Harmonizing allergy and hypersensitivity nomenclature and definitions
As demonstrated in Figure 2, we observed a similar pattern of responses relating to the accuracy evaluation of the new ICD-11 Allergic and hypersensitivity conditions classification. All of the sections had the score 3 (good accuracy) selected by the majority of respondents.
The nomenclature and definitions of “allergic rhinitis”, “allergic asthma” and “anaphylaxis” received the best scores (3 and/or 4). On the other hand, in contrast with other sections, “Dermatitis or eczema”, “non-allergic asthma” and the “Allergic or hypersensitivity reactions to arthropods” subsection presented higher proportion of scores 1 and 2 (Figure 2). We received 49 responses to open questions with suggestions covering missing conditions (e.g ., primary immunodeficiency), inclusion of underlying mechanism or causes and requests for simplification of the section.
LESSONS FROM THE ENGAGEMENT PROCESS
The implementation phase of ICD-11 is currently ongoing. The main framework of the new classification was presented to the WHA in May 2019 (41). Refinements of ICD-11 are led by the ICD-11 governance team and supported by the WHO-FIC networks comprising the reference groups and advisory committees of WHO. The Montpellier WHO CC CSS plays a special role in supporting the WHO through its academic and research projects. The data provided by these initiatives will be essential for fine-tuning improvements in the Allergic and hypersensitivity conditionssection of ICD. In fact, this section has been serving as a model for the refinement process, since it is the first time that many of these conditions have been represented together in a single location by means of the polyhierarchical design of ICD-11. Considering the fact that every change to the existing framework can have consequences not only for the allergy specialty but also for other specialties, all modifications have to be carefully and deeply considered and agreed with the concerned parts. Input mechanisms required demonstrated scientific evidence and consensus across all ICD stakeholders.
The outcomes of this engagement process have provided a snapshot view of how the international classifications are currently being used and of how we will be able to work together with WHO to assist adoption of the new A/H classification. For instance, those countries in which no classification system is used are being targeted for early adoption of ICD-11, and other countries using ICD-9 (or national adaptations) will be able to transfer directly to ICD-11.
In this survey, we decided to include only the main terms and definitions in the new A/H classification in order to simplify the task for our respondents and in the hope of thereby obtaining a higher response rate. For this reason many of the 49 responses to the open question of the survey were related to entities not mentioned in the proposed survey. However, all the comments have been taken into account, considering that ICD-11 is not intended to be a specialty classification but a system for use by a broad range of end-users.
Appropriate usage of codes for recording disorders is a key issue to prevent misclassification. The results of the current survey underline the need for increasing awareness of ICD-11 and its coding procedures as well as for educational programs to support ICD-11 end-users. These are two further goals of the Montpellier WHO CC.
Over recent decades the allergy community has been concerned to improve terminology and definitions in the field of allergy, as evidenced in many documents which have been published to date (44-74). The harmonization of A/H terminology and definitions is critical for our community in today’s globalized world with its international multicentre clinical trials and with the development of “personalized medicine”. All the main published international consensuses and guidelines in the field of A/H have been considered in the drafting of the ICD-11Allergic and hypersensitivity conditions classification in the ICD-11 chapter. The ICD-11 is recognized by the allergy community as the main official means to reach global harmonization in nomenclature and definitions to support the allergy community in the years to come. The allergy community recognizes the ICD-11 as a clinical tool and classification, in strong contrast to ICD-10 that designed for statistics only. This is an important finding of the survey which you should also highlight. Meanwhile, immunological disorders have been updated under the same chapter, including for example immunodeficiencies and rare diseases.
Many quality measures, such as those from US HealthGrades and the Agency for Healthcare Research and Quality, rely on the WHO ICD codes. Improving the specification of conditions will help clarify the connection between a provider’s performance and the patient’s condition. Accurate and updated diagnostic and procedure codes will improve data on the outcomes, efficacy, and costs of new medical technology and will facilitate fair reimbursement policies. It will help payers and providers to identify patients in need of disease management more easily and will more effectively tailor disease management programs (27).
