With a current worldwide prevalence of 1% Autism Spectrum Disorder (ASD) refers to a group of conditions that are characterized by impairments of reciprocal social interaction, verbal and non-verbal communication, as well as a preference for repetitive, stereotyped activities, behaviors and interests. The age of onset is always prior to 36 months and the symptoms persist throughout the lifespan. These features are associated with alternations in cognitive and emotional functioning, high rates of psychiatric co-morbidity, relationship problems, poor adaptive skills and lower reported quality of life. To capture this complex melange of functioning experiences beyond the diagnosis, the ICF offers a tool to describe the lived experience of a person with ASD in a comprehensive and standardized way.
To make the ICF, a classification of 1424 categories, more practical for use in clinical practice, ICF Core Sets i.e. shortlists of ICF categories selected as most relevant for specific health conditions, have been developed. Karolinska Institute and the ICF Research Branch in collaboration with an international, multiprofessional Steering Committee have taken on the challenge to develop ICF Core Sets that can be used in the assessment and follow-up of persons with ASD. The project team has decided to use the ICF version for children and youth (ICF-CY) for the study. The ICF-CY not only includes all of the categories of the reference classification ICF, it also captures the particular characteristics of the developing child.
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Attention Deficit Hyperacitivity Disorder (ADHD) is a neurodevelopmental disorder that is generally defined by inattention, hyperactivity and impulsivity. The prevalence of ADHD is estimated to be 5.3 % worldwide. It is associated with specific learning disordes, school drop-out, low self-esteem, depression, anxiety, behaviour problems, substance abuse and undeemployment. ADHD can diversely influence a person's functioning. Getting a comprehensive profile of a person's functioning goes beyond the diagnosis. Complementary to the global rating of psychological and functional problems provided by currently used multiaxial classifications such as the International Classification of Diseases (ICD) and Diagnostic and Statistical Manual of Mental Disorders (DSM) IV-TR and V, the ICF would allow for a comprehensive and standardized assessment (also considering environmental and personal factors) of the functioning of an individual with ADHD across the lifespan.
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In January 2012, the Lighthouse Project Hand started as a cooperation project between the Department of Hand Surgery, Plastic- and Microsurgery, Trauma Hospital Hamburg (Germany) and the Research Unit for Biopsychosocial Health at the Department of Medical Informatics, Biometry and Epidemiology - IBE, Ludwig-Maximilian University (LMU) Munich (Germany). The aim of the project is to operationalize, implement and use the ICF Core Sets for hand conditions as a monitoring tool in the treatment and rehabilitation of persons with hand conditions along the continuum of care in the institutions of the statutory accident insurance in Germany.
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The ICF Core Set development project for hand conditions was a cooperative effort between the German Social Accident Insurance (DGUV), the Institution for Statutory Accident Insurance and Prevention in the Health and Welfare Services (BGW) (Germany) and the ICF Research Branch. The aim of the project was the development of ICF Core Sets to comprehensively describe functioning and disability of individuals with hand conditions i.e. conditions/health problems located directly at the hand e.g. carpal, tunnel syndrome or injuries of the hand or osteoarthritis of finger joints or amputations or Dupuytren's disease, etc. and conditions/health problems originating external to the hand but affecting the hand e.g. rheumatoid arthritis, stroke, Parkinson's disease or multiple sclerosis, etc. It is envisioned that these ICF Core Sets will stimulate further research as well as form the basis for studying the content validity of already existing instruments or for the development of new instruments to quantify the severity of hand, to measure change over time and the effectiveness of interventions.
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Vertigo is frequently described as a consequence or side effect of defined entities such as cardiovascular, infectious, neurological and otological disease. Nevertheless, vertigo and dizziness are also discrete syndromes which are associated with co-morbidities. A major challenge is that nomenclature in vestibular research lacks uniform criteria for its classification and definition. Thus, "vertigo and dizziness" includes vertigo and dizziness as consequences of disease as well as disease entities such as benign paroxysmal positional vertigo (BPPV), phobic postural vertigo, central vestibular vertigo, psychogenic vertigo, Menière's disease, ocular motor disorders, and vestibular migraine. Vertigo is potentially disabling and has distinct impact on participation, psychosocial interaction and quality of life. However, data on health care costs and on burden of disease specific to vertiginous disease is scarce. Also, there is no consensus on which measures are the most appropriate, which aspects should be monitored, or which aspects are the most relevant to the patient. Also, existing measures have not been compared systematically as regarding their content validity.
