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The understandability of diagnostic criteria towardsthe latest version of ICD: A national participatoryresearch for a more democratic approach in theconceptualization of the term “depressive episode”amongst service users in GreeceFotis Vasilopoulos 

Association for Regional Development and Mental HealthMarina C. Skourteli 

Association for Regional Development and Mental HealthVasiliki Kouroglou  ( v.kouroglou@yahoo.gr )

Association for Regional Development and Mental HealthVirginia E. Angelou 

Association for Regional Development and Mental HealthPenny Kalpaxi 

Association for Regional Development and Mental HealthVenetsanos Mavreas 

Association for Regional Development and Mental HealthStelios Stylianidis 

Association for Regional Development and Mental Health

Research Article

Keywords: depressive episode, understandability, service users, ICD-11

Posted Date: July 8th, 2022

DOI: https://doi.org/10.21203/rs.3.rs-1814713/v1

License: This work is licensed under a Creative Commons Attribution 4.0 International License.  Read Full License

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Abstract

PurposeThe present study was conducted in the framework of the wider international research of WHO for therevision of the ICD with regards to the understandability and relevance of the diagnostic terms of“depressive episode”.

MethodsFifteen service users with a formal diagnosis of “depressive episode” were recruited from an outpatientservice in Athens, Greece, and completed a questionnaire on the understandability of the diagnostic termsof “depressive episode” during a semi-structured interview.

ResultsThe results showed that most of the commonly encountered symptoms of “depressive episode” wereunderstood, but did not necessarily re�ect with accuracy the lived experience of the participants.Preliminary correlations with regards to socioeconomic and other factors emerged.

ConclusionOverall, the �ndings aim to initiate a dialogue on the understandability of diagnostic terms, the way theyimpact the lives of people with a diagnosis, and possible ways of re-conceptualizing medical terminology.

1. Introduction And Literature ReviewSince the 1980s we have been increasingly witnessing an international sociopolitical move, towards theinclusion of users of mental health services and their carers in the formulation and delivery of psychiatriccare. Rappaport was the �rst to introduce the notion of empowerment, referring to the inner capacity ofpeople with mental health di�culties to utilize their inner strengths and experiences (includingexperiences of mental illness, hospital admissions and social exclusion) to create new knowledge, skills,rights and accomplishments, in order to ultimately regain control of their lives [1, 2, 3]. In this context,mental health service users and their carers are considered to be ‘experts by experience’ and this expertiseis increasingly being taken into account for the planning and implementation of mental health policies. Inthat respect, participatory research constitutes an integral part of the methodology used in mental healthsettings [4, 5, 6].

1.1 The French WHO Collaborating Center (WHO-CC, Lille) for Research and Training in Mental Health forthe latest revision of the ICD, ICD 11

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The 11th version of the ICD [3] was developed and came into effect in January 2022, whilst futureupdates are planned to take place every ten years. Whilst ICD-10 was primarily aimed at professionals, akey concern of the World Health Organization (WHO) was to ensure that the medical vocabulary used inthe revised version of the ICD is understood by all stakeholders, independently of o�cial language andculture. Equally, and as clinical utility is based on communication, the WHO decided for the �rst time toinvolve all stakeholders in the revision process, including users of mental health services and their carers[4, 6].

According to the WHO, depression is acknowledged as the commonest mental health diagnosis and theleading cause of disability worldwide [7]. It is reported that despite the wide availability of treatments(pharmacological, psychotherapeutic, psycho-educational), less than half of people affected bydepression actually seek or indeed bene�t from such treatments, primarily due to lack of informationregarding the clinical manifestation of depression or negative stereotypes associated by the diagnosis.Further, there seems to be increased rates of both over- and under- diagnosis of depression, which mayre�ect diversions in the methodology of its assessment, the accuracy of diagnoses and thus therecommendations for treatment [5, 6].

