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The Classification of Sexual Disorders and Sexual Health: Recommendations for ICD-11 Geoffrey M. Reed Ph.D and Eszter Kismödi JD. LLM 23 rd WPATH Symposium.

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Presentation on theme: "The Classification of Sexual Disorders and Sexual Health: Recommendations for ICD-11 Geoffrey M. Reed Ph.D and Eszter Kismödi JD. LLM 23 rd WPATH Symposium."— Presentation transcript:

1 The Classification of Sexual Disorders and Sexual Health: Recommendations for ICD-11 Geoffrey M. Reed Ph.D and Eszter Kismödi JD. LLM 23 rd WPATH Symposium Bangkok, Thailand 16 February 2014

2 Bangkok, Thailand | 16 February | World Health Organization Health classifications are core constitutional responsibility of WHO, ratified by treaty with 194 member countries

3 Bangkok, Thailand | 16 February | Purposes of ICD By international treaty, 194 WHO Member States agree to use ICD as standard for collection and reporting of health informationWhy? To monitor epidemics/threats to public health/disease burden To identify vulnerable/at risk populations To define obligations of WHO Member States to provide free or subsidized health care to their populations To facilitate access to appropriate health care services As a basis for guidelines for care and standards of practice To facilitate research into more effective treatments

4 Bangkok, Thailand | 16 February | ICD-10 Revision World Health Assembly Mandated by World Health Assembly (Health Ministers of all WHO Member Countries) ICD-10 completed in 1990 ICD-10 completed in 1990; longest time without revision in history of ICD all areas Covers all areas of diseases, disorders, and injuries, and health conditions; diagnostic standard for medicine and health systems Proposal development to be completed 2014; field testing 2014 – WHA approval expected 2017

5 Bangkok, Thailand | 16 February | ICD Revision Orienting Principles help WHO member countries reduce disease burden Highest goal is to help WHO member countries reduce disease burden clinical utility: Focus on clinical utility: facilitate identification and treatment options Multidisciplinary, global, multilingual Multidisciplinary, global, multilingual development collaboration Must be undertaken in collaboration with stakeholders independence from pharmaceutical and other commercial influence Integrity of system depends on independence from pharmaceutical and other commercial influence

6 Bangkok, Thailand | 16 February | Mental and Behavioural Disorders International Advisory Group Steven E. Hyman (US), Chair Jose Luis Ayuso-Mateos (Spain) Wolfgang Gaebel (Germany) Oye Gureje (Nigeria) Assen Jablensky (Australia) Brigitte Khoury (Lebanon) Anne Lovell (France) Maria Elena Medina-Mora (Mexico) Afarin Rahimi (Iran) Pratap Sharan (India) Pichet Udomratn (Thailand) Xiao Zeping (China)

7 Bangkok, Thailand | 16 February | WHO Objective to Advance Public Good ICD-11 will be a free and open resource for global community Tool for practitioners, researchers, consumers, administrators, and policy makers, governments Will be available on internet Versions will be available at low cost, with large discounts to low income countries

8 Bangkok, Thailand | 16 February | ICD DSM Produced by global health agency of UN Produced by single national professional association Free and open resource to advance public good Provides large proportion of APA revenue For: 1) countries; and 2) front- line service providers For psychiatrists Global, multidisciplinary, multilingual development Dominated by US, Anglophone perspective Approved by World Health Assembly Approved by APA Board of Trustees Covers all health conditions Covers only mental disorders

9 Bangkok, Thailand | 16 February | Classification System Used by Global Psychiatrists (4887 psychiatrists in 44 countries) Reed et al, World Psychiatry 2011;10:

10 Classification Most Used by Country AFRO AMRO EMRO EURO SEARO WPRO

11 Bangkok, Thailand | 16 February | MSD and RHR WHO Department of Mental Health and Substance Abuse Department (MSD) Mental and Behavioural Disorders WHO Department of Mental Health and Substance Abuse Department (MSD) responsible for revision of ICD-10 Mental and Behavioural Disorders Department of Reproductive Health and Research (RHR) Has collaborated with Department of Reproductive Health and Research (RHR) to develop recommendations for revision of ICD-10 categories related to sexual disorders, sexual functioning, and gender identity currently in Mental and Behavioural Disorders Related to RHR’s broader perspective on sexual health and human rights Working Group on Sexual Disorders and Sexual Health jointly appointed by both Departments To report jointly to ICD-11 Advisory Groups for Mental Health and Genito-urinary and Reproductive Medicine

