Development of ICF Core Sets for Sleep

Background
The International Classification of Functioning, Disability and Health (ICF) offers a framework for a comprehensive understanding of the components of health. The ICF is based on the bio-psycho-social model covering functioning and disability with its components Body Structures and Functions, Activities and Participation as well as Personal and Environmental Factors.
The ICF is intended for use in multiple sectors that include, besides health, education, insurance, labor, health and disability policy, and statistics. All member states of the World Health Assembly are called upon to implement it in all these fields. However, since the ICF is a very comprehensive classification with more than 1400 so-called ICF categories, it has to be tailored to suit these specific applications.
In the clinical context, ICF Core Sets are being developed to make the ICF classification practical for clinical encounters.

Objective
The objective of the project is to develop lists of ICF categories specific for persons with sleep disorders with the goal of specifying what is relevant to study and report for persons sleep disorders. This is happening through an open consensus process in cooperation with the WHO and partner institutions across the world.
The development process of the ICF Core Sets for persons with sleep disorders has already been initiated (please visit:http://www.paranet.ch/sw39430.asp)

Methods
The project consist of four world-wide studies and an ICF Core Set Consensus Conference. ICF categories relevant for sleep are identified by means of a) a systematic literature review regarding the outcomes used in clinical trials and selected observational studies, b) focus groups/individual interviews involving patients in different world regions, c) an expert survey with involvement of international clinical experts in the field and d) a cross-sectional study involving patients in different world regions.
Consensus about areas that have to be part of a comprehensive and of a brief ICF Core Set for sleep will be reached in a final ICF Core Sets Consensus Conference in Siuntio, Finland in May 2008. Subsequent field testing will be necessary to validate these first versions of ICF Core Sets.

Importance
ICF Core Sets are useful standards for research, clinical practice and teaching. They are useful for the description of patient's problems, resources and needs, the assignment to professional interventions and the evaluation of treatment outcome. They facilitate the multi- and interdisciplinary team work. Finally, they may be used for the prediction of resource utilization and the development of reimbursement algorithms.

Actual Status
The protocol paper of the project "Developing ICF Core Sets for persons with sleep disorders based on the International Classification of Functioning, Disability and Health" and the "Content comparison of health-related quality of life instruments for obstructive sleep apnea" have been preliminarily published online in July 2007 in a special section of the international journal Sleep Medicine called "World Health Organisation (WHO) - World Association of Sleep Medicine (WASM) Recommendations"

The expert survey
From the overall pool of 380 that gave a positive response to either the first contact/reminder/final call reminder to the initial pool of approx. 2700 experts contacted from all the WHO regions and the disciplines involved in Sleep Medicine care 176 Experts were selected. The 176 questionnaires were sent out on the 24th of April 2007 and the deadline for the final call reminder was the end of October 2007 . All in all 123 completed questionnaires have been returned. The data collection has consequently been terminated and all the meaningful concepts within the answers of the experts have been extracted. The linking of these meaningful concepts to the categories of the ICF will start in January 2008.

Systematic literature review
A literature review that prepares the literature review of the preparatory phase of the project has been conducted. The aim of this literature review is to study what sleep-related variables have been investigated in the field of spinal cord injury.
a) A highly sensitive search in medline, embase, psychinfo databases has been performed, resulting in the identification of 23 relevant papers recording on the occurrence of sleep disorders or sleep interferences in SCI study populations.
b) A poster presentation of the results took place with great success under the theme of 'Sleep in Medical Disorders' at the 5th world sleep congress of the WFSRSMS (World Federation of Sleep Research and Sleep Medicine Societies), on Sept 2-6, 2007 in Cairns, Australia. Due to the interest of the editor Colin Shapiro the paper will be published in the Journal of Psychosomatic Research. The authors are: F. Gradinger, C. Boldt, S. Geyh, A. Stucki, A. Dahlberg, M. Partinen, F. Michel

Empirical studies
The two empirical studies (qualitative study with focus groups / empirical-quantitative study with individual interviews using the extended ICF-checklist) of the preparatory phase are planned to begin in January 2008. In order to identify the extension categories to the ICF-checklist a systematic review and a linking process is currently ongoing. In this process 104 distinct sleep questionnaires have so far been identified through reviews and international guidelines in sleep medicine practice and research. The main study centers for conducting the interviews will be the sleep centers of the University Hospital in Zurich (Claudio Bassetti, Ramin Khatami) and the Insel-University Hospital in Berne (Matthias Gugger, Johannes Mathis). The protocols and case record forms are currently being revised by the respective ethics committees. Additional study centers can participate in the studies of the preparatory phase. However, it is important to emphasize that no funding is available to support the data collection.

Presentations:

2nd Congress of WASM in Bangkok, Thailand 4-8 February 2007
"WHO - ICF Symposium. Development of ICF Core Sets for Sleep", Stucki A, Stucki G, Cieza A

For further information, please contact :Felix Gradinger