Sexual health in the International Classification of Diseases (ICD): implications for measurement and beyond*

Abstract

This paper examines different dimensions of sexual health as related to the measurement of sexual health indicators and the proposed changes in the International Classification of Diseases to address issues related to sexuality and sexual health with an aim of informing health policy-making and programming. The lack of mechanisms for monitoring and evaluating sexual health outcomes has impeded the development of policies and programmes that support sexual health. The potential impact of changes to the ICD-11 is major and far-reaching given that the ICD is used by countries to define eligibility and access to health services and to formulate relevant policies and laws, and is used by health professionals as a basis for conceptualizing health conditions, treatments and outcomes. Improving the measurement of sexual health-related indicators builds the evidence base on scientific knowledge of sex, sexuality, sexual health and rights. As we stand on the cusp of the post-2015 era and the development agenda transitions to the Sustainable Development Goals, a unique opportunity presents itself to further consider how sexual health is defined, conceptualized, and monitored.

Résumé

Cet article examine différentes dimensions de la santé sexuelle par rapport à la mesure des indicateurs de santé sexuelle et aux changements proposés dans la Classification internationale des maladies (CIM) pour aborder les questions relatives à la sexualité et la santé sexuelle, dans le but de documenter les décisions et la programmation de santé. Le manque de moyens de suivi et d’évaluation de l’état de santé sexuelle a empêché d’élaborer des politiques et des programmes de soutien dans ce domaine. Les changements de la CIM-11 ont un impact potentiel majeur et de grande envergure puisque les pays utilisent la CIM pour définir le droit et l’accès aux services de santé et pour formuler des politiques et législations pertinentes, alors que les professionnels de la santé s’en servent comme base pour conceptualiser les pathologies, les traitements et les résultats. Améliorer la mesure des indicateurs relatifs à la santé sexuelle consolide la base de données sur les connaissances scientifiques en matière de rapports sexuels, sexualité, santé et droits sexuels. Au seuil de l’ère de l’après-2015 et de la transition de l’ordre du jour du développement en faveur des objectifs de développement durable, une occasion unique se présente d’examiner de façon plus détaillée comment la santé sexuelle est définie, conceptualisée et surveillée.

Resumen

Este artículo examina diferentes dimensiones de la salud sexual con relación a la medición de los indicadores de salud sexual y los cambios propuestos en la Clasificación Internacional de Enfermedades para tratar asuntos relacionados con la sexualidad y salud sexual, con la finalidad de informar la formulación de políticas y programas de salud. La falta de maneras de monitorear y evaluar los resultados en salud sexual ha impedido la formulación de políticas y programas que apoyen la salud sexual. El posible impacto de los cambios a la CIE-11 es importante y de gran alcance, dado que la CIE es utilizada por los países para definir la elegibilidad y el acceso a los servicios de salud y para formular políticas y leyes pertinentes, y es utilizada por profesionales de la salud como base para conceptualizar condiciones, tratamientos y resultados en salud. Al mejorar la medición de los indicadores relacionados con la salud sexual, se crea la base de evidencia sobre conocimientos científicos de sexo, sexualidad, salud y derechos sexuales. Ahora que estamos en la cúspide de la era post 2015 y la agenda de desarrollo pasa a ser los Objetivos de Desarrollo Sostenible, se presenta una oportunidad única para considerar más a fondo cómo definir, conceptualizar y monitorear la salud sexual.

Key words:

• sexual health
• sexuality
• International Classification of Diseases
• sexual measurement

Introduction

Sexuality and sexual health are two closely related concepts fundamental to the overall health and well-being of populations. However, progress towards developing a comprehensive approach to sexual health has been relatively slow. Sexual health was first defined in a World Health Organization (WHO) Technical Report series in 1975 as “the integration of the somatic, emotional, intellectual and social aspects of sexual being, in ways that are positively enriching and that enhance personality, communication and love”.¹Twenty years later, the Programme of Action of the International Conference on Population and Development (Cairo, 1994) included sexual health under the definition of reproductive health, indicating that its purpose “is the enhancement of life and personal relations, and not merely counselling and care related to reproduction and sexually transmitted diseases”.² Today, in spite of repeated affirmations and the fundamental importance of sexuality and sexual health to the overall health and well-being of individuals and populations, these issues continue to be poorly understood, associated with stigma, and undermined in inter-governmental negotiations, thereby adversely affecting the availability and use of sexual health programmes and services.^{3 , 4}

This article reviews different dimensions of sexual health as related to the measurement of sexual health indicators and the proposed changes in the Eleventh Revision of the International Classification of Diseases (ICD-11) to address issues related to sexuality and sexual health with the aim of informing health policy-making and programming in this regard.

