Presentation on theme: "Geoffrey M. Reed, Ph.D. August 11, 2010 23rd WPATH Symposium"— Presentation transcript:
1Geoffrey M. Reed, Ph.D.August 11, 201023rd WPATH SymposiumBangkok, Thailand16 February 2014The Classification of Sexual Disorders and Sexual Health: Recommendations for ICD-11 Geoffrey M. Reed Ph.D and Eszter Kismödi JD. LLMAPA Council of Representatives1
2World Health Organization Geoffrey M. Reed, Ph.D.August 11, 2010Health classifications are core constitutional responsibility of WHO, ratified by treaty with 194 member countriesAPA Council of Representatives2
3Purposes of ICDGeoffrey M. Reed, Ph.D.August 11, 2010By 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 burdenTo identify vulnerable/at risk populationsTo define obligations of WHO Member States to provide free or subsidized health care to their populationsTo facilitate access to appropriate health care servicesAs a basis for guidelines for care and standards of practiceTo facilitate research into more effective treatmentsAPA Council of Representatives
4ICD-10 RevisionGeoffrey M. Reed, Ph.D.August 11, 2010Mandated by World Health Assembly (Health Ministers of all WHO Member Countries)ICD-10 completed in 1990; longest time without revision in history of ICDCovers all areas of diseases, disorders, and injuries, and health conditions; diagnostic standard for medicine and health systemsProposal development to be completed 2014; field testing 2014 – 2015WHA approval expected 2017World 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 Representatives4
5ICD Revision Orienting Principles Geoffrey M. Reed, Ph.D.August 11, 2010Highest goal is to help WHO member countries reduce disease burdenFocus on clinical utility: facilitate identification and treatment optionsMultidisciplinary, global, multilingual developmentMust be undertaken in collaboration with stakeholdersIntegrity of system depends on independence from pharmaceutical and other commercial influenceFirst, 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 Representatives5
6Mental and Behavioural Disorders International Advisory Group Dr. Geoffrey M. Reed4/9/2017Steven E. Hyman (US), ChairJose 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)
7WHO Objective to Advance Public Good ICD-11 will be a free and open resource for global communityTool for practitioners, researchers, consumers, administrators, and policy makers, governmentsWill be available on internetVersions will be available at low cost, with large discounts to low income countries
8ICD DSM Produced by global health agency of UN Produced by single national professional associationFree and open resource to advance public goodProvides large proportion of APA revenueFor: 1) countries; and 2) front- line service providersFor psychiatristsGlobal, multidisciplinary, multilingual developmentDominated by US, Anglophone perspectiveApproved by World Health AssemblyApproved by APA Board of TrusteesCovers all health conditionsCovers only mental disorders
9Dr. Geoffrey M. Reed World Health Organization Classification System Used by Global Psychiatrists (4887 psychiatrists in 44 countries)2 September 2010Reed et al, World Psychiatry 2011;10:WPA International Congress
10Classification Most Used by Country Dr. Geoffrey M. Reed World Health OrganizationClassification Most Used by Country2 September 2010AFROAMROEMROEUROSEAROWPROWPA International Congress
11MSD and RHRWHO Department of Mental Health and Substance Abuse Department (MSD) responsible for revision of ICD-10 Mental and Behavioural DisordersHas 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 DisordersRelated to RHR’s broader perspective on sexual health and human rightsWorking Group on Sexual Disorders and Sexual Health jointly appointed by both DepartmentsTo report jointly to ICD-11 Advisory Groups for Mental Health and Genito-urinary and Reproductive Medicine
12Revision Steering Group ICD Revision Political Structure for Sexual Disorders and Sexual HealthWorld Health AssemblyRevision Steering GroupMental 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 GroupEndocrinology 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.
