A longitudinal ICF-CY-based evaluation of functioning and disability of children born with very low birth weight.

This paper aims to describe the longitudinal changes in disability, defined by the International Classification of Functioning, Disability, and Health - Children and Youth version (ICF-CY) biopsychosocial model, and developmental outcomes in a cohort of 56 very low birth weight children over 14-20 months. We used a neurofunctional assessment, the Griffiths Mental Development Scales-Revised: 2-8 years (Griffiths 2-8) to evaluate psychomotor development and the ICF-CY questionnaire for ages 0-3 and 3-6 to address children's disability. Extension indexes on the basis of ICF-CY categories were computed, and longitudinal change was tested. Complete follow-up was available for 55 children (mean age 36.7 months, SD 6.7). Considering the sample as a whole, neurofunctional assessment, Griffiths score and disability were basically stable. When the subsample of children with the higher baseline functioning was taken into account, some degree of worsening, in terms of an increase in the number of impairments and limitations, was found. Our results show that disability profiles, neurofunctional assessment and global development were basically stable, except for the subgroup of children who were in the intermediate/high-functioning cluster at baseline. The increased disability among these children might be because of the possibility to observe a wider set of age-specific problems, such as emotional, regulation and social abilities that are not detectable at an early stage of development and that might lead to reduced participation in social activities.

Ageing of people with Down's syndrome: a systematic literature review from 2000 to 2014.

Life expectancy of people with Down's syndrome (DS) has increased considerably, now exceeding 60 years. People with DS start to get old around the age of 45. By referring to the WHO's International Classification of Functioning, Disability and Health (ICF) biopsychosocial perspective, this study aimed to present an up-to-date review of the past 14 years of literature concerning the ageing of people with DS. PUBMED, PsycInfo and the Social Sciences Citation Index were searched for studies published between 2000 and 2014. Studies were selected if they were written in English, focused on people more than 45 years of age with DS, and if terms related to DS and ageing appeared in either the title or the abstract. A total of 30 studies were retrieved and their meaningful concepts were linked to the ICF. In total, 38 ICF categories were identified that were mainly related to intellectual functions (b117) (19%), general metabolic functions (b540) (7.4%), mobility of joint functions (b710), muscle power functions (b730) (4.2%), gait pattern functions (b770) (4.2%) and structure of the brain (s110) (4.3%). Only two studies considered environmental factors, and only one considered the joint analysis of health condition and environmental factors. Data about the ageing of people with DS are predominantly based on medical evaluations and descriptions of their physical impairments. Few attempts have been made towards a comprehensive assessment of elderly people with DS with a joint analysis of their health condition and its interaction with environmental factors.

A survey on feasibility of ICF-CY use to describe persisting difficulties in executing tasks and activities of children and adolescent with disability in Italy.

BACKGROUND: The criterion for the provision of disability benefits to people under 18 in Italy is the presence of persistent difficulties in carrying out the duties and functions of their own age; however, no national guidelines are available to support the Disability Commissions in assessing such difficulties. OBJECTIVE: This study identified the different kinds of persisting difficulties in performing tasks and activities of children and adolescents with disability in Italy. METHODS: We used a protocol based on a selection of 55 categories taken from the Activity and Participation components of the International Classification of Functioning, Disability and Health - Children and Youth version. Problems were represented dividing children by age groups, and categories were selected as relevant if reported by 20% of the cases as very severe/complete problems. A count-based methodology was chosen and categories were counted at the level of domain, showing differences related to age groups. Count-based complexity and severity indexes were calculated, reflecting the global amount of problems and the portion of very severe/complete ones. RESULTS: Out of 415 children with disability enrolled in the study, 290 had persisting difficulties, with those referring to domestic life, major life areas and learning being the most common, and with specific age-related trends. The highest number of problems was reported for children in the 4-6 year age group. CONCLUSIONS: Our approach is meant to foster a way toward understanding disability and functioning as a continuum, based on the amount and severity of difficulties that children may have, as opposed to a categorical, diagnosis-based approach.

Sociodemographic features and diagnoses as predictors of severe disability in a sample of adults applying for disability certification.

To assess the association between sociodemographic factors and factors related to number and type of comorbidities, and presence of severe disability in a population of adults applying for disability certification. Data have been collected using a protocol based on the ICF Classification. Hierarchical logistic regression was performed to assess the association between severe disability and sex, age, marital status, education, living situation, number, and type of diagnosis. In total, 552 individuals were enrolled (46.2% men, mean age 62.3 years), with an average of three diagnoses, mostly mental, neurological, and cardiovascular. Being married/cohabitating and higher education levels were associated with reduced odds of severe disability; living with other individuals, such as in an institution, was associated with increased odds. Our results show that age and education level were associated with severe disability, and that no association with number of diseases was found: in our opinion, this is specific to the population of individuals with disability.