Within this context, the WHO international research team, under the direction of the French WHOCollaborating Center (WHO-CC, Lille) for Research and Training in Mental Health (WHO-CC) in Lille, incollaboration with the WHO Geneva and the Medical, Scienti�c, Health, Mental Health and SocietyResearch Centre (CERMES), developed an innovative protocol aiming to assess the reported levels ofunderstanding for the diagnoses of “depressive episode” amongst service users and their carers. Inparticular, researchers investigated the extent to which ICD vocabulary is accessible, what kind ofassociated affect it evokes, whether and in what ways service users and carers would like to rephraseterms corresponding to the clinical classi�cation of symptoms for the diagnoses of “depressive episode”and whether current diagnoses are utilized to communicate about their mental health condition to familyand professionals. Users and carers were involved in all stages of the project, namely the design of theprotocol, the review and pretesting of materials as well as the interpretation of results. An initial meetingwas held prior to the commencement of the study, aiming to bring all international collaborators togetherwith the view to agree on an international consensual protocol, to develop shared materials, to discussappropriate translations and to receive training. A second meeting took place at the end of data collectionand preliminary analyses in order to discuss and interpret results and to agree on recommendations to beaddressed to the WHO. The protocol was implemented from August 2016 to March 2018 in 20 sites,across 15 countries: Algeria, Canada, France, Greece, Hungary, India, Italy, Lebanon, Lithuania,Madagascar, Mauritania, Mexico, Morocco, Spain and the UK. The overall sample consisted of 279 usersand 232 carers for the diagnostic category of “depressive episode” [4, 6].

Results from the international study, revealed that for the diagnostic category of “depressive episode,”more than 90% of both carers and users said that they understood the term, with no differences beingnoted between the two groups. With regards to the feelings that the term “depressive episode” evokes, themajority of participants (both carers and users) reported associating the term with something negative,

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again with no differences between groups. Only 1/3 of participants (both users and carers) suggested areformulation of the term “depressive episode”; the most frequently reported reasons for rephrasingincluded clarity and understandability of the term (38%), followed by matching experience (37,5%) andpositivity (12%). Finally, the majority of carers and users reported talking to friends and family about their(or the person they care for) mental health state but would not use the term “depressive episode” todescribe their experience.

Within this context, this study constitutes part of the wider, international study for the revision of the ICD-10 and will focus on �ndings on a Greek national level with regards to the understanding of thediagnostic category of “depressive episode”. The present paper outlines only the �ndings emerging fromservice users taking part in the research for the diagnosis of “depressive episode”, whilst results emergingfrom carer data will be extensively presented elsewhere.

2. Methodology

2.1 Research Setting- ParticipantsThe present study took place within the context of E.P.A.P.S.Y. ‘Franco Basaglia’ Day Centre, an outpatientservice in Athens, Greece that offers a range of psychosocial rehabilitation services to service users withsevere mental health di�culties including schizophrenia, depression, somatoform, affective andpersonality disorders. Participants were service users at the Day Centre and needed to have beendiagnosed with “depressive episode” in order to meet inclusion criteria for the study. It needs to be notedhere that participants recruited for the purposes of the present study did indeed meet criteria for thediagnostic category of depressive episode on the basis of experiencing common symptoms, however, asexpected, their individual experiences, life context and social networks varied signi�cantly [8]. Apart forthe two lead researchers who co-author the present publication and who participated in the developmentof the research protocol in Lille, two research assistants, who were mental health professionals andreceived training according to the international protocol, were recruited as interviewers who conductedindividual interviews with research participants. Two service users with a diagnosis of “depressiveepisode” respectively were closely involved throughout the development, translation and review ofresearch materials for the present study. In terms of symptom selection within the present study andprimarily for purposes of managing the volume of the data, a focus group of senior consultantpsychiatrists was carried out to identify those diagnostic criteria that are the most representative andprominent for the Greek sample of service users and their experiences regarding the diagnosis.

2.2 EthicsThe protocol complied with the Helsinki Declaration of 1975, as revised in 2008, and the WHO GoodClinical Research Practice (GCRP) guidelines. For the Greek national part of the study, the protocol wassubsequently submitted for ethical approval to EPAPSY’s board of directors, whilst informed writtenconsent was obtained from every participant.

