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Development
of the ICF Core Sets for Ankylosing Spondylitis
Prof.
Désirée van der Heijde and Dr. Annelies Boonen
(Maastricht, The Netherlands)
Ankylosing Spondylitits (AS) is a chronic, rheumatic disorder
that primarily affects the sacroiliac (SI) joints and the
spine. In addition to the spinal manifestations, extra-spinal
co-morbidity, comprising peripheral arthritis and enthesitis
(in 25% of the patients), uveitis (in 40% of the patients),
psoriasis (in 8% of the patients) and inflammatory bowel disease
(in 8% of the patients), add to the burden of the disease.
The effects of pain, reduced mobility and AS-related comorbidity
on functioning are well recognised. Current recommendations
by the Assessment in Ankylosing Spondylitis working group
(ASAS), regarding outcome assessment in AS, include functioning
as a domain of outcome for clinical trials, as well as clinical
record keeping. Several disease-specific instruments to assess
physical functioning are described in the literature and comprise
the Bath Ankylosing Functional Index (BASFI), the Dougados
Functional Index (DFI), the Health Assessment Questionnaire
modified for the spondyloarthropathies (HAQ-S) and the Revised
Leeds Disability Questionnaire (RLDQ). However, these condition-specific
measures typically cover only selected aspects of the whole
patients' experience associated with AS. Therefore, a project
was initiated to develop ICF Core Sets for AS.
This project has been developed in collaboration between the
ICF Research Branch of the WHO Collaborating Center for the
Family of International Classifications at the German Institute
of Medical Documentation and Information (DIMDI) and the Department
of Rheumatology at the University Hospital Maastricht, The
Netherlands, and is led by Prof. Désirée van
der Heijde and Dr. Annelies Boonen of the Department of Rheumatology
at the University Hospital Maastricht, The Netherlands.
Consensus
Conference
From September 5 to 8, 2007, the Sachs Research Institute
in Nottwil Zwitserland hosted nineteen health professionals
with interest and experience in ankylosing spondylitis (AS)
to vote the Large and Brief Core set for this disease.
The
three day conference was a collaborative project of the ICF
research Branch and the ASsement in Ankylosing Spondylitis
working group. Among the 19 participants, 13 were rheumatologists,
3 physiotherapists, one psychologists, one nurse practitioner
and one ergotherapist. Fourteen participants were European,
two ensured the North-American perspective, two the Sout-American
perspective and one the Asian perspective.
Dr.
Alarcos Cieza chaired the conference and introduced each of
the steps in the consensus building process.
Finally,
55 second level categories were selected for the large Core
Set and 19 for the Brief Core Set. In each Core Set, each
ICF component was represented. The next step will be to start
an international validation study.
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