The development of a structured schedule for collecting ICF-CY-based information on disability in school and preschool children: an action research from Italy.

The aim of this study was to present the development of an instrument to collect disability information in school settings, based on the International Classification of Functioning, Disability and Health, Children and Youth version (ICF-CY): the ICF-PEI Schedule (ICF-CY-based schedule for Individualized Education Plan). Through an action-research process, a group of 14 teachers participated in the definition of a comprehensive list of ICF-CY categories, which were then used in a pilot test: categories relevant in at least 30% of the cases were retained. Teachers also reported the most relevant difficulties they had in using the ICF-CY questionnaires: these were discussed in plenary. On the basis of a pilot test and teachers' difficulties, a set of structured, easy to use and feasible questions for the school context were developed. A total of 118 ICF-CY categories were included in the preliminary list and 67 were retained. The most relevant difficulties in using ICF-CY questionnaires were as follows: obtaining reliable information on bodily impairments; using capacity in activities and participation; using qualifiers in 'borderline situations'; and identifying systems and policies as barriers or facilitators. The ICF-PEI Schedule is composed of 62 items, with a simplified rating scale. Teachers are asked to rate performance, which is directly observed, and to address which environmental factors impact it; thus, environmental factor rating is simplified. The ICF-PEI Schedule was drafted as a feasible instrument for school settings to collect and exploit functioning and disability data. Teachers can fruitfully employ it to assist in the definition of educational objectives and verify them longitudinally.

A population survey in Italy based on the ICF classification: recognizing persons with severe disability.

Aim of this paper is to describe functioning of subjects with "severe disability" collected with a protocol based on the International Classification of Functioning, Disability, and Health. It included sections on body functions and structures (BF and BS), activities and participation (A&P), and environmental factors (EF). In A&P, performance without personal support (WPS) was added to standard capacity and performance. Persons with severe disability were those reporting a number of very severe/complete problems in BF or in A&P-capacity superior to mean + 1SD. Correlations between BF and A&P and differences between capacity, performance-WPS, and performance were assessed with Spearman's coefficient. Out of 1051, 200 subjects were considered as severely disabled. Mild to moderate correlations between BF and A&P were reported (between 0.148 and 0.394 when the full range of impairments/limitations was taken into account; between 0.198 and 0.285 when only the severe impairments/limitations were taken into account); performance-WPS was less similar to performance than to capacity. Our approach enabled identifying subjects with "severe disability" and separating the effect of personal support from that of devices, policies, and service provision.

The relationship between health-related quality-of-life and disability in patients with controlled epilepsy: a cross-sectional observational study.

OBJECTIVE: The aims this study were to assess the impact of epilepsy on the health-related quality-of-life (HRQoL) of patients and on patterns of disability and to describe the relationship between disability and HRQoL in adult patients with controlled epilepsy. DESIGN: Disability was measured with the World Health Organization Disability Assessment Schedule, second version (WHO-DAS II), whereas HRQoL was measured with the 36-item Short-Form Health Survey (SF-36). The relationships between SF-36 and WHO-DAS II were evaluated with Pearson correlation. The impact of epilepsy on disability and HRQoL was assessed by comparing WHO-DAS II and SF-36 scores with the Italian normative values and by evaluating different disability and HRQoL profiles in patients self-reporting change in health state against those reporting no change. RESULTS: Few differences between patients' and normative scores were observed. In particular, patients with a stable health state reported higher HRQoL and lower disability status, compared with those reporting an improvement or a decline in health state. The relationships between WHO-DAS II and SF-36 were significant but were generally low or moderate. CONCLUSIONS: Disability and HRQoL scores of patients with controlled epilepsy were not significantly different compared with those of the general population, in particular among stable patients. Measures of HRQoL and disability evaluate different psychosocial aspects of epilepsy and can be used jointly to evaluate outcomes.

Quality-of-life and disability in patients with stroke.