WHO defines sexual health as a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.⁵ Sexual health cannot be defined, understood or made operational without a broad consideration of sexuality, which underlies important behaviours and outcomes related to sexual health. Sexuality is “…a central aspect of being human throughout life [that] encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviours, practices, roles and relationships. While sexuality can include all of these dimensions, not all of them are always experienced or expressed. Sexuality is influenced by the interaction of biological, psychological, social, economic, political, cultural, legal, historical, religious and spiritual factors”.⁵

To attain these levels of reproductive and sexual health for all persons, WHO was called upon by a World Health Assembly resolution (55.19) to develop a strategy for accelerating progress towards attainment of development goals and targets related to reproductive health. In response, WHO developed a broad and far-reaching Reproductive Health Strategy (RHS).⁶ The RHS highlights that the attainment of these global reproductive and sexual health goals necessitates actions at the service provision, systems, programmatic, legislative, and political levels.⁶

While the holistic definitions of sexual health and sexuality provided by WHO encompass a much broader range of issues, including sexual satisfaction and diverse forms of sexual expression, the measurement or reporting on progress towards achieving sexual and reproductive health has often been defined by presence of a disease. In addition, programmes related to sexual health have been described almost exclusively by interventions to manage sexually transmitted infections (STIs) and unplanned pregnancy.⁷ In this regard, sexual health has been quantified negatively by the burden of ill health such as acquisition of human immunodeficiency syndrome (HIV), other STIs, and related negative health outcomes due to restricted access to contraception and safe abortion, sexual violence and female genital mutilation. Together, these conditions represent a significant disease burden throughout the world.⁸ A study in 2004 estimated that deaths and disabilities related to sexual and reproductive health accounted for 18.4% of the overall global disease burden and 32% of the disease burden among women aged 15 to 44.⁹

Expanding the measurement of indicators related to all aspects of sexual health, both positive and negative, is crucial to informing the cohesive development of sexual health interventions, and the evaluation of linkages between sexual heath interventions and sexual health outcomes, as well as its links with reproductive health and rights. This requires measurement tools to collect internationally comparable data and policies put in place to develop and strengthen health information systems.⁹ Unfortunately, many countries, particularly low- and middle-income countries, struggle to produce meaningful data on sexual health due to lack of resources and sometimes the commitment required.⁹

Framing sexual health to facilitate measurement

International Classification of Diseases

Improvement in the measurement of sexual health requires international cooperation to establish standards for data collection and dissemination as well as global cooperation and international consensus around these issues to promote sexual health standards.¹⁰

Countries have committed to collect and report health statistics using the International Classification of Diseases (ICD).¹¹ The ICD is a health information standard for coding mortality and morbidity, signs, symptoms, reasons for encounter, and external causes of both injury and disease. The classification provides a standard and internationally comparable measurement system to be used in national and international health statistics to inform governments, other public health bodies, health systems, and clinicians. As such, it holds a critical role in framing the interpretation of the concept in the medical and epidemiologic literature; within clinical guidance; in research studies; and as related to medical re-imbursement.^{12 , 13}

Successful ICD-derived data collection facilitates the use and collection of health information in a variety of resource settings, promoting quantitatively informed decisions. These data also facilitate comparison of disease incidence and outcomes between different countries and different health care systems around the world.¹³ The ICD is used to convert a diagnosis into an alphanumeric code, which allows for the easy storage, use and analysis of the data.¹⁴

The ICD and Sexual Health

The current ICD, the Tenth Revision (ICD-10) is divided into 22 chapters. While some chapters such as “Certain infectious and parasitic diseases” are grouped together based on etiology or nature of the disease, most chapters are organized by body or organ system such as “Diseases of the genitourinary system”. The ICD is currently being revised in content and structure to better reflect progress in health sciences and medical practice, and the Eleventh revision of the ICD (ICD-11) is scheduled to be presented for approval during the World Health Assembly in 2018. Improving clinical utility is one goal during this revision process that will allow users to generate better, more meaningful data.^{10 , 15}

Conceptually, sexual and reproductive health are closely linked. However, advances in contraception in the past 50 years have increasingly freed individuals’ sexual behavior from the reproductive consequences. Sexual health is relevant throughout the individual’s lifespan, not only to those in the reproductive years, but also to both the young and the elderly, and sexual health is not limited to physical or organic conditions.

