ICF Core Set for Osteoporosis
Clinically, osteoporosis is recognized by the occurrence of fractures, considering hip fractures as the most serious outcome. The number of hip fractures is increasing throughout the world, and the projected number for 2050 is 6.3 million worldwide. Osteoporosis and associated fractures have therefore become a major public health concern, not only in Western Europe and North America but globally. Based on the health domains covered by available generic health-status measures and a qualitative review of the literature, a number of health domains of importance in patients with osteoporosis have been suggested in the 2003 World Health Organisation (WHO) Technical Report on the burden of musculoskeletal conditions. With the ICF it is now possible to define the typical spectrum of problems in functioning of patients with osteoporosis under consideration of environmental factors in a more systematic way using a globally agreed-upon language.
To do this, the ICF Research Branch and the WHO with the scientific support of Ludwig-Maximilian University (Germany), Jefferson Medical College of Thomas Jefferson University (USA), AarReha Schinznach (Switzerland), Royal Cornwall Hospital (UK), University of Texas Health Science Center at San Antonio (USA), Bone and Joint Decade and the European League against Rheumatism (EULAR), initiated a project to develop internationally-accepted and evidence-based ICF Core Sets for osteoporosis. This project was part of a larger project examining 12 chronic conditions with a high burden of disease.
The preparatory phase included a systematic literature review, a Delphi exercise and an empirical data collection using the ICF checklist:
- The systematic literature review was performed to identify and compare the concepts contained in outcome measures of randomized, controlled clinical trials published from 1991-2000 involving patients with osteoporosis.
- The international expert survey (via email) using the Delphi technique was conducted with 21 health professionals, experts on the treatment of persons with osteoporosis, to identify the set of domains that best describe the prototypical spectrum of problems in functioning and health in persons with osteoporosis from the of health professional perspective.
- The multicentre cross-sectional study using the ICF checklist with a convenient sample of 32 patients undergoing inpatient or outpatient rehabilitation was performed to identify the common problems experienced by persons with osteoporosis.
An international ICF consensus conference took place from 26–29 April 2002 at a quiet monastery situated in a pleasant landscape far from any city and distractions. The aim of the conference was to establish the Comprehensive and Brief ICF Core Sets for patients with osteoporosis. Fifteen experts from 7 different countries decided which ICF categories are to be included in the ICF Core Sets for osteoporosis following a formal, decision-making and consensus process which integrated the results from the 3 preparatory studies.
69 ICF categories were selected for inclusion in the Comprehensive ICF Core for osteoporosis. These categories can be taken into account when conducting a comprehensive, multidisciplinary assessment. Out of the 69 Comprehensive ICF Core Set categories, 22 ICF categories were selected as categories for the Brief ICF Core for osteoporosis. The Brief ICF Core Set can be used in assessing patients participating in a clinical study on osteoporosis.
Validation studies have been conducted.