Public stakeholders’ comments on ICD-11 chapters related to mental and sexual health
Open accessAbstract
A unique strength of the development of the World Health Organization (WHO)'s ICD-11 classification of mental, behavioural and neurodevelopmental disorders has been the active input from multiple global stakeholders. Draft versions of the ICD-11 for Morbidity and Mortality Statistics (MMS), including brief definitions, have been available on the ICD-11 beta platform (https://icd.who.int/dev11/l-m/en) for public review and comment for the past several years1. Submissions were reviewed by the WHO for the development of both the MMS version of the ICD-11 and the version for clinical use by mental health specialists, the Clinical Descriptions and Diagnostic Guidelines (CDDG)1. Here, we summarize common themes of the submissions for the categories that generated the greatest response. All comments and proposals were reviewed for categories currently classified in the chapter on mental and behavioural disorders in ICD-10, although some of these have been reconceptualized and moved to new ICD-11 chapters on sleep-wake disorders and conditions related to sexual health2. Between January 1, 2012 and December 31, 2017, 402 comments and 162 proposals were submitted on mental, behavioural and neurodevelopmental disorders, sleep-wake disorders, and conditions related to sexual health. The largest number of submissions related to mental, behavioural and neurodevelopmental disorders focused on compulsive sexual behaviour disorder (N=47), complex post-traumatic stress disorder (N=26), bodily distress disorder (N=23), autism spectrum disorder (N=17), and gaming disorder (N=11). Submissions on conditions related to sexual health mainly addressed gender incongruence of adolescence and adulthood (N=151) and gender incongruence of childhood (N=39). Few submissions were related to sleep-wake disorders (N=18). We performed qualitative content analysis to identify the main themes of submissions related to categories on which there were at least 15 comments. Thus, 59% of all comments and 29% of all proposals were coded. Submissions were independently rated by two assessors. Multiple content codes could apply to each submission. Inter-rater reliability was calculated using Cohen's kappa; only codings with good inter-rater reliability (κ≥⃒0.6) are considered here (82.5%). Compulsive sexual behaviour disorder received the highest number of submissions of all mental disorders (N=47), but often from the same individuals (N=14). The introduction of this diagnostic category has been passionately debated3 and comments on the ICD-11 definition recapitulated ongoing polarization in the field. Submissions included antagonistic comments among commenters, such as accusations of a conflict of interest or incompetence (48%; κ=0.78) or claims that certain organizations or people would profit from inclusion or exclusion in ICD-11 (43%; κ=0.82). One group expressed support (20%; κ=0.66) and considered that there is sufficient evidence (20%; κ=0.76) for inclusion, whereas the other strongly opposed inclusion (28%; κ=0.69), stressing poor conceptualization (33%; κ=0.61), insufficient evidence (28%; κ=0.62), and detrimental outcomes (22%; κ=0.86). Both groups cited neuroscientific evidence (35%; κ=0.74) to support their arguments. Few commenters proposed actual changes to the definition (4%; κ=1). Instead, both sides discussed nosological questions such as conceptualization of the condition as impulsivity, compulsivity, behavioural addiction or expression of normal behavior (65%; κ=0.62). The WHO believes that the inclusion of this new category is important for a legitimate clinical population to receive services4. Concerns about overpathologizing are addressed in the CDDG, but this guidance does not appear in the brief definitions available to beta platform commenters. A number of submissions related to complex post-traumatic stress disorder supported its inclusion in ICD-11 (16%; κ=0.62), with none explicitly arguing against inclusion (κ=1). However, several submissions suggested changes to the definition (36%; κ=1), submitted critical comments (24%; κ=0.60) (e.g., concerning the conceptualization), or discussed the diagnostic label (20%; κ=1). Several comments (20%; κ=0.71) emphasized that recognition of this condition as a mental disorder would stimulate research and facilitate diagnosis and treatment. A majority of submissions regarding bodily distress disorder were critical, but were often made by the same individuals (N=8). Criticism mainly focused on conceptualization (48%; κ=0.64) and the disorder name (43%; κ=0.91). Use of a diagnostic term that is closely associated with the differently conceptualized bodily distress syndrome5 was seen as problematic. One criticism was that the definition relies too heavily on the subjective clinical decision that patients' attention directed towards bodily symptoms is "excessive". A number of comments (17%; κ=0.62) expressed concern that this would lead to patients being classified as mentally disordered and
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“The inclusion followed extensive theoretical debates about the classification and conceptualization of compulsive sexual behaviors (CSB), and considerable discussion centered on the poor conceptualization of CSB (Fuss et al., 2019).”
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“There are ongoing debates about the ICD-11 classification of CSBD based on limited neurobiological findings (Fuss et al., 2019).”
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“Investigating further the neurobiological underpinnings of PPU may aid in appropriate classification efforts and prevention and treatment advances (Fuss et al., 2019).”
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“While there has been a paucity of experimental research into underlying mechanism of CSBD, the decision to conceptualize CSBD as an impulse control disorder was not based on data showing that underlying mechanisms are primarily problems of impulse control (Fuss, Lemay, et al., 2019).”
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“Enfin, les parties prenantes issues du public ont pu soumettre des commentaires sur la structure et le contenu proposés du chapitre sur les troubles mentaux, comportementaux et neurodéveloppementaux de la CIM-11 [29].”
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- Authors
- Fuss, J., Lemay, K., Stein, D. J., Briken, P., Jakob, R., Reed, G. M., & Kogan, C. S.
- Affiliations
- University Medical Center Hamburg-Eppendorf (DE)
- University of Ottawa (CA)
- University of Cape Town (ZA)
- World Health Organization (CH)
- Venue
- World Psychiatry
- Publisher
- Wiley
- Published
- 2019-05-06
- Volume
- 18
- Issue
- 2
- Pages
- 233-235
- ISSN
- 1723-8617 (ISSN-L)
- 2051-5545
- PMC
- PMC6502458
- OpenAlex
- W2944017699
- Cited by
- 61
- References
- 9
- Citations by year
- 2026: 7 · 2025: 4 · 2024: 5 · 2023: 6 · 2022: 7 · 2021: 16 · 2020: 11 · 2019: 3 · 2017: 1
- FWCI
- 56.83
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- World Psychiatry (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- World Health Organization
- Topics
- Social Sciences › Arts and Humanities › Philosophy › Mental Health and Psychiatry
- Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
- Health Sciences › Health Professions › Medical Terminology › Medical Research and Practices
- Keywords
- ICD-11, mental illness, sexual health, sleep-wake disorders, complex PTSD, autism spectrum disorder, gaming disorder, gender incongruence, gender dysphoria, diagnostic classification, clinical criteria, stakeholder engagement, ICD-10 transition
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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