To reflect these nuances in the ICD-11, WHO is working towards providing proposals regarding placement, definitions and other diagnostic information for these categories in the ICD-11. This requires examining issues related the following ICD-10 Chapters:

• Diseases of the genitourinary system

• Pregnancy, childbirth and the puerperium

• Certain conditions originating in the perinatal and neonatal period

• Mental and behavioural disorders

The proposed changes, described below, reflect current scientific evidence and best practices, and support the provision of accessible and high-quality health care services that are more responsive to the needs, experience, and human rights of affected populations.

Revising the classification of conditions related to sexual health

Taking into account the definition of sexual health and the need to measure sexual health, experts proposed the creation and inclusion of a new chapter on sexual health within ICD-11. Presenting the concepts within one chapter helps to better define the realm of sexual health and facilitates related specialized tabulation of data. According to ICD dimensions/criteria, the following concepts related to sexual health can be measured and reported:

• Sexual dysfunctions

• Female genital mutilation

• Gender incongruence

• Sexually transmitted infections

• Violence against women

• Unwanted pregnancy

• Induced abortion

Although these concepts are proposed for presentation together in the sexual health chapter of ICD-11, for statistical tabulation purposes, some are tabulated in their original chapter, such as infections, violence or abortion, while others are now primarily tabulated to the sexual health chapter, e.g., sexual dysfunctions. (Table 1) This article will focus on categories that will be primarily tabulated to the new ICD-11 Chapter, “Conditions related to sexual health”. ICD-11 categories that are cross-referenced into the “Conditions related to sexual health” chapter are briefly described in Box 1

Table 1 Proposed content of the Sexual Health Chapter of ICD-11

Proposed ICD-11 Code Title	ICD-10 Chapter	ICD-11 Chapter
Concepts primarily parented to the new sexual health chapter
Sexual dysfunctions	Split between 2 chapters: Diseases of the genitourinary system & Mental and behavioural disorders	Conditions related to sexual health
Female genital mutilation	Not coded	Conditions related to sexual health
Gender incongruence	Mental and behavioural disorders	Conditions related to sexual health
Concepts removed from the classification
Psychological and behavioural disorders associated with sexual development and orientation	Mental and behavioural disorders	Recommended for deletion
Conditions “cross-listed” to the sexual health chapter
Sexually transmitted infections	Infectious Diseases	Infectious diseases
Violence against women	External causes of morbidity and mortality	External causes of morbidity and mortality
Unwanted pregnancy	Factors influencing health status and contact with health services	Factors influencing health status and contact with health
Induced abortion	Pregnancy, childbirth and the puerperium	Pregnancy, childbirth and the puerperium

Box 1. Conditions related to sexual health

Sexually transmitted infections

Epidemiologic information on HIV and other STIs can be captured through the ICD, where diagnostic codes are organized into a chapter based on etiology or nature of the disease process. In ICD-10, HIV/AIDS has been classified as a communicable disease, separate from sexual and reproductive health. In ICD-11, STIs will remain organized within the infectious disease chapter to reflect their infectious etiology. Because not all infections of the reproductive tract are sexually transmitted, and in order to highlight their significant impact on sexual health, they are cross-referenced to the sexual health chapter. STIs can either be reported etiologically or syndromically. Data collection on STIs demonstrates some of the inherent limitations to classification systems. Currently, ICD-10 codes are used to collect the epidemiological STI data. In resource-limited countries, syndromic STI reporting has been commonly used as a proxy for monitoring because laboratory confirmation of the diagnosis is not readily available or accessible. In these settings, data on selected STI syndromes is collected as a proxy measures for reproductive tract morbidity.¹⁷ However, this becomes problematic because STI syndromes are not included in the ICD-10 inclusion terms. As a result, if epidemiologic data relies on ICD tabulated information, reports of STIs solely by use of proxy measures will be excluded as these will not be captured by either ICD-10 or -11 codes.