By allowing all the relevant diagnostic terms for allergic and hypersensitivity conditions to be included in ICD-11, WHO has recognized their importance not only to clinicians but also to public health and those involved in studying and managing it, including epidemiologists, statisticians, health care planners and other stakeholders. Importantly, the new classification will enable the collection of more accurate epidemiological data to support quality management of patients with allergies and to better facilitate health care planning and decision-making, including public health measures to prevent and reduce the mortality and morbidity attributable to A/H. The improved ontological structure of ICD-11 and standardized terminology and definitions throughout the ICD-11 will also facilitate international comparisons of quality care and the sharing of best practice globally.
An important limitation of the survey is the differential response rate by regional area. We consider, however, that it is the quality of responses received rather than their quantity or their geographical representativeness that is most important. Although this did not affect our overall data analysis, it may highlight the need for allergy specialty development in the areas where the number of responders was low. Despite the specific response rate, the survey represented a unique opportunity to give voice to colleagues from 74 countries. In some countries, notably China, the most populous nation in the world, we received fewer responses than might have been expected. We hypothesise that recipients may not have been able to access the survey due to national regulations prohibiting Google® accounts. Other factors which may have influenced the response rate include the high number of questions for busy doctors and health professionals to answer, difficulty in accessing the online questionnaire and difficulties with the English language. Also it was not possible to have the initial sample size parameter since the survey has been disseminated by e-mail, social media and through national or regional allergy academies.
We believe that, in addition to helping during the implementation phase of the new ICD-11 “Allergic and hypersensitivity conditions” classification, all the comments provided will help to improve the A/H classification and to increase awareness by different disciplines of what actions are needed to ensure more accurate epidemiological data and better clinical management of patients with allergic and hypersensitivity disorders. The efforts presented in this manuscript are aligned to additional ongoing national and international actions in order to ensure quality of allergy and hypersensitivity conditions data in the forthcoming years.
ABREVIATIONS
A/H: allergic and hypersensitivity conditions
AAAAI: American Academy of Allergy Asthma and Immunology
ACAAI: American College of Allergy Asthma and Immunology
AFRO: primarily sub-Saharan Africa
APAAACI: Asia Pacific Association of Allergy, Asthma and Clinical Immunology
EAACI: European Academy of Allergy and Clinical Immunology
EMRO: Eastern Mediterranean/North Africa
EURO: Europe
ICD: International Classification of Diseases
MMS: Mortality and morbidity statistics
PAHO: the Americas
SEARO: Southeast Asia
SLAAI: Latin American Society of Allergy, Asthma and Immunology
WAO: World Allergy Organization
WHA: World Heal Assembly
WHO: World Health Organization
WHO-FIC: World Health Organization - Family of International Classifications
WHO CC: World Health Organization Collaborating Centre
WPRO: Western Pacific
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FUNDING:
Pascal Demoly and Luciana Kase Tanno received an unrestricted Novartis and MEDA/Mylan Pharma grants through CHUM administration. LKT received a research AllerGOS grant.
CONFLICT OF INTERESTS:
The authors declare that they do not have conflict of interests related to the contents of this article.
CONTRIBUTIONS:
The first and last authors contributed to the construction of the document (designed the study, including the questionnaire, analysed and interpreted the data, and wrote the manuscript). All the authors critically revised and approved the final version of the manuscript and agree to be accountable for all the aspects of the work.
AKNOWLEDGEMENTS:
We are grateful to all the representatives of the ICD-11 revision with whom we have been carrying on fruitful discussions, helping us to tune the here presented classification: Robert Jakob, Linda Best, Nenad Kostanjsek, Linda Moskal, Robert J G Chalmers, Jeffrey Linzer, Linda Edwards, Ségolène Ayme, Bertrand Bellet, Rodney Franklin, Matthew Helbert, August Colenbrander, Satoshi Kashii, Paulo E. C. Dantas, Christine Graham, Ashley Behrens, Julie Rust, Megan Cumerlato, Tsutomu Suzuki, Mitsuko Kondo, Hajime Takizawa, Nobuoki Kohno, Soichiro Miura, Nan Tajima and Toshio Ogawa.
We would like to thank very much the national and international academies, and colleagues who supported the dissemination of the online survey. We are grateful for the participants for their responses.
LIST OF TABLES
Table 1: Responder to the international survey, response rates, demographic characteristics, and classification in use
Table 2: Responses to open ended questions from a web international survey fielded in 2019: what is expected by a classification system and what the ICD-11 is able to bring