Conception of an ICF Core Set for Systemic Sclerosis (SCISCIF)

Assistance Publique - Hôpitaux de Paris

Status: Completed

Conditions: Systemic Sclerosis

Study type: Observational

Funder types: Other

Identifiers

NCT01848418

AOR - 10050

Details and patient eligibility

About

The purpose of this study is to create and validate an ICF core Set for Systemic sclerosis

Full description

In 2002 was published WHO's International Classification of Functioning, Disability and Health (ICF). ICF defines disability as "the negative aspects of the interaction between an individual (with a health condition) and that individual's contextual factors (personal and environmental factors)". Interactions are specified in five domains, classified from body, individual and societal perspectives by means of two lists: a list of body functions and structure, and a list of domains of activity and participation. Since an individual's functioning and disability occurs in a context, the ICF also includes a list of environmental factors.

ICF core sets, which are short lists of ICF categories relevant for specific conditions, serve as practical tools for clinical practice and allow standardisation of data for health information and research. Core sets have already been developed and validated for several musculoskeletal diseases, such as low back pain, osteoarthritis, or osteoporosis, but not yet for systemic sclerosis.

Enrollment: 113 patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Male or female aged 18 and older
• Diagnosis of ScS made according to ACR and/or Leroy et Medsger criteria
• Patient giving his informed consent to participate in the study

Exclusion criteria

• Severe chronic disease associated with ScS : stroke, multiple sclerosis, Parkinson's disease,…
• Cognitive or behavioral disorders making assessment impossible
• Inability to speak and write French