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Geoffrey M. Reed, Ph.D. August 11, 2010 23rd WPATH Symposium

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1 Geoffrey M. Reed, Ph.D. August 11, 2010 23rd WPATH Symposium Bangkok, Thailand 16 February 2014 The Classification of Sexual Disorders and Sexual Health: Recommendations for ICD-11 Geoffrey M. Reed Ph.D and Eszter Kismödi JD. LLM APA Council of Representatives 1

2 World Health Organization
Geoffrey M. Reed, Ph.D. August 11, 2010 Health classifications are core constitutional responsibility of WHO, ratified by treaty with 194 member countries APA Council of Representatives 2

3 Purposes of ICD Geoffrey M. Reed, Ph.D. August 11, 2010 By international treaty, 194 WHO Member States agree to use ICD as standard for collection and reporting of health information Why? 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 APA Council of Representatives

4 ICD-10 Revision Geoffrey M. Reed, Ph.D. August 11, 2010 Mandated by World Health Assembly (Health Ministers of all WHO Member Countries) ICD-10 completed in 1990; longest time without revision in history of ICD 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 – 2015 WHA approval expected 2017 World Health Assembly (health ministers of 193 WHO Member Countries) directed WHO to undertake revision of ICD-10. ICD originally published as a classification of causes of death; has been revised at approximately 10-year intervals since then. Expanded to cover morbidity as well as mortality, issues beyond diseases and injuries. Work on ICD-10 was completed in 1990, nearly 20 years ago. Since then is longest time in ICD’s history without a revision. Member states may be reluctant to change because it means changing systems and infrastructure, professionals may resist having to learn a new system. However, ICD must be based on best available scientific knowledge and keep pace with significant advances in health care. Since ICD-10 was approved important new disease entities have emerged (e.g., SARS, avian flu) and medical and public health advances have made dramatic contributions to understanding of health and disease (e.g., genetics, neuroscience). Also a need for the ICD to be more compatible with other WHO classifications, particularly the ICF (focusing on functional consequences of health states). APA Council of Representatives 4

5 ICD Revision Orienting Principles
Geoffrey M. Reed, Ph.D. August 11, 2010 Highest goal is to help WHO member countries reduce disease burden Focus on clinical utility: facilitate identification and treatment options Multidisciplinary, global, multilingual development Must be undertaken in collaboration with stakeholders Integrity of system depends on independence from pharmaceutical and other commercial influence First, the relevance of the classification to WHO’s core task of helping countries to reduce disease burden-- that is, the public health importance of mental and behavioural disorders classification-- is our highest priority. Related to that, we will maintain a strong focus on the clinical utility of the classification-- its usefulness and usability for the identification and treatment of people with mental disorders, by those health workers who actually encounter them, throughout the world. Third, we will conduct the revision in collaboration with a range of stakeholders, including WHO member states, service users, and multidisciplinary health professionals. And fourth, we will take conflict of interest issues extremely seriously. The integrity of the entire classification system depends on its independence from commercial influences, especially pharmaceutical companies. APA Council of Representatives 5

6 Mental and Behavioural Disorders International Advisory Group
Dr. Geoffrey M. Reed 4/9/2017 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 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 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 Dr. Geoffrey M. Reed World Health Organization
Classification System Used by Global Psychiatrists (4887 psychiatrists in 44 countries) 2 September 2010 Reed et al, World Psychiatry 2011;10: WPA International Congress

10 Classification Most Used by Country
Dr. Geoffrey M. Reed World Health Organization Classification Most Used by Country 2 September 2010 AFRO AMRO EMRO EURO SEARO WPRO WPA International Congress

11 MSD and RHR WHO Department of Mental Health and Substance Abuse Department (MSD) responsible for revision of ICD-10 Mental and Behavioural Disorders 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
ICD Revision Political Structure for Sexual Disorders and Sexual Health World Health Assembly Revision Steering Group Mental Health Advisory Group (Chapters F, Z) G-U & Rep Med Advisory Group (Chapter N) Internal Medicine Advisory Group (Chapter E) ... ... Sexual Disorders and Sexual Health Working Group 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.

