A thorough investigation is being conducted by non-profit groups and international institutions in order to create specialized ICF Core Sets for deafblindness.
Deafblind Internation is conducting an international study under the direction of the European Deafblind Network that aims to standardize the description of functioning for the diverse range of hearing and vision loss combinations that result in deafblindness, regardless of the underlying medical condition or degree of personal autonomy of the deafblind. This would give a rationale for using science in functional status evaluation, goal-setting, treatment planning, tracking progress, and outcome evaluation.
In addition to its primary goal, the project wants to help the medical professions around the world become more aware of deafblindness.
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.
Despite the fact that Deafblindness is one of the most incapacitating medical disorders, it is also one of the least frequently diagnosed.
A person who may be both deaf and blind typically undergoes a protracted clinical evaluation that is typically conducted in two consecutive steps: one for the sight loss and one for the hearing loss. There is no specific medical scale designed to combine the two inputs.
Deafblind people must therefore be certified using non-standard indicators that produce subjective or imprecise results that have a significant impact on the subsequent intervention and assistance strategy.
1. EMS, or empirical multicenter study. using the ICF checklist to identify the issues that the target population of people encounters most frequently.
2. A systematic review of the literature (SLR). a summary of the relevant international scientific literature on the specific health condition, collection of health conditions, or healthcare setting.
QS, or qualitative study. reflects the viewpoint of those who are Deaf or Blind. The congenital ones by their parents, the acquired ones by themselves.
Expert survey (ES), number 4. A survey conducted online sought the opinions of specialists on many areas of functioning and external variables that are important to people who are Deafblind. The Delphi method may also be used.
ICF Core Sets
A universal framework for comprehending and describing functioning and disability is the International Classification of Functioning, Disability, and Health (ICF) developed by the World Health Organization (WHO). ICF Core Sets, a procedure for creating core sets of ICF categories, were developed by WHO and the ICF Research Branch to increase the ICF’s applicability for everyday use. By offering a list of fundamental categories pertinent to certain medical conditions and healthcare environments, ICF Core Sets make it easier to describe functioning, for instance in clinical practice. These ICF categories were chosen from the complete ICF as part of a scientific procedure based on preliminary research and input from a broad team of specialists.
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.