Functioning and disability in persons with epilepsy.

OBJECTIVE: This study aimed to use the International Classification of Functioning, Disability, and Health (ICF) to describe the functioning of people with epilepsy. The main questions we asked were as follows: what are the difficulties that people with epilepsy face on the body level and in daily activities? What are the most relevant environmental factors needed to describe disability in patients with epilepsy? DESIGN: Data collected using the ICF checklist are presented. RESULTS: Forty-nine patients were interviewed. In total, 63 categories, of which 30 were from the component of activities and participation, 18 were from body functions and body structures, and 14 were from environmental factors, were identified. Among body functions, sensation of pain, seeing, and emotional functions were reported most frequently. Among activities and participation, several difficulties were reported, particularly when capacity qualifiers and broad differences between capacity and performance were taken into account. Finally, environmental factor categories were mostly reported as facilitators, particularly those connected with health care. CONCLUSIONS: The description of a profile of functioning and disability can be more comprehensive with the use of the framework of the ICF, which provides a broad picture of functioning. A deeper understanding of functioning can be gained using the ICF conceptualization of disability because it incorporates all relevant aspects of functioning at the levels of the body and the person, as well as the impact of the environment.

Describing functioning, disability, and health with the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke.

OBJECTIVE: The aim of this article was to demonstrate that stroke diagnosis alone does not explain differences and variety in the functioning and disability of patients. We suggest that the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke is a useful, brief, and functional instrument to produce a functioning profile for stroke patients. DESIGN: This article reports the baseline results of a longitudinal study with 111 patients with stroke and their functioning profiles obtained with the International Classification of Functioning, Disability, and Health Brief Core Set for Stroke. RESULTS: Most frequently reported problems in body functions were memory, muscle power functions, and attention functions. Walking activities, speaking, and understanding spoken messages are the main restricted and limited activities. Principal differences between capacity and performance (i.e., the impact of environment in performing the activities) were found in activities of self-care, such as washing oneself or dressing. Immediate family and health professionals are the main facilitators reported by patients. CONCLUSIONS: The International Classification of Functioning, Disability, and Health Brief Core Set for Stroke reports accurately on the main problematic areas of functioning and activities of daily living of people after stroke. It is a brief and useful instrument to use in clinical practice and it can be proposed as a "starting point" to plan interventions and organize services for patients after stroke.

Analysis of general population surveys with regard to comparable estimates of disability and its correlates across selected European surveys.

This article presents a methodology developed by the Multidisciplinary Research on Health and Disability in Europe project researchers for the retrieval of information about disability using the conceptual framework of the International Classification of Functioning, Disability and Health. A comprehensive review and analysis of European surveys was performed and it is presented here briefly. Recommendations and guidelines for future statistical studies and development of disability surveys are provided. The methodology proposed shows the utility and feasibility of the ICF in research.

Multidisciplinary research network on health and disability training on the International Classification of Functioning, Disability and Health, Ethics, and Human Rights.

This article provides a brief description of a training course in International Classification of Functioning (ICF), Disability and Health, Ethics and Human Rights done in the field of the European MURINET project. This course, in its three annual editions, was the product of a joint collaborative work among the Neurological Institute Carlo Besta, the Catholic University, and the National Council of Disability. The training program was formulated to provide knowledge and skills in the field of disability and in the use of ICF. The main result is that a new generation of European researchers was trained. Thanks to this specialized training program, they are now able to conduct and manage research on health and disability, applying the new concept of health and disability based on the ICF biopsychosocial model.

Disability and profiles of functioning of patients with Parkinson's disease described with ICF classification.

The objective of this study was to describe the functional profiles of patients with Parkinson's disease (PD), and the relationships between impairment in body functions, limitations in activities, and environmental factors, using the World Health Organization's International Classification of Functioning, Disability, and Health (ICF). Patients were consecutively enrolled, and the ICF checklist was administered. Two count-based indices were developed: 'extension', containing ICF categories rated with qualifiers 1-4 and 'severity', containing ICF categories rated with qualifiers 3-4. Categories rated with qualifiers 1-4 in at least 50% of patients are described separately. Spearman's correlation analysis was carried out to identify the relationships between impairments in body functions (BF) and body structures, activities and participation, and environmental factors (EF); linear regressions were performed to identify the best predictors of performance indices in activities and participation. A total of 96 patients were enrolled; 34 categories rated with qualifiers 1-4 in at least 50% of patients are reported, and most of them describe impairment in movement-related functions and limitations in mobility and self-care. Performance indices are significantly lower than capacity and significant relationships with both BF impairments and EF are observed. High difficulties in activities and participation performance are connected with both presence of severe BF symptoms and relevant barriers in EF. Both BF and EF play a relevant role in improving functioning of the patients with PD. The connection between EF barriers and severe problems in activities and participation performance suggests the need of fostering participation of patients with PD by promoting facilitators among EFs. Methodologies and tools are needed to couple information on symptoms, on the difficulties in executing activities, and on environmental features.

