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Validation
of the Comprehensive ICF Core Sets from the Patient
Perspective
Michaela Coenen (Munich, Germany)
One essential key aspect within the process of the validation
of ICF Core Sets is the patient perspective. While the
patient perspective has been included implicitly in
the ICF (e.g. limitations of activities, restriction
of participation, personal factors), the patients are
now explicitly involved in the process of the validation
of ICF Core Sets. As standards of functioning and health
in research and clinical practice, the ICF Core Sets
should address the perspective of those who experience
the disease.
Qualitative methodology provides the possibility to
explore the perspective of those who experience a health
problem, i.e. the so called patient perspective. To
validate the ICF Core Sets two of the most broadly used
methods in qualitative research - focus groups and individual
interviews - are used. The objectives of patient focus
groups or individual interviews are (a) to explore and
understand the perspective of individuals with a specific
health condition on functioning and health using a qualitative
approach and (b) to identify concepts of functioning
and health important to these patients using the ICF
as a reference.
The Comprehensive ICF Core Set for rheumatoid arthritis
(RA) was the first undergo validation from the patient
perspective using focus groups* and individual interviews.
Individual interviews with 21 patients with RA were
performed in Vienna (Austria) and focus groups with
49 patients were performed in Munich (Germany). Transcribed
data were analyzed according to the qualitative method
of 'meaning condensation' which allows identifying 'meaning
units' in the transcripts. Each 'meaning unit' was then
linked to the most specific ICF category according to
established linking rules. Both studies are completed.
Using the validation of Comprehensive ICF Core Set for
RA as a case in point a protocol was developed to validate
ICF Core Sets from the patient perspective to be used
for different health conditions and in different countries.
In the meantime several researchers have started the
process of validating ICF Core Sets for different health
conditions using the protocol (see table). For the studies
in foreign countries listed below the open-ended questions
were translated according to a standardized translation
procedure.
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