Violence against women

The ICD-10 measures sexual violence against women in the “External causes of morbidity and mortality” chapter, coded as “Sexual assault by bodily force” or “Other maltreatment” such as physical abuse. In the ICD-11 proposal, violence against women remains located in the “External causes of morbidity and mortality” chapter and is cross-referenced in the “Sexual health” chapter. Sexual violence is represented within the code “Assault: Privation, neglect or maltreatment: Sexual maltreatment”. “Rape” and “Childhood sexual abuse” are new proposed subtypes of sexual violence. The documentation and coding will strengthen our understanding of the impact of violence on women’s health. Some of the more commonly known sexual health consequences of violence against women are:

• Unintended/unwanted pregnancy

• Abortion/unsafe abortion

• Sexually transmitted infections/HIV

• Pregnancy complications/miscarriage

• Vaginal bleeding or infections

• Chronic pelvic infection

• Urinary tract infections

• Fistula

• Painful sexual intercourse

• Sexual dysfunction

Unwanted pregnancy

Unwanted and unintended pregnancies, for women who carry their pregnancies to term, result in higher rates of premature birth, low birth-weight and other complications. “Unwanted pregnancy” exists as a code in ICD-10 under the “Pregnancy, childbirth and the puerperium” chapter, and is proposed to be retained in ICD-11 to capture reasons for encountering health services related to unwanted pregnancy. It will be cross-listed in “Conditions related to sexual health” chapter in ICD-11.

Induced abortion

The ICD-10 measures induced abortion with the code “medical abortion” in the “Pregnancy, childbirth and the puerperium” chapter. In ICD-11 it is proposed to retain its location and be cross-listed in “Conditions related to sexual health” chapter.

Conditions related to sexual health

Sexual dysfunctions

Relatively little attention has been paid to sexual functioning or satisfaction, despite its being a fundamental aspect of human experience. The small amount of existing data varies across cultures and is linked to differences in culture and beliefs about sexuality. Available evidence suggests that sexual dysfunctions are common and can have a major impact on people’s lives. It is increasingly acknowledged that sexual functioning should also be studied and measured because of its important link to sexual health.⁷

In its approach to the classification of sexual dysfunctions, the ICD-10 embodies a dichotomy between “organic” and “nonorganic” conditions. “Nonorganic” sexual dysfunctions are included in the chapter on “Mental and behavioural disorders”, while “organic” sexual dysfunctions are for the most part listed in the chapter on “Diseases of the genitourinary system”. This distinction is based on the historical duality between the mind and body, where mental disorders without a detectable physiological or structural anomoly, were considered to be nonorganic. However, this approach is not consistent with current evidence or clinical practice.¹⁶

An integrated classification of sexual dysfunctions has been proposed for the ICD-11 to be included in the chapter on “Conditions related to sexual health”, encompassing those sexual dysfunctions previously classified under “Mental and behavioural disorders” and most of those previously classified under “Diseases of the genitourinary system”, in order to more accurately reflect the fact that these conditions have both psychological and biological components. Sexual dysfunctions are described as “syndromes that comprise the various ways in which adult men and women may have difficulty experiencing personally satisfying, non-coercive sexual activities”. Sexual response is a complex interaction of psychological, interpersonal, social, cultural, physiological and gender-influenced processes and one or more of these factors may impact on any stage of the sexual response cycle.

The little evidence that exists shows that many people avoid sex because of their sexual problems, yet few people seek help for them. Identifying other factors associated with reporting sexual functioning may help to better understand how the ICD and other mechanisms can help to improve measurement.⁷ Another potential benefit of an integrated classification of sexual dysfunctions outside the chapter on “Mental and behavioural disorders” may be to normalize and de-stigmatize these conditions.

Female Genital Mutilation

FGM is a violation of the human rights of girls and women. It reflects deep-rooted inequality between the sexes, and constitutes an extreme form of discrimination against women. FGM consists of all procedures that involve partial or total removal of the external female genitalia, or other injury to the female genital organs for non-medical reasons. There are four major types of FGM.²²

One of the key barriers to achieving goals of eradicating FGM and developing strategies for minimizing negative health outcomes is the lack of quality evidence. Including collection of data on FGM and its four subtypes in ICD-11 for the first time, will contribute to the collection of data that will help to inform policy decisions, resource allocation, reduce long-term suffering and disability, and improve training to FGM caregivers.