OBJECTIVE: The aim of this study was to assess the impact of stroke on health-related quality-of-life (HRQoL) and disability, the relationships between the two constructs, and to what extent these two constructs are affected when perceived health state changes. DESIGN: The World Health Organization Disability Assessment Schedule (WHO-DAS II) and the 36-Item Short-Form Health Survey (SF-36) were administered via mail to a sample of adult stroke survivors. Comparison against normative Italian values was made using one-sample t test. SF-36 and WHO-DAS II scores were compared between employed and unemployed patients and between patients self-reporting improved, unchanged, and decreased health state using analysis of variance with least significant difference post hoc test. The relationships between SF-36 and WHO-DAS II were assessed using Pearson correlation. RESULTS: A total of 111 patients were enrolled. The SF-36 and WHO-DAS II scores of stroke patients were worse in comparison with Italian normative values. Moderate to strong correlations between all scales and the summary score of WHO-DAS II and SF-36 were found: The worse the disability is, the lower the HRQoL. Patients reporting worse health status in the previous year reported higher levels of disability and lower HRQoL. Employed persons had higher HRQoL and lower disability levels. CONCLUSIONS: The generic HRQoL instrument and disability schedule used in this study demonstrated strong relationship between these two dimensions. It also gave a more detailed picture of the aspects of disability and HRQoL that are most relevant for the persons after stroke and that should be studied further in the future research.

The clinical application of the biopsychosocial model in mental health: a research critique.

Engel applied the term biopsychosocial to medicine to emphasize the need to take into account the psychologic and social aspects of medical practice. After an overview of the history of the biopsychosocial (BPS) model, we review criticisms of the model to reformulate its deficiencies and then analyze its application in mental health care. The objectives of this paper are 4-fold: (1) to examine the use of the BPS model since Engel's 1977 article to the present; (2) to examine the reasons for the popularity of the BPS model as well as the problems it faces when applied to mental health care; (3) to introduce two instruments, the International Classification of Functioning, Disability, and Health and the INTERMED, which implement the BPS model; and (4) to show why the BPS model is not yet a model of mental health practice. A total of 62 publications were retrieved and reviewed in the ScienceDirect, PubMed, and Scopus databases, and 32 of them were eventually included in this review. This is the first review of the studies published that applied the BPS model in mental health in the last 33 yrs. These criticisms are used to construct a more workable vision of the BPS model of clinical practice.

Measuring participation in children with Gilles de la Tourette syndrome: a pilot study with ICF-CY.

PURPOSE: Environmental factors (EF) have an important role on Tourette's symptoms and the same factors can be decisive on the impact that the disease has on people with Tourette syndrome (TS) daily life. The research was carried out by the Neurological Institute Carlo Besta IRCCS Foundation with the principal objective of describing the complete range of functional profiles of children with TS, to define the functioning and the difficulties in social participation. METHODS: The research protocol was composed of the ICF-CY questionnaire, WHO-DAS II proxy version, the Vineland Adaptive Behavior Scale and the Kidscreen questionnaires - Quality of life (QoL) questionnaires for children and adolescents. The research protocol involved a multidisciplinary team (medical staff, psychologist, pedagogist). RESULTS: The children reported higher QoL's level than the QoL attributed by parents. The Vineland scores reflected considerable difficulties in socialisation. Through the EF analysis, this study highlights the facilitating role of the immediate family and health professionals. CONCLUSIONS: Beyond the clinical symptoms, this study points out that the therapeutic elements must be identified by a change of environment, and not only in a child's adaptation ability.

The White Book on Disability in Italy: an ICF-based Italian survey.

PURPOSE: To describe the functioning and disability profiles of Italian person with disability (PwD) getting invalidity pension. METHODS: Adult subjects were selected within the registries of local health agencies that provide invalidity certificates. The International Classification of Functioning Disability and Health (ICF) checklist was administered by trained interviewers. Count-based indexes were calculated for each ICF chapter and domain. Descriptive analysis and paired-sample t-test for evaluating differences between capacity and performance indexes in Activities and Participation (A&P) were employed. RESULTS: A total of 742 persons were enrolled. Mean age among children and youth (N = 106) was 8.6 years, and among adults (N = 636) was 47.6 years. Most common health conditions are neurological diseases (30.2%), tumors (18.1%) and mental disorders (13.5%). Body Functions and Structures impairments are consistent with sample compositions. In A&P, capacity indexes are higher than performance ones, and facilitators are essentially reported among Environmental Factors (EF). CONCLUSIONS: ICF-based tools are adequate to capture difficulties in different A&P areas, and to estimate EF's effect. In our study, the widest difficulties and the widest impact of EF are reported in areas describing activities of daily living, while areas describing communication, employment and leisure time activities are less problematic but, at the same time, less influenced by EF.

Role of disability-case manager for chronic diseases: using the ICF as a practical background.

PURPOSE: To report on the case manager's activity in a hospital setting as a supporting professional for families that need to deal with different services and professionals to get answers on their health and psychosocial needs. METHOD: A qualitative analysis