13 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 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 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 Tasks of Working Group 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 To review proposals for DSM-5 and consider how these may or may not be suited for global applications To assemble and prepare specific proposals, including the placement and organization of relevant categories To provide drafts of the content (e.g., definitions, descriptions, diagnostic guidelines)

17 Overview of ICD-11 Proposals

18 F64 – Gender Identity Disorders

19 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 Second Question 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 Gender Identity Disorder of Childhood
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 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 F64: Preliminary Working Group Recommendations
WHO Working Group Meeting 1/24/2012 Gender incongruence should be retained in ICD- 11, but should be moved out of mental and behavioural disorders chapter Two categories proposed: Gender Incongruence of Adolescence and Adulthood Gender Incongruence of Childhood The ICD-10 defines a “disorder” as “a clinically recognizable set of symptoms or behaviors associated with distress and interference with personal functions. Social deviance or conflict alone, without personal dysfunction,” is not a mental disorder. The ICD-9 explicitly states that sexual orientation (sic) is not a disorder. So we have something that is no a disorder, but still pieces of it seem to draw attention from the mental health field. Removing the F66 codes, in the context of international perspectives, has a single disadvantage of removing reference to minority sexual orientation expression when many parts of the world still believe that homosexuality, ipso facto, is a mental disorder. One of the issues that the working group has struggled with is whether this sentiment reflects concerns other than those covered under the umbrella of human rights. In our review of the existing state of the field, we have found no appreciable evidence that the F66 codes serve a useful clinical purpose. Many countries do not report any use of the F66 codes; there is no apparent public health need to track this information, and research on concepts such as sexual maturation disorder or ego-dystonic homosexuality is essentially non-existent. We continue to search for evidence in this regard and our work over the next several months will seek to evaluate whether these codes are actually used in clinical settings internationally. If not, they are inconsistent with the basic principles guiding revisions to the ICD-11 and should be deleted.

24 Draft Definition - GIAA
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 Draft Diagnostic Guidelines – GIC I
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 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 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 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 F65 – Disorders of Sexual Preference (Paraphilias)

30 ICD-10 (1990) 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 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 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 F66 - Psychological and Behavioural Disorders Associated with Sexual Development and Orientation

34 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 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 F66: Working Group Recommendation
WHO Working Group Meeting 1/24/2012 Deletion of all F66 categories from ICD-11 The ICD-10 defines a “disorder” as “a clinically recognizable set of symptoms or behaviors associated with distress and interference with personal functions. Social deviance or conflict alone, without personal dysfunction,” is not a mental disorder. The ICD-9 explicitly states that sexual orientation (sic) is not a disorder. So we have something that is no a disorder, but still pieces of it seem to draw attention from the mental health field. Removing the F66 codes, in the context of international perspectives, has a single disadvantage of removing reference to minority sexual orientation expression when many parts of the world still believe that homosexuality, ipso facto, is a mental disorder. One of the issues that the working group has struggled with is whether this sentiment reflects concerns other than those covered under the umbrella of human rights. In our review of the existing state of the field, we have found no appreciable evidence that the F66 codes serve a useful clinical purpose. Many countries do not report any use of the F66 codes; there is no apparent public health need to track this information, and research on concepts such as sexual maturation disorder or ego-dystonic homosexuality is essentially non-existent. We continue to search for evidence in this regard and our work over the next several months will seek to evaluate whether these codes are actually used in clinical settings internationally. If not, they are inconsistent with the basic principles guiding revisions to the ICD-11 and should be deleted.

37 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 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 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 Field Studies for Mental Health, Sexual Health, and Primary Care Professionals
Dr. Geoffrey M. Reed 4/9/2017 Global Clinical Practice Network for internet-based field studies To sign up, send to: Clinic-Based Field Studies implemented through International Field Study Centers WHO will use two basic approaches for field testing of proposals for ICD-11: an internet-based approach, and a clinical settings (clinic-based) approach. Internet-based field testing will be implemented primarily through the Global Clinical Practice Network, a global network of individual mental health and primary care practitioners who have agreed to participate in internet-based field studies for the ICD-11. Clinic-based studies will be managed through the network of collaborating International Field Study Centers (IFSC) that have been appointed by WHO.