FGM can cause immediate and long term consequences that vary depending on the type, setting and the woman’s experience. Prevalence of complications of the various FGM types has commonly been discussed as a gap in research. Coding a patient’s personal history of FGM in combination with other gynecologic or pregnancy-related complications will help us to collect data and have a better understanding of the true extent of harm of FGM and incorporate greater specificity to the clinical information that is collected.

Gender Incongruence

Many proposals from multiple stakeholders have supported the process of the reconceptualization of the ICD-10 categories related to gender identity, currently classified in ICD-10 as Mental and Behavioural Disorders.¹⁹ The ICD-10 categories “Transsexualism” and “Gender Identity Disorder of Childhood” have been proposed to be re-conceptualized in ICD-11 as ‘Gender Incongruence of Adolescence and Adulthood’ and ‘Gender Incongruence of Childhood’, respectively. Other categories related to gender identity in the ICD-10 (e.g., ‘Dual Role Transvestism’) have been recommended for deletion. The ICD-11 proposal defines “Gender Incongruence of Adolescence and Adulthood” as “a marked and persistent incongruence between an individual’s experienced gender and the assigned sex, generally including dislike or discomfort with primary and secondary sex characteristics of the assigned sex and a strong desire to have the primary or secondary sex characteristics of the experienced gender. As per suggested criteria, the diagnosis cannot ever 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”.

One of the biggest changes to these categories has been acceptance of the proposal to be moved out of the “Mental and behavioural disorders” chapter. Of the available options for the placement of this category, considering the goals of supporting access to health care services, reducing stigmatization, affirming human rights, and ensuring the depathologization of the diagnosis, the best option appeared to be to include them in the new chapter on “Conditions related to sexual health”, though with awareness of the important distinctions between sexuality and gender identity. These categories are important to the notion of sexuality as defined by WHO, as gender identity and roles, among the many dimensions that may influence or interact with a person’s sexuality.

Sexual orientation

The ICD-10 “Mental and behavioural disorders” chapter included categories for diagnoses based primarily on sexual orientation, even though the ICD-10 states explicitly that sexual orientation alone is not a disorder. Based on a detailed review, little scientific interest in these categories was found and there is no evidence that they are clinically useful: they neither contribute to health service delivery or treatment selection nor provide essential information for public health surveillance.¹⁸ Moreover, use of these categories may create unnecessary harm by delaying accurate diagnosis and treatment. The ICD-11 proposal recommended that these categories be deleted entirely from ICD-11.

Conclusion

Despite past struggles with progress towards developing a comprehensive approach to sexual health and regardless of numerous affirmations on the fundamental importance of sexuality and sexual health to the overall health and well-being of individuals and populations, these issues continue to be poorly understood, associated with stigma, and undermined in inter-governmental negotiations, thereby adversely affecting the availability and use of sexual health programmes and services. By designating a chapter within the ICD-11 on “Conditions related to sexual health”, WHO is making a commitment to addressing the various dimensions of sexual health, with the aim of informing health policy-making and programming.

Lack of ways to monitor and evaluate sexual health outcomes has impeded the development of policies and programmes that support sexual health. The potential impact of changes to the ICD-11 is major and far-reaching, given that the ICD is used by countries to define eligibility and access to health services and to formulate relevant policies and laws, and is used by health professionals as a basis for conceptualizing health conditions, treatments and outcomes.

Collectively, the global community and countries have obligations to ensure the provision of these services and information to promote and protect sexual health in alignment with human rights laws and standards.²⁰

Improving the measurement of sexual health-related indicators builds the evidence base on scientific knowledge of sex, sexuality, sexual health and rights. As we stand on the cusp of the post-2015 era and the development agenda transitions to the Sustainable Development Goals,²¹ a unique opportunity presents itself to further consider how sexual health is defined, conceptualized, and monitored.

Acknowledgements

We would like to thank Robert Jakob and Theodora Wi for their comments and suggestions. We also thank the Genito-urinary Reproductive Medicine Topic Advisory Group, Mental and Behavioural Disorders Topic Advisory Group and the Working Group on Sexual Dysfunctions and Sexual Health for their contributions to the ICD revision process. This work was funded by HRP (the UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction).

Notes

* The authors are staff members of the World Health Organization. The author alone is responsible for the views expressed in this publication and they do not necessarily represent the decisions or policies of the World Health Organization.