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2.3 Materials- ProcedureThe present study utilized the semi-structured questionnaire that was developed by the French WHO-CCand the methodology of its translation and cultural adaptation in the Greek language and culture issummarized in the following steps: (a) preparation/development of the questionnaire, (b) forwardtranslation of the original questionnaire from English to the Greek language, (c) backward translation ofthe translated Greek questionnaire back into the English language and in order to verify its conceptualequivalence, (d) veri�cation by a review team that included service users with diagnoses of “depressiveepisode”, (e) the conduct of a pilot study in a small target- sample of service users with diagnoses of“depressive episode” and their carers and (f) an overall assessment and �nalization of the translationand cultural adaptation process.

Questionnaires consisted of two main sections: a demographic and background information sectionrecording information on gender, age, marital status, family background, occupational and educationalstatus and a second section exploring more speci�cally aspects of the terms “depressive episode” (asde�ned by the ICD-11) across the following four areas, namely understanding of individual words andphrases, feelings and associations evoked by the terms, suggestions around rephrasing words or phrasesof the terms and usefulness of the terms in the ways users with a diagnosis of “depressive episode”communicate about their condition. Participants were informed about the aims and nature of the studyand informed consent was obtained. Semi-structured interviews were conducted during which thequestionnaire was administered to service users and their carers. Interviewers were mental healthprofessionals who were trained to adhere to the ethical guidelines of the research protocol by adjustinginterview time and aiding participants that may have experienced di�culties or fatigue during thecompletion process. Following completion of the questionnaire, participants were again debriefed andwere asked whether they would like to participate further in the review of �ndings, during the secondstage of the study.

3. ResultsOn a national level, the research team chose to focus on the �ndings regarding the understandability onbehalf of service users of six diagnostic criteria for “depressive episode”, in particular those of depressedmood, beliefs of low self-worth or excessive or inappropriate guilt that may be manifestly delusional,psychomotor agitation or retardation, signi�cantly disturbed sleep or excessive sleep, hopelessness aboutthe future and recurrent thoughts of death, and recurrent suicidal ideation or evidence of attemptedsuicide.

3.1 Statistical AnalysesAll data were collated and analyzed using IBM SPSS Statistics (version 25), and an alpha level of p < .05was set for all analyses. To analyze the socio-demographic data of the sample and to present an

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overview of the results, descriptive statistics were used. For bi-variate analysis, Fisher’s Exact Test wasused due to the small number of participants.

3.2 DemographicsThe participants (n = 15) were 7 men and 8 women, and their age ranged between 41 and 74 years (M = 53.5 years, SD = 10.00). Table 1 below presents demographics with regard to age of onset at �rst episode,educational level and marital status for the diagnostic categories of depressive episode.

Table 1Descriptive Statistics

Variable Sample

Age of onset

18-

18–24

25–34

35–44

45–54

55+

N = 15

4 (26.7%)

1 (6.7%)

4 (26.7%)

3 (20%)

1 (6.7%)

2 (13.3%)

Marital status

Married/Civil partnership

Single

Separated/Divorced

Widowed

N = 15

4 (26.7%)

7 (46.7%)

3 (20%)

1 (6.7%)

Educational status

Primary education

Secondary education

Tertiary education

Master’s level studies

N = 15

1 (6.7%)

5 (33.3%)

7 (46.7%)

2 (13.3%)

Those participants whose �rst episode occurred at 18-years-old or younger were presently unemployed,whereas the participants who had their �rst episode within the age range of 35- 44-years were presently inemployment. The participants whose �rst depressive episode occurred at 55-years-old or older wereretired at the time of data collection; most of the participants (46.67%) were single, 26.67% were marriedor in a civil partnership, and 20% were separated or divorced. Six of the participants reported havingchildren, and 9 participants had no children. Seven participants reported that their state of health at the

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time of their participation in the study was “average”, 4 participants reported that it was “good”, 2reported that it was “bad”, and 2 participants reported that it was “very good”.