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In 2005 the WHO estimated that globally 278 million people have a permanent hearing loss of more than 40 dB HL (WHO, 2006). Including milder losses of greater than 25 dB HL, this number increases to an estimated 642 million. The total number is expected to rise in the coming years. Hearing loss, usually assessed by psycho-acoustic measurements such as pure tone and speech audiometry, only provide a limited description of the consequences of hearing loss; there is ample evidence showing that hearing loss has significant negative effects on a person's health status more generally, varying from individual to individual and over time in a given individual. There is currently no single questionnaire in audiology that covers the broad perspective that the ICF represents nor a consensus on the most appropriate instrument that assesses the effects of hearing loss on the lives of adults as well as treatment outcomes. Initiated by the Nordic Audiological Society (NAS), the ICF Research Branch, the Classification, Terminology and Standards Team at WHO, the International Society for Physical and Rehabilitation Medicine (ISPRM), the International Federation of Hard of Hearing People, the International Society of Audiology, and the Swedish Institute for Disability Research (SIDR) teamed up to tackle this issue by developing the first version of the ICF Core Sets for hearing loss. The project was run under the leadership of SIDR and with the financial support of the Oticon Foundation.
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About 1.4 million persons in the United States and 2.2 million persons in Europe may suffer from inflammatory bowel diseases (IBD). No curative treatment is currently available for this lifelong and complex disorder, and IBD is known to influence physical, psychological, familial, and social dimensions of life. Thus, understanding IBD, its accompanying health issues and most importantly its impact on people with IBD is of upmost importance. The objective of the ICF Core Set development project for persons with IBD was to identify relevant categories which comprehensively describe the functioning of persons with IBD. The project was a collaborative effort between the ICF Research Branch, the IPNIC group (International Program to develop New Indexes for Crohn's Disease), the International Society of Physical Rehabilitation Medicine (ISPRM) and the International Organization on Inflammatory Bowel Disease (IOIBD).
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There are a number of instruments commonly used to determine the presence and severity of sleepiness or assess specific symptoms. For defined sleep disorders there are several well-validated condition-specific instruments in use, whereas for other sleep disorders there is a lack of widely accepted condition-specific instruments. All existing instruments typically cover only selected aspects of the whole-patient experience associated with sleep disorders. It would, therefore, be valuable for clinical practice and research to have a practical tool that covers the spectrum of symptoms and limitations in the functioning of all patients with sleep disorders, taking into account also the environments in which they live. To tackle this challenge, the ICF Research Branch, the World Health Organisation (WHO) and the World Association of Sleep Medicine (WASM) initiated a project to develop internationally-accepted, evidence-based, reliable, and valid ICF Core Sets for sleep.
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Amputation refers to the surgical or spontaneous partial or complete removal of a limb or projecting body part covered by skin. The incidence and prevalence of amputation worldwide is difficult to determine precisely. Peripheral vascular disease, either primary or secondary to diabetes, is the most common cause for amputation in the industrialized countries. Non-industrialized countries generally have a higher incidence due to a higher rate of war, trauma and less developed medical systems etc. Trauma is the most common cause in the non-industrialised countries. The number of international as well as internal disputes and the continued use of landmines as well as the increased use of motorised transportation has resulted in a significant increase in the incidence of traumatic amputations worldwide. The predicted continued high levels of conflict worldwide will result in an increasing prevalence of persons with an amputation, equating to an increase in the number of persons with chronic disabling conditions. A wide range of instruments is used by researchers and clinicians to measure health, psychological and social functioning, well-being and life satisfaction of persons with amputation. However, there is currently no consensus regarding the most appropriate measure or measures in this field, and not all available outcome measures have adequate evidence and statistical estimates of validity and reliability. Furthermore, the outcome measures used were unable to comprehensively capture the full picture of functioning and activity limitations of persons who have undergone an amputation. To tackle this issue, Prof. Friedbert Kohler from Sydney South West Area Health Service/Western Zone and Braeside Hospital (Australia), the ICF Research Branch, World Health Organisation (WHO), the International Society for Prosthetics and Orthotics, and numerous other interested clinicians, initiated the ICF Core Set development project for persons following an amputation.
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