty for FTM) GID (Gender Identity Disorder aka Gender Dysphoria – The psychiatric diagnosis given transsexuals vis a vis their discomfort with their biological gender. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 47

Trans-specific Areas of Focus 1. There is often a higher level of discomfort and suspicion of the medical community amongst transgender persons. The highest priority should be given to creating a trusting relationship. a. Begin with open-ended questions of how content s/he is with life today. b. Ask directly if s/he has any short term needs (make sure the patient knows you mean all needs and not just medical needs) Safe housing? Financial crisis? c. Long term needs 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 48

History Trans-Specific § What is your current support system with family and friends? § Are you or have you ever taken hormones. Were they prescribed by a doctor? § Have you had or contemplated any ‘body modifications’ from hair removal to various trans-related procedures. 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 49

Discussion of Plan With Patient 1. Discuss non-gender related diagnoses with patient and their treatment with the patient i. e. hypertension, need for colonoscopy. • 2. Gender related issues would potentially be: a. Need for mammogram in MTF and FTM (if no mastectomy, still need annual chest exam as some breast tissue retained for shaping) b. PAP smear still likely indicated for FTM c. Hepatitis B immunization if IV drug use or not monogamous d. Continued need for prostate monitoring in MTF e. Long term goals regarding having children prior to start of hormones f. Discuss effects of hormones on fertility g. Need for the FTM to monitor more closely for ovarian cancer if on testosterone and had not had an oophorectomy • 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 50

Hormones Current effort to train primary care physicians to initiate hormonal treatment Paper will be distributed via email 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 51

Effects of Hormone Regimen FTM a. Increased muscle mass and tone b. Increased libido c. Increase in facial and general body hair d. Male-pattern baldness (If genetically inclined) e. Deepening of voice f. May have sense of finally feeling normal/calmer g. Clitoral enlargement to up to 4 -5 cm. (1 -3 years) h. Decrease or cessation of menses i. Change in body odor • Voice deepening and facial hair development is permanent • At some point infertility will likely become permanent 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 52

Effects of Hormones FTM – Potential Negative Side Effects • a. May have more volatile nature (rather than calmer) b. Increased risk ovarian cancer c. Increase in red blood cell (polycythemia) count can in rare cases lead to stroke d. Worsening of lipid profile to that of typical male e. Hypertension f. Unhealthy male pattern fat distribution if you don’t watch diet and exercise Hepatitis – especially with oral testosterone 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 53

Effects of Hormones MTF a. Breast development b. Fat redistribution to hips/buttocks c. Decrease in muscle mass d. Decreased libido e. Decrease in testicular mass f. Erections usually less firm or absent g. Halting of further scalp hair loss h. Slow decrease in body hair except on face i. Often a significant calming effect j. Sometimes more emotionally sensitive k. Change in body odor l. Softening of skin m. Improved cholesterol profile • Erectile and Fertility issues often permanent after 6 -12 months • Any breast development is irreversible 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 54

Effects of Hormones MTF- Negative Side Effects a. Thrombophlebitis and Pulmonary Embolism (esp. if cigarette smoker and/or over 40) b. Elevated potassium with spironolactone c. Hepatitis d. Elevated prolactin and prolactinomas (rare) e. ? Effect on risk of MI f. Increased risk of breast cancer g. Increased risk for hypertension (spironolactone lowers this risk) 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 55

Discussion with Patient 4. Labs a. Lipid profile b. Liver function tests c. Complete blood count - Polycythemia – (high RBC) in the FTM d. Basic Metabolic Panel – To check for high potassium from spironolactone in MTF e. Testosterone/ free testosterone level f. Estradiol level – MTF g. Prolactin level – MTF 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 56

The good news 10/24/2020 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys 57

New resolution by AMA • 10/24/2020 “… AMA supports public and private health insurance coverage for treatment of gender identity disorder as recommended by the patient’s physician. ” - June 2008 58 (c) 4/2009 The GLBT Youth Support Project- www. hcsm. org/glys

References and Resources • Gay and Lesbian Medical Association’s Guide for Care of the LGBT persons http: //www. glma. org/_data/n_0001/resources/live/Welcoming%20 Environment. pdf • Center for Population Research in LGBT Health http: //www. icpsr. umich. edu/fenway/ Makadon HJ. Improving health care for the lesbian and gay communities. NEJM. 2006 Mar 2; 354(9): 895 -7. e sex witen. • Makadon HJ, Mayer KH, Garofalo R. Optimizing primary care for men who have sex with men. JAMA. 2006 Nov 15; 296(19): 2362 -5 • AETC Anal PAP video guide http: //www. aidsetc. org/aidsetc? page=etresdisplay&resource=etres-229 • 2005 Youth Behavior Risk Survey http: //www. doe. mass. edu/cnp/hprograms/yrbs/05/ • C Ryan, D Huebner, RM Diaz, J Sanchez. Family rejection as a predictor of negative health outcomes in white and latino lesbian, gay, and bisexual young adults. Peds 2009, 123 (1): 346 -52. • MA DPH Survey Report: The Health of LGBT Persons in Massachusetts. July, 2009 • http: //www. mass. gov/Eeohhs 2/docs/dph/commissioner/lgbt_health_report. pdf