3.3 CorrelationsParticipants without children were more likely to not understand the phrase “psychomotor agitation orretardation” than participants with children (p = .01). Participants with an early onset of their �rstdepressive episode (18-years-old or less) were marginally more likely to use the phrase “beliefs of lowself-worth or excessive or inappropriate guilt that may be manifestly delusional” to describe theirexperience (p < .05). Lastly, participants who reported that they understood the phrase “signi�cantlydisrupted sleep or excessive sleep” were more likely to use the phrase “depressed mood” to describe theirexperience (p < .05). Table 2 summarizes the level of understanding for the 6 chosen phrases for theanalysis. Indicatively, out of the six phrases, the highest level of understanding was reported for thephrases “depressed mood” (100%) and “hopelessness about the future” (100%), with the second highestbeing “signi�cantly disrupted sleep or excessive sleep” (93.3%). The phrase “psychomotor agitation orretardation” was the least understood (40% reported not understanding the phrase).

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Table 2Percentage of understanding of six of the essential diagnostic features of depression

Variable Sample

Depressed mood

Yes

No

N = 15

15(100%)

-

Beliefs of low self-worth or excessive or inappropriate guilt that may be manifestlydelusional

Yes

No

N = 15

13(86.7%)

2 (13.3%)

Hopelessness about the future

Yes

No

N = 15

15(100%)

-

Recurrent thoughts of death, recurrent suicidal ideation, or evidence of attemptedsuicide

Yes

No

N = 15

13(86.7%)

2 (13.3%)

Signi�cantly disrupted sleep or excessive sleep

Yes

No

N = 15

14(93.3%)

1 (6.7%)

Psychomotor agitation or retardation

Yes

No

N = 15

9 (60%)

6 (40%)

4. DiscussionThe present study aimed to explore the understandability and relevance of the terms ‘depressive episode’in a Greek sample of service users with these diagnoses in the wider context of the WHO internationalstudy for the revision of the ICD- 10. Preliminary analysis of the results on an international level revealedvast differences between the West and the developing world not only in terms of access to mental healthservices but also in the conceptualization of mental health terminology itself. In some countries, aconsiderable lack of psychiatrists was noted (i.e. only two psychiatrists were recorded in Mauritania)

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whilst in others there was a complete absence of the term ‘service user’ and translation of psychiatricterms in local dialects was particularly di�cult (India, Algeria, Mauritania). Such �ndings demonstrate thesocio-cultural parameters of the notions of mental health and illness and the challenges of constructing acommon language that is meaningful and re�ects a shared reality with regards to psychiatricterminology. Nevertheless, some terms such as ‘depressive episode’ and ‘depression’ seemed to be morecommonly acceptable and thus enabled the discussion of matters relevant to mental health on aninternational level. Overall, the terms ‘depressive episode’ and ‘depression’ seemed to be the mostcomprehensible both nationally and internationally [6].

In the Greek sample, early diagnosis of depression was associated with greater unemployment and worsesocio-economic status in adulthood, whilst later diagnosis seemed to be associated with better outcomesat least in terms of service user unemployment. Furthermore, the majority of Greek participants with adiagnosis of depressive episode were single with no children, despite the fact that they had alsocompleted a higher educational level. Taken together, these �ndings seem to re�ect the debilitatingimpact of depression on aspects such as relationships, social and professional life despite the fact that itseems to be less debilitating in terms of cognition and functionality, compared to other diagnosticcategories, as indicated by the higher educational level achieved by service users with this diagnosis.

With regards to the understandability of speci�c criteria for ‘depressive episode’ in the Greek sample, thehighest level of understanding was reported for the phrases “depressed mood” and “hopelessness aboutthe future,” with all participants reporting that they fully understand all terms/phrases. The constituentroot ‘to depress’, although clearly understood, seems to evoke negative associations with mental illness,negative thoughts, experiences and memories among service users; these were the primary reasons forthe proposal for rephrasing of the term both internationally and nationally. Equally, the term‘hopelessness about the future’ seemed to resonate a lot with the Greek sample and was fully understoodby all participants with over 90% reporting that it matched a current or past experience; this seemssigni�cant compared to the average international rate of 75,2% whilst similarly high rates were recordedin Mexico [6]. It is worth considering whether the recent experience of the economic crisis in Greece andthe generalized use of the term depression by the media to describe public mental health, may havecontributed to the increased resonance that the term ‘hopelessness about the future’ has, not onlyamongst Greek participants but perhaps in other countries experiencing �nancial and social adversity.Thus, only 26,7% of Greek participants chose a rephrase for the term ‘hopelessness about the future’compared to the international average of 36,7% despite the increased negative associations the termevokes in the Greek sample (93,3% versus 86% internationally).