Adaptive functioning in children in the first six months after surgery for brain tumours.

PURPOSE: To examine the adaptive functioning of children who underwent surgery for brain tumours with a view to analyse the related acute impairments and to describe their short-term outcome. METHOD: We investigated adaptive functioning in 25 children (ranging from 2 to 18 years of age) for 40 days and again 3 and 6 months after they underwent surgery for various brain tumours. The Vineland Adaptive Behaviour Scales (VABS) were used to assess their adaptive functioning, considering the four main domains and all the subdomains. RESULTS: The results remained stable over the follow-up period considered. The domain in which the scores were most severely affected was Daily Living, followed by the Socialisation and Communication domains. Within the Communication domain, the abilities investigated in the Receptive subdomain revealed the worst impairments. Within the Daily Living domain, impairments were most evident in the children's capacity to take care of themselves and handle domestic activities. In the Socialisation domain, Play and Leisure Time, and Interpersonal Relationships were the subdomains most severely impaired. CONCLUSIONS: These findings are relevant because identifying children's adaptive functioning difficulties sooner could help their rehabilitation to be tailored and thus have a positive fallout on their long-term outcome.

Functioning and disability in migraine.

OBJECTIVE: To describe functioning and disability in patients with migraine according to the model endorsed by the International Classification of Functioning Disability and Health (ICF). DESIGN: Adult patients with migraine were consecutively enrolled. The Migraine Disability Assessment score (MIDAS), the ICF checklist and the WHO Disability Assessment Schedule II (WHO-DAS II) were administered in individual sessions. Descriptive analyses were performed to report on MIDAS and WHO-DAS II scores. ICF categories reported as a problem by more than 20% of patients were described in detail. RESULTS: One hundred two patients (mean age 43.5; 85.3% females) were enrolled. Mean MIDAS score was 28.2. WHO-DAS II was 18.7, and the most severe limitations are reported in life activities and in participation to social situations. A total of 61 ICF categories reached the threshold of 20%, 19 Body Functions and Structures, 25 Activities and Participation and 17 Environmental Factors. CONCLUSIONS: We reported information on a broad set of domains, expanding migraine-specific ones, such as pain and lost workdays that were previously reported in other studies. Our results enable to enlarge the perspective of disability in patients with migraine, considering both symptoms, activities and the role of environmental factors.

Functioning and disability in Parkinson's disease.

OBJECTIVE: To describe functioning and disability of patients with Parkinson's Disease (PD) according to the model endorsed by the International Classification of Functioning Disability and Health (ICF). DESIGN: Adult PD patients were consecutively enrolled. The ICF checklist and the WHO Disability Assessment Schedule II (WHO-DAS II) were administered in individual sessions. Hoehn and Yahr Staging (HY) was used to define PD severity. Descriptive analyses have been performed to report on HY and WHO-DAS II scores. ICF categories reported as a problem by more than 20% of patients are described in detail. RESULTS: Ninety-six patients with PD (mean age 64.1, 33.3% females) were enrolled, 48.4% of them were in HY class 2. WHO-DAS II mean score was 18.1 and the most severe limitations are reported in getting around and in participation to social situations. A total of 71 ICF categories reached the threshold of 20%, mostly derived from Activities and Participation domain. CONCLUSIONS: We reported information on a broad set of domains, expanding those PD-specific, such as reduced mobility. Our results are useful to define what dimensions have to be considered to expand disability assessment in patients with PD, considering both symptoms, activities and the role of environmental factors.

Disability and functional profiles of patients with migraine measured with ICF classification.

