International universities and non-profit organizations are carrying out a broad study that will develop a specific ICF Core Sets for deafblindness

Deafblind International is carrying out an international study, led by the European Deafblind Network, that wants to provide a standardized description of functioning for the wide range of combinations of hearing and sight loss causing Deafblindness, independently of the medical cause or level of personal autonomy of the deafblind. This would provide a scientific basis for the assessment of functional status, goal setting, treatment planning and monitoring of the evolutions, as well as measurement of the outcome. Besides this main objective, the project also aims to contribute to raise awareness on Deafblindness inside the medical community worldwide.
The few data available estimates that only in the EU there could be as many as 3 million deafblind people in Europe, according to Deafblindindicators.eu, a project developed by the European Deafblind Network. Although this condition is highly incapacitating, Deafblindness is one of the most infra-diagnosed conditions in the medical practice. Normally, a person who is potentially deaf and blind, goes through a long process of clinical evaluation commonly executed in two separate processes: one for the sight loss, and one for the hearing loss, not having any medical scale intended to put together both inputs. As a consequence, deafblind people have to be certified following non-standard indicators generating subjective or incomplete results with a huge impact in the further intervention and assistive plan.

In this context, the development of an international standard following the International Classification of Functioning, Disability and Health (ICF), the framework of WHO to measure health and disability on an individual level and population, that this study proposes, seems necessary and convenient. The project counts with 4 themes or working groups:

1. Empirical Multicenter study (EMS). Identification of the most common problems experienced by the target group of individuals by applying the ICF checklist.
2. Systematic Literature Review (SLR). Summarizing the international scientific literature on the particular Health condition, Health condition group or healthcare context.
3. Qualitative Study (QS). Reflects the view of persons living with Deafblindness. The acquired ones by themselves, the congenital by their parents.
4. Expert’s survey (ES). An internet- based study addressed to gather opinions of experts on aspects of functioning and environmental factors that are relevant for persons with Deafblindness. A Delphi study may also be conducted.

The results from this groups will be evaluated by an international consensus conference in parallel with a global DbI conference, also, the results of this conference will be handed to the World Health Organization for their worldwide incorporation to the International Classification of Functioning, Disability and Health. The project is already in development by a team of 20 experts from 18 different countries representing the 6 world regions. On 2021 it will be carried out, simultaneously, the Systematic Literature Review and the Qualitative Study.

Additional information
ICF Core Sets: The World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF) is a common framework to understand and describe functioning and disability. To make the ICF more applicable for everyday use, WHO and the ICF Research Branch created a process for developing core sets of ICF categories or “ICF Core Sets”. ICF Core Sets facilitate the description of functioning, for example in clinical practice, by providing lists of essential categories that are relevant for specific health conditions and health care contexts. These ICF categories are selected from the entire ICF following a scientific process based on preparatory studies and the involvement of a multidisciplinary group of experts.