T he Classification of - PowerPoint Presentation

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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

Bangkok, Thailand

16 February 2014

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World Health Organization

Health classifications are core constitutional responsibility of WHO, ratified by treaty with 194 member countries

Slide3

Purposes of ICD

By international treaty, 194 WHO

M

ember 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

Slide4

ICD-10 Revision

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

Slide5

ICD Revision Orienting Principles

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

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Mental and Behavioural Disorders International Advisory Group

Steven 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)

Slide7

WHO 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

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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

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Classification System Used by Global Psychiatrists(4887 psychiatrists in 44 countries)

Reed et al,

World Psychiatry 2011

;10:118-131

Slide10

Classification Most Used by Country

AFRO

AMRO

EMRO

EURO

SEARO

WPRO

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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

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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. Theseare 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

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Working Group on Sexual Disordersand 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

)

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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

Slide15

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;

p

roposals 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

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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)

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Overview of ICD-11 Proposals

Slide18

F64 –

Gender Identity Disorders

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First Question

Should 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

✔

✔

✔

✔

✔

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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.

Slide21

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.

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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

Slide23

F64: Preliminary Working Group Recommendations

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

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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

.

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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

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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.

T

here

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.

Slide27

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?

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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

O

ther 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

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F65 –

Disorders of Sexual Preference (

Paraphilias)

Slide30

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

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Working Group Recommendations I

Rename section to

Paraphilic

Disorders

B

etter 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

Slide32

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

Slide33

F66 -

Psychological and Behavioural Disorders Associated with Sexual Development and Orientation

Slide34

F66: Current ICD-10 Categories (1990)

F66.0

: Sexual

maturation

d

isorder

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

Slide35

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

Slide36

F66: Working Group Recommendation

Deletion of all F66 categories from ICD-11

Slide37

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)

Slide38

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

Slide39

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?

Slide40

Field Studies for Mental Health, Sexual Health, and Primary Care Professionals

Global

Clinical Practice

Network

for

internet-based field studies

To sign up, send e-mail to:

gcpn@who.int

Clinic-Based Field Studies

implemented through International Field Study Centers

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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

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

Slide42

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

Mediterranean298

Southeast

Asia457

Western

Pacific

Asia: 2,926

Oceania: 258

Slide43

Global GCPN Registrants:Disciplinary Representation

Slide44

Global GPCN Registrants:Language of Registration

Slide45

Countries with Greatest Number of GPCN Registrants

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

Slide46

Global GPCN Registrants:

Areas of Expertise

Slide47

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 email, 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

Slide48

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

Slide49

Expected Impact

B

etter conceptualization of

health

conditions

I

mproved access

to health services

F

ormulation of adequate laws

,

policies and standards of care

Reduced

discrimination and stigma

R

espect and protection of human

rights of affected populations around the

world

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