41 Global Clinical Practice Network
Dr. Geoffrey M. Reed 4/9/2017 Registry of global mental health and primary care professionals who have volunteered to participate in internet-based field studies for ICD-11 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 The Global Clinical Practice Network (GCPN) is a global registry of individual mental health and primary care practitioners who will participate in internet-based field studies based on their professional interests and areas of expertise, as well as the characteristics of their practice. Any mental health or primary care professional (e.g., psychiatrists, psychologists, primary care physicians, nurses, social workers, counsellors, community health workers) who has completed his or her training and is qualified to practice in his or her country is eligible to participate in the GCPN. As a part of registration, participants are asked to provide contact information and specific information about your work settings, activities, and interests to help determine eligibility for specific studies. Registration in the Global Clinical Practice Network is currently available in 8 languages, including Arabic, Chinese, English, French, German, Japanese, Russian, and Spanish. Global Clinical Practice Network participants are asked to review materials, offer feedback about ideas or concepts that WHO is developing, and participate in specific types of field studies based on your own professional interests and areas of expertise. Global Clinical Practice Network participants will be asked to participate in a study no more than once per month, and each study will take no more than about 30 minutes to complete.

42 9,826 Current GCPN Registrants Globally (As of 1 February 2014)
Dr. Geoffrey M. Reed World Health Organization 9,826 Current GCPN Registrants Globally (As of 1 February 2014) 2 September 2010 Americas North: 1,028 South & Central: 1,066 Europe 3,580 Western Pacific Asia: 2,926 Oceania: 258 Africa 167 Southeast Asia 457 Eastern Mediterranean 298 WPA International Congress

43 Global GCPN Registrants: Disciplinary Representation

44 Global GPCN Registrants: Language of Registration

45 Countries with Greatest Number of GPCN Registrants
Dr. Geoffrey M. Reed World Health Organization Countries with Greatest Number of GPCN Registrants 2 September 2010 Rank Country N Percentage 1 China 1940 19.8 2 Japan 968 9.9 3 United States of America 746 7.6 4 United Kingdom 686 7.0 5 Russian Federation 652 6.7 6 France 576 5.9 7 Mexico 456 4.7 8 India 423 4.3 9 Germany 330 3.4 10 Norway 327 3.3 WPA International Congress

46 Global GPCN Registrants: Areas of Expertise

47 Implementation: Internet-Based Field Studies via GCPN
Dr. Geoffrey M. Reed 4/9/2017 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 As noted, once registered in the Global Clinical Practice Network, participants will receive survey requests no more than once a month, and each survey will take approximately 30 minutes to complete. Samples for specific studies are randomly selected from GCPN participants based on predetermined selection criteria based on the aims of that particular study. For example, one study might wish to compare the responses of substance abuse experts and general clinicians, and another study might require that participants spend a certain proportion of their time providing services to children or adolescents. Necessary sample sizes are determined using power analyses. Participants are sent invitations by s, which contain personalized participation links that are good only for that person and may be used only one time. Data collection for the first internet-based study, on Disorders Specifically Associated with Stress, has now been completed in English and Japanese with approximately 1500 participants, and data collection in Spanish is now underway. Studies in other areas will be introduced at a rate of approximately one per month. The next studies to in the sequence will focus on Feeding and Eating Disorders and Psychotic Disorders, but nearly all areas of psychopathology will be covered over the next year. For the next field studies and going forward, we will be conducing field studies in Chinese and French, in addition to English, Spanish, and Japanese. We are hoping to soon to be able to introduce studies in Russian language.

48 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 Expected Impact Better conceptualization of health conditions
Geoffrey M. Reed, Ph.D. August 11, 2010 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 APA Council of Representatives

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