13Working 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)
14Scope of Working Group Responsibility: Current ICD-10 Categories F52: Male and female sexual dysfunctions not caused by organic disorder or diseaseF64: Gender identity disordersF65: Disorders of sexual preference (paraphilias)F66: Psychological and behavioural disorders associated with sexual development and orientation
15Development of ICD-11 Proposals WGSDSH developed draft proposals and rationale documentsWHO appointed Peer Review group of 11 global experts, reviewed all proposalsStrong support from reviewers for major changes proposed; proposals revised in response to reviewer commentsField 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 expertsSolicitation of feedback from WPATH and WASGroup discussions with sexual health experts in Mexico and South Africa, particularly focusing on sexual dysfunctions
16Tasks of Working GroupTo 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 settingsTo review proposals for DSM-5 and consider how these may or may not be suited for global applicationsTo assemble and prepare specific proposals, including the placement and organization of relevant categoriesTo provide drafts of the content (e.g., definitions, descriptions, diagnostic guidelines)
19First QuestionShould we have categories to represent transgender phenomena as a part of a classification of health conditions?To identify vulnerable/at risk populationsTo define obligations of WHO Member States to provide free or subsidized health care to their populationsTo facilitate access to appropriate health care servicesAs a basis for guidelines for care and standards of practiceTo facilitate research into more effective treatments✔✔✔✔✔
20Second QuestionHow 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.
21Gender Identity Disorder of Childhood ICD-10 Definition:Gender Identity Disorder of ChildhoodDisorders, 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.
22F64: Issues DebatedDiagnosis must help to identify individuals who need treatment, and support access to appropriate health careHow to ensure non-pathologizing reclassification that:Facilitates appropriate access to non-coerced health careHelps to protect human rightsIs scientifically defensible and grounded in evidence, broadly definedWill be acceptable to transgender people, health care professionals, researchers, and Member States
23F64: Preliminary Working Group Recommendations WHO Working Group Meeting1/24/2012Gender incongruence should be retained in ICD- 11, but should be moved out of mental and behavioural disorders chapterTwo categories proposed:Gender Incongruence of Adolescence and AdulthoodGender Incongruence of ChildhoodThe 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.
24Draft 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.
25Draft 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 genderA 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 genderMake-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
26Draft 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.
27Third QuestionWhere 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?
28Placement of Gender Incongruence Within ICD revision political structure, receptivity to chapter on Sexual Health Conditions, which would include Gender IncongruenceWould also include Sexual Dysfunctions, to combine previously ‘organic’ and ‘nonorganic’ partsOther categories still under discussion, but focus would be narrowName for chapter to be determined; e.g., Sexuality- Related Conditions and DysfunctionsSecretariat is currently developing proposal for structure and content of chapter for provisional approval by RSG
29F65 – Disorders of Sexual Preference (Paraphilias)
30ICD-10 (1990) Disorders of Sexual Preference F65.0 FetishismF65.1 Fetishistic transvestismF65.2 ExhibitionismF65.3 VoyeurismF65.4 PaedophiliaF65.5 SadomasochismF65.6 Multiple disorders of sexual preferenceF65.8 Other disorders of sexual preferenceF65.9 Disorder of sexual preference, unspecified
31Working Group Recommendations I Rename section to Paraphilic DisordersBetter 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
32Working Group Recommendations II Delete diagnostic categories which consist of consensual or solitary sexual behaviourF 65.0 FetishismF 65.1 Fetishistic TransvestismF 65.5 SadomasochismReasons:No public health importanceNo association with distress/functional impairmentInclusion results in stigmatization of these behaviours and individuals practicing them, no discernible health benefit
33F66 - Psychological and Behavioural Disorders Associated with Sexual Development and Orientation
34F66: Current ICD-10 Categories (1990) F66.0: Sexual maturation disorderF66.1: Ego-dystonic sexual orientationF66.2: Sexual relationship disorderF66.8: Other psychosexual development disordersF66.9: Psychosexual development disorder, unspecifiedx0 Heterosexualityx1 Homosexualityx2 Bisexualityx8 Other, including prepubertalMay also be assigned based on gender identity
35F66: 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 processEgo-dystonic homosexuality pathologizes a normal response to social stigmatizationSexual 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 relationshipPsychosexual development disorder: Lacks clinical utility, no scholarly research on the topic, now subsumed into other areas
36F66: Working Group Recommendation WHO Working Group Meeting1/24/2012Deletion of all F66 categories from ICD-11The 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.
