International Classification of Functioning, Disability and Health Core Set construction in systemic sclerosis and other rheumatic diseases: a EUSTAR initiative.
OBJECTIVE
To outline rationale and potential strategies for rheumatology experts to be able to develop disease-specific Core Sets under the framework of the International Classification of Functioning, Disability and Health (ICF). ICF is a universal framework introduced by the World Health Organization (WHO) to describe and quantify the impact and burden on functioning of health conditions associated with impairment/disability.


METHODS
A combined effort of the EULAR Scleroderma Clinical Trial and Research and the ICF Research Branch was initiated to develop an ICF language for scleroderma. From our Medline literature review, using the abbreviation and spelled out version of ICF, we assembled approaches and methodological reasoning for steps of core set development.


RESULTS
The ICF can be used for patient care and policy-making, as well as the provision of resources, services and funding. The ICF is used on institutional, regional, national and global levels. Several diseases now have ICF Core Sets. Patients with complex rheumatologic diseases will benefit from a disease-specific ICF Core Set and should be included in all stages of development. ICF Core Set development for rheumatic diseases can be conducted from a number of feasible strategies.


CONCLUSIONS
This overview should help to clarify useful processes leading to development of an ICF Core Set, and also provide a platform for expert groups considering such an endeavour.
Department of Medicine, Louisiana State University Health Sciences Center, Scleroderma and Sarcoidosis Patient Care and Research Center, Section of Rheumatology, New Orleans, LA 70112, USA. ctd.ild@gmail.com
Lesley Ann
LA
Saketkoo
Reuben
R
Escorpizo
Kevin J
KJ
Keen
Kim
K
Fligelstone
Oliver
O
Distler
D004185:Disability Evaluation; D006801:Humans; D038801:International Classification of Diseases / Q000458:organization & administration; D012216:Rheumatic Diseases / Q000145:classification* / Q000503:physiopathology; D012595:Scleroderma, Systemic / Q000145:classification* / Q000503:physiopathology; D012720:Severity of Illness Index