Similarly, the term ‘signi�cantly disrupted sleep or excessive sleep’ was understood at a rate of 93,3% inthe Greek sample, which was one of the highest internationally. Sixty percent of Greek participants (thehighest rate internationally) suggested a rephrasing of the term compared to only 18,9% at aninternational level with almost 14% of Greek service users stating that the term ‘signi�cantly disruptedsleep or excessive sleep’ does not re�ect their subjective experience. It appears that for Greek participants,the term ‘signi�cantly disrupted sleep or excessive sleep’ does not adequately capture a diagnostic

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criterion for depressive episode, possibly due to culturally idiosyncratic characteristics with regard tonormative sleeping behaviour and lifestyle. Finally, the term ‘psychomotor agitation or retardation’seemed to be the least understood diagnostic criterion, with 40% of the sample not understanding theterm. The average national Greek comprehension of 66% was higher than international levels, with 60%of the Greek sample suggesting a rephrasing of the term, compared to only 38,9% of the internationalsample. Indicatively, one participant noted that they couldn’t understand the word “psychomotor”completely, and added that “…it sounds like diagnoses that are used by specialists in the �eld… we usethe words ‘agitation’ and ‘retardation’… I don’t know if the meaning is something different, retardation isthe opposite of agitation”. The term seems to evoke negative associations for Greek participants at agreater extent than the international average, whilst interestingly participants with children seemed tobetter understand the term. Perhaps the experience of having children and the physical challenges thatparenthood entails enables participants to better understand the term ‘psychomotor agitation orretardation’ and to perceive it as closer matching their experience.

Lastly, for ‘depressive episode’ the diagnostic criteria of ‘beliefs of low self-worth or excessive orinappropriate guilt that may be manifestly delusional’ was highly understood by Greek participants at91,7%, which was higher that the international average. The national rates for rephrasing of the term werealso higher than the international average at 46,7% versus 41,9% respectively [6]. Equally, 86,7% of Greekparticipants reported understanding the term ‘recurrent thoughts of death, recurrent suicidal ideation orevidence of attempted suicide’, which was lower than the international average; Greek service users wereamongst the highest internationally (with only France noting higher rates for rephrasing) that reportedpreferring a rephrasing of the term. Indeed, issues such as guilt and suicide may still represent taboosubjects for countries such as Greece, where religious beliefs dominate and possibly further stigmatizeaspects of depression such as suicidal ideation.

While this study has reached some valuable conclusions, the small sample size of the participants doesnot make it possible to generalize the �ndings. Additionally, the participants of this study were recruitedfrom the same setting in the capital of Greece, thus possibly impacting the sociocultural variability inresponses. Future studies should include more participants from a variety of settings to make moresound comparisons with national and international results. Bearing those limitations in mind, thereporting and discussion of the empirical results was carried out with caution, mainly aiming to presentthe �ndings and initiate a dialogue on the understandability of the terms for the diagnosis of “depressiveepisode” on a national level.

5. ConclusionThere is a growing need for a fundamental reform in the conceptualization and generation of psychiatricknowledge and its implementation in psychiatric training that acknowledges the notion of relational careand the interface between psychological and social well being [8, 9]. Recent developments concerning thedemocratization of psychiatric language suggest that medical and experiential knowledge is adjusted todifferent semantic and cultural contexts, with the view to making classi�cation and diagnoses accessible,

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non- stigmatizing and inclusive. In that respect, psychiatric theory and practice needs to constitute a�exible, ever- growing construct, capable of accommodating and integrating new scienti�c evidence intoits epistemological and methodological value base [8].

DeclarationsCompeting Interests

The authors have no relevant �nancial or non-�nancial interests to disclose.

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