37Country-Based Field Testing: Sexual Disorders and Sexual Health Field studies to be conducted with WHO support in Mexico, South Africa, Lebanon (Arab region), Brazil, IndiaIncludes legal and policy analyses for recommendations for Gender Incongruence and Paraphilic DisordersAdditional field studies in high-income countries will be funded by the governments of those countries (Netherlands, UK, Germany, Sweden)
38Country-Based Field Testing: Participating Institutions National Institute of Psychiatry Ramón de la Fuente, MexicoUniversity of Cape Town, South AfricaAmerican University of Beirut, LebanonFederal University of Sao Paulo, BrazilAll India Institute of Medical Sciences, India
39Field 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 environmentOne 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 ChildhoodWhat are trans* people’s experiences of the impact of diagnosis? Helpful? Harmful? The same in adulthood as in childhood?
40Field Studies for Mental Health, Sexual Health, and Primary Care Professionals Dr. Geoffrey M. Reed4/9/2017Global Clinical Practice Network for internet-based field studiesTo sign up, send to:Clinic-Based Field Studies implemented through International Field Study CentersWHO will use two basic approaches for field testing of proposals for ICD-11:an internet-based approach, anda 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.
41Global Clinical Practice Network Dr. Geoffrey M. Reed4/9/2017Registry of global mental health and primary care professionals who have volunteered to participate in internet-based field studies for ICD-11Specific outreach to sexual health professionals and experts in transgender care, including through WPATHRegistrants provide information about training and professional background, practice activities and characteristicsOnline registration available in 9 languages: Arabic, Chinese, English, French, German, Japanese, Portuguese, Russian, and SpanishParticipants are solicited to participate in studies no more than once per month, each requires no more than 30 minutesThe 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.
429,826 Current GCPN Registrants Globally (As of 1 February 2014) Dr. Geoffrey M. Reed World Health Organization9,826 Current GCPN Registrants Globally (As of 1 February 2014)2 September 2010AmericasNorth: 1,028South & Central: 1,066Europe3,580Western PacificAsia: 2,926Oceania: 258Africa167SoutheastAsia457EasternMediterranean298WPA International Congress
44Global GPCN Registrants: Language of Registration
45Countries with Greatest Number of GPCN Registrants Dr. Geoffrey M. Reed World Health OrganizationCountries with Greatest Number of GPCN Registrants2 September 2010RankCountryNPercentage1China194019.82Japan9689.93United States of America7467.64United Kingdom6867.05Russian Federation6526.76France5765.97Mexico4564.78India4234.39Germany3303.410Norway3273.3WPA International Congress
47Implementation: Internet-Based Field Studies via GCPN Dr. Geoffrey M. Reed4/9/2017Participants 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 languagesSolicit through , track solicitation/participationStudies 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 improvementAs 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.
48Next Steps in Developing Categories, Descriptions and Guidelines Proposals will be posted on ICD-11 beta platform for public review and commentComments will be reviewed, and modifications to proposals will be considered on that basisProposals will be field tested in 2014 – 2015, and will be modified based on results of field studiesWill continue to work with professional organizations as well as civil society organizations throughout process
49Expected Impact Better conceptualization of health conditions Geoffrey M. Reed, Ph.D.August 11, 2010Better conceptualization of health conditionsImproved access to health servicesFormulation of adequate laws, policies and standards of careReduced discrimination and stigmaRespect and protection of human rights of affected populations around the worldAPA Council of Representatives