To describe the functional profiles of patients with migraine, and the relationships between symptoms, activities and environmental factors, using WHO's International Classification of Functioning (ICF). Patients were consecutively enrolled at the Besta Institute of Milan. The ICF checklist was administered and two count-based indexes developed: 'extension', containing ICF categories rated with qualifiers 1-4, and 'severity', containing ICF categories rated with qualifiers 3-4. Categories rated with qualifiers 1-4 in at least 50% of patients are described separately. Spearman's correlation was performed to identify the relationships between symptoms, activities and environmental factors; linear regressions were performed to identify the best predictors of performance indexes in activities and participation domain. One hundred and two patients joined this study. Twenty-eight categories rated with qualifiers 1-4 in at least 50% of patients are reported: they include difficulties in daily activities, in mobility and in labor activities. Capacity and performance indexes are significantly different. Low correlations are reported between body functions impairments and limitations in activities and participation, slightly higher with capacity indexes. Environmental factors are mildly correlated with capacity indexes. Environmental factors play a relevant role in improving functioning of patients with migraine. Nevertheless, difficulties in activities and participation are explained more by functional impairments than by the effect of environmental factors: in particular, no facilitators target difficulties in work activities or mobility. To plan appropriate interventions that meet patients' needs, especially in the labor sector, methodologies and tools are needed to couple information on symptoms, on the difficulties in executing activities and on environment's features.

Use of ICF to describe functioning and disability in children with brain tumours.

PURPOSE: To underline the importance of Environmental Factors for reducing Disability and to demonstrate the complex condition of life, especially in terms of social inclusion and participation for children and adolescents affected by brain tumour. METHOD: An observational study applying the ICF version for Children and Youth (ICF-CY), the quality of life KIDSCREEN questionnaires and the Vineland assessment was performed. Age-specific ICF-CY Questionnaires were used to interview children at three time-points. RESULTS: Twenty-nine children were enrolled. Social life and relationships were crucial for defining children's disability level: formal and informal relationships showed to be very relevant to improve functioning (presence of facilitators in terms of more that 20% of cases). The severity of the disease makes the attention deeply focussed on treatment, neglecting other very important aspects in children's or adolescents' life such as their participation in life. CONCLUSIONS: The project highlighted some relevant issues about functioning and disability of these patients, in light of ICF's Biopsychosocial model of disability. Different rehabilitation projects are necessary for children and adolescents living after brain tumour. Considering treatment and the severity of tumour is very important to define pathways that should also include social and interpersonal aspects.

ICF in neurology: functioning and disability in patients with migraine, myasthenia gravis and Parkinson's disease.

PURPOSE: To report and compare functional features of patients with migraine, myasthenia gravis (MG) and Parkinson's disease (PD) with the International Classification of Functioning, Disability and Health (ICF). METHOD: Adult patients with migraine, MG and PD were enrolled and the ICF checklist administered. Count-based indexes were calculated for each ICF chapter and domain. Indexes were compared across conditions by means of ANOVA; relationships between ICF domains were evaluated using Spearman's correlation; group based on disability status were defined through cluster analysis and compared with disease groups using chi(2) test. Finally, most prevalent ICF categories were identified. RESULTS: A total of 300 patients were enrolled and specific differences in BF, BS, A&P and EF indexes are reported. Spearman's correlations reported moderate relationships between BF and A&P indexes, whereas the correlation between A&P and EF is lower. Cluster analysis and chi(2) test show that patients with Migraine and MG are more likely to report moderate and low disability, whereas patients with PD are more likely to report moderate or severe disability. A total of 60 ICF relevant categories, mostly from A&P, were identified. CONCLUSIONS: Our study provided a description of functioning and disability domains in migraine, MG and PD and enabled to report the impact of EF in determining the actual disability experience.

Implementing the ICF in a psychiatric rehabilitation setting for people with serious mental illness in the Lombardy region of Italy.

PURPOSE: We describe issues encountered in implementing the International Classification of Functioning, Disability, and Health (ICF) in a comprehensive psychiatric rehabilitation settings for people with Serious Mental Illness (SMI), with the goal of facilitating other implementation projects and stimulating international discussion. METHODS: In 2006, the Hospital Mellino Mellini Department of Mental Health undertook a 2-year evaluation of the applicability of the ICF to its community-based program for people with SMI, in collaboration with the Neurological Institute Carlo Besta Foundation. An ICF-based assessment of functional status was administered at intake, 3 months, and at 6 months, using an extended checklist of ICF codes determined to reflect the most important aspects of functioning among the SMI client population. All project focused on three important aspects of participation of these persons: housing, working, and socialization. RESULTS: Issues encountered during the project related to: (1) the identification of a relevant code set for the population; (2) difficulty in administering the checklist as a primary functional status measure; (3) whose perspective would be followed in rating functional status; (4) how to conceptualize the ICF Capacity qualifier; and (5) the need for teamwork and culture change for successful ICF implementation. CONCLUSIONS: On the basis of this experience and input from an international workshop convened by the Department, the project team concluded that the ICF is a helpful conceptual frame for functional status among people with SMI, promotes a common language and integrated treatment model, supports the development of individual rehabilitation plans, and can be used to improve services for this population.