12 Revision Steering Group World Health Assembly Mental Health Advisory Group (Chapters F, Z) Sexual Disorders and Sexual Health Working Group G-U & Rep Med Advisory Group (Chapter N) Internal Medicine Advisory Group (Chapter E) Endocrinology Working Group... Chapters designated above refer to ICD-10 chapters that may be especially relevant, which is not to say that other chapters are not also relevant. The chapter designations above relate to primary but not exclusive areas of responsibility for the different Advisory Groups. These are not the only responsibilities of these groups, and other Advisory Groups are also involved in developing recommendations in these areas. ICD Revision Political Structure for Sexual Disorders and Sexual Health

13 Bangkok, Thailand | 16 February | Working Group on Sexual Disorders and Sexual Health Elham Atalla (Bahrain) Rosemary Coates (Australia) Susan Cochran (USA) Peggy Cohen-Kettenis (Netherlands) Jane Cottingham, Chair (Switzerland) Jack Drescher (USA) Sudhakar Krishnamurti (India) Richard Krueger (USA) Adele Marais (South Africa) Elisabeth Meloni Vieira (Brazil) Sam Winter (PR China)

14 Bangkok, Thailand | 16 February | Scope of Working Group Responsibility: Current ICD-10 Categories F52: Male and female sexual dysfunctions not caused by organic disorder or disease F64: Gender identity disorders F65: Disorders of sexual preference (paraphilias) F66: Psychological and behavioural disorders associated with sexual development and orientation

15 Bangkok, Thailand | 16 February | Development of ICD-11 Proposals WGSDSH developed draft proposals and rationale documents WHO appointed Peer Review group of 11 global experts, reviewed all proposals Strong support from reviewers for major changes proposed; proposals revised in response to reviewer comments Field study protocol development meeting held April 2013 with a different set of global experts to develop plans for country-level field testing of proposals, including additional discussion of sexual dysfunctions proposals with additional global experts Solicitation of feedback from WPATH and WAS Group discussions with sexual health experts in Mexico and South Africa, particularly focusing on sexual dysfunctions

16 Bangkok, Thailand | 16 February | Tasks of Working Group 1.To review available scientific evidence, clinical and policy information on use, clinical utility, and experience within various health care settings throughout the world, including primary care and specialist settings 2.To review proposals for DSM-5 and consider how these may or may not be suited for global applications 3.To assemble and prepare specific proposals, including the placement and organization of relevant categories 4.To provide drafts of the content (e.g., definitions, descriptions, diagnostic guidelines)

17 Bangkok, Thailand | 16 February | Overview of ICD-11 Proposals

18 Bangkok, Thailand | 16 February | F64 – Gender Identity Disorders

19 Bangkok, Thailand | 16 February | First Question Should we have categories to represent transgender phenomena as a part of a classification of health conditions? To identify vulnerable/at risk populations To define obligations of WHO Member States to provide free or subsidized health care to their populations To facilitate access to appropriate health care services As a basis for guidelines for care and standards of practice To facilitate research into more effective treatments ✔ ✔ ✔ ✔ ✔

20 Bangkok, Thailand | 16 February | Second Question categories How should category or categories related to transgender phenomena be conceptualized? ICD-10 Definition: Transsexualism (ICD-10 F64.0) A desire to live and be accepted as a member of the opposite sex, usually accompanied by a sense of discomfort with, or inappropriateness of, one's anatomic sex and a wish to have hormonal treatment and surgery to make one's body as congruent as possible with the preferred sex.

21 Bangkok, Thailand | 16 February | ICD-10 Definition: Gender Identity Disorder of Childhood Disorders, usually first manifest during early childhood (and always well before puberty), characterized by a persistent and intense distress about assigned sex, together with a desire to be (or insistence that one is) of the other sex. There is a persistent preoccupation with the dress and/or activities of the opposite sex and/or repudiation of the patient's own sex. These disorders are thought to be relatively uncommon and should not be confused with the much more frequent nonconformity wit stereotypic sex-role behaviour… The diagnosis cannot be made when the individual has reached puberty.

22 Bangkok, Thailand | 16 February | F64: Issues Debated Diagnosis must help to identify individuals who need treatment, and support access to appropriate health care How to ensure non-pathologizing reclassification that: –Facilitates appropriate access to non-coerced health care –Helps to protect human rights –Is scientifically defensible and grounded in evidence, broadly defined –Will be acceptable to transgender people, health care professionals, researchers, and Member States

23 Bangkok, Thailand | 16 February | F64: Preliminary Working Group Recommendations 1.Gender incongruence should be moved out of mental and behavioural disorders chapter 1.Gender incongruence should be retained in ICD- 11, but should be moved out of mental and behavioural disorders chapter 2.Two categories proposed: –Gender Incongruence of Adolescence and Adulthood –Gender Incongruence of Childhood

24 Bangkok, Thailand | 16 February | Draft Definition - GIAA Gender Incongruence of Adolescence and Adulthood Gender Incongruence of Adolescence and Adulthood is characterized by a marked and persistent incongruence between an individual’s experienced gender and the assigned sex. The diagnosis cannot be assigned prior to the onset of puberty. Gender Incongruence of Adolescence and Adulthood often leads to a desire to ‘transition’, in order to live and be accepted as a person of the experienced gender. Establishing congruence may include hormonal treatment, surgery or other health care services to make the individual’s body align, as much as desired and to the extent possible, with the experienced gender.

25 Bangkok, Thailand | 16 February | Draft Diagnostic Guidelines – GIC I Gender Incongruence of Childhood Gender Incongruence of Childhood is characterized by a marked incongruence between an individual’s experienced/expressed gender and the assigned sex in pre-pubertal children, manifested by all of the following: –A strong desire on the child’s part to be a different gender than the assigned gender, or insistence that he or she is a different gender –A strong dislike of his or her sexual anatomy or anticipated secondary sex characteristics and/or a strong desire for the primary and/or secondary sex characteristics that match the experienced gender –Make-believe or fantasy play, toys, games, or activities and playmates that are typical of the experienced rather than their assigned sex –Must have persisted for about 2 years (i.e., cannot be assigned before 5) –Can only be assigned to children before puberty

26 Bangkok, Thailand | 16 February | Draft Diagnostic Guidelines – GIC II Relatively high threshold is intended to avoid inclusion of children who only show gender variant behaviors and interests, even when these children experience distress resulting from negative attitudes towards the gender variance. Gender variant behavior and preferences alone are not sufficient for making a diagnosis of Gender Incongruence of Childhood. May be associated with clinically significant distress or impairment in important areas of functioning, particularly in disapproving social environments, but neither distress nor functional impairment is required. There is wide variation in developmental trajectories. Many children showing gender variant behaviors feel no incongruence between their experienced gender and assigned sex, and most are not gender incongruent in adolescence or adulthood.

27 Bangkok, Thailand | 16 February | Third Question Where should categories related to transgender phenomena be placed in the classification? Mental and behavioural disorders? Separate chapter? Sexuality-related conditions and sexual health? Factors influencing health status and contact with health services? Endocrine disorders, genitourinary disorders or other ‘medical’ chapter?

28 Bangkok, Thailand | 16 February | Placement of Gender Incongruence Within ICD revision political structure, receptivity to chapter on Sexual Health Conditions, which would include Gender Incongruence Would also include Sexual Dysfunctions, to combine previously ‘organic’ and ‘nonorganic’ parts Other categories still under discussion, but focus would be narrow Name for chapter to be determined; e.g., Sexuality- Related Conditions and Dysfunctions Secretariat is currently developing proposal for structure and content of chapter for provisional approval by RSG

29 Bangkok, Thailand | 16 February | F65 – Disorders of Sexual Preference (Paraphilias)

30 Bangkok, Thailand | 16 February | ICD-10 (1990) Disorders of Sexual Preference Disorders of sexual preference –F65.0 Fetishism –F65.1 Fetishistic transvestism –F65.2 Exhibitionism –F65.3 Voyeurism –F65.4 Paedophilia –F65.5 Sadomasochism –F65.6 Multiple disorders of sexual preference –F65.8 Other disorders of sexual preference –F65.9 Disorder of sexual preference, unspecified

31 Bangkok, Thailand | 16 February | Working Group Recommendations I Rename section to Paraphilic Disorders Better represents content of section, which involves atypical sexual interests ‘Disorders’ added to clarify that atypical sexual interests have to be pathological, i.e., result in action against a non-consenting individual or cause severe distress or significant risk of injury or death

32 Bangkok, Thailand | 16 February | Working Group Recommendations II Delete diagnostic categories which consist of consensual or solitary sexual behaviour F 65.0 Fetishism F 65.1 Fetishistic Transvestism F 65.5 Sadomasochism Reasons: No public health importance No association with distress/functional impairment Inclusion results in stigmatization of these behaviours and individuals practicing them, no discernible health benefit

33 Bangkok, Thailand | 16 February | F66 - Psychological and Behavioural Disorders Associated with Sexual Development and Orientation

34 Bangkok, Thailand | 16 February | F66: Current ICD-10 Categories (1990) F66.0: Sexual maturation disorder F66.1: Ego-dystonic sexual orientation F66.2: Sexual relationship disorder F66.8: Other psychosexual development disorders F66.9: Psychosexual development disorder, unspecified –x0 Heterosexuality –x1 Homosexuality –x2 Bisexuality –x8 Other, including prepubertal –May also be assigned based on gender identity

35 Bangkok, Thailand | 16 February | F66: Rationale for Changes Sexual maturation disorder: Distress surrounding developing a different than normative sexual orientation or gender identity is in itself normative and part of a differentiation process Ego-dystonic homosexuality pathologizes a normal response to social stigmatization Sexual relationship disorder is not a primary diagnosis but a consequence of relationship difficulties—it is overly broad and might include any issue that might affect a sexual relationship Psychosexual development disorder: Lacks clinical utility, no scholarly research on the topic, now subsumed into other areas

36 Bangkok, Thailand | 16 February | F66: Working Group Recommendation Deletion of all F66 categories from ICD-11

37 Bangkok, Thailand | 16 February | Country-Based Field Testing: Sexual Disorders and Sexual Health Field studies to be conducted with WHO support in Mexico, South Africa, Lebanon (Arab region), Brazil, India Includes legal and policy analyses for recommendations for Gender Incongruence and Paraphilic Disorders Additional field studies in high-income countries will be funded by the governments of those countries (Netherlands, UK, Germany, Sweden)

38 Bangkok, Thailand | 16 February | Country-Based Field Testing: Participating Institutions National Institute of Psychiatry Ramón de la Fuente, Mexico University of Cape Town, South Africa American University of Beirut, Lebanon Federal University of Sao Paulo, Brazil All India Institute of Medical Sciences, India

39 Bangkok, Thailand | 16 February | Field Studies on Gender Incongruence in Low- and Middle-Income Countries Protocols under development, at country level to account for local policy, legal, social, cultural and health systems environment One major study, led by Mexico with other countries participating, will involve in-depth interviews with trans* people to examine their experiences throughout their lives with gender identity and health services, to examine questions including: –Are trans* people’s experiences, in their own words, consistent with proposed diagnostic guidelines for Gender Incongruence of Adolescence and Adulthood and of Childhood –What are trans* people’s experiences of the impact of diagnosis? Helpful? Harmful? The same in adulthood as in childhood?

40 Bangkok, Thailand | 16 February | Field Studies for Mental Health, Sexual Health, and Primary Care Professionals for internet-based field studies 1.Global Clinical Practice Network for internet-based field studies To sign up, send to: To sign up, send to: 2.Clinic-Based Field Studies implemented through International Field Study Centers

41 Bangkok, Thailand | 16 February | Global Clinical Practice Network Registry of global mental health and primary care professionals who have volunteered to participate in internet-based field studies for ICD-11 including through WPATH Specific outreach to sexual health professionals and experts in transgender care, including through WPATH Registrants provide information about training and professional background, practice activities and characteristics Online registration available in 9 languages: Arabic, Chinese, English, French, German, Japanese, Portuguese, Russian, and Spanish Participants are solicited to participate in studies no more than once per month, each requires no more than 30 minutes

42 Bangkok, Thailand | 16 February | 9,826 Current GCPN Registrants Globally 9,826 Current GCPN Registrants Globally (As of 1 February 2014) Americas North: 1,028 South & Central: 1,066 Europe 3,580 Africa 167 Eastern Mediterranean Mediterranean 298 SoutheastAsia 457 Western Pacific Asia: 2,926 Oceania: 258

43 Global GCPN Registrants: Disciplinary Representation

44 Global GPCN Registrants: Language of Registration

45 Bangkok, Thailand | 16 February | Countries with Greatest Number of GPCN Registrants RankCountryNPercentage 1 China Japan United States of America United Kingdom Russian Federation France Mexico India Germany Norway

46 Global GPCN Registrants: Areas of Expertise

47 Bangkok, Thailand | 16 February | Implementation: Internet-Based Field Studies via GCPN Participants are randomly sampled from GCPN registrants according to predetermined criteria based on study aims (e.g., must be currently seeing patients or supervising; child or adolescent experience) All studies implemented in multiple languages Solicit through , track solicitation/participation Studies use standardized diagnostic material (e.g., vignettes) in order to examine clinician decision making using proposed ICD- 11 guidelines (e.g., as compared to ICD-10) Comparison of experts (e.g., WPATH members) and non-experts to identify needs for training and practice improvement

48 Bangkok, Thailand | 16 February | Next Steps in Developing Categories, Descriptions and Guidelines Proposals will be posted on ICD-11 beta platform for public review and comment Comments will be reviewed, and modifications to proposals will be considered on that basis Proposals will be field tested in 2014 – 2015, and will be modified based on results of field studies Will continue to work with professional organizations as well as civil society organizations throughout process

49 Bangkok, Thailand | 16 February | Expected Impact Better conceptualization of health conditions Improved access to health services Formulation of adequate laws, policies and standards of care Reduced discrimination and stigma Respect and protection of human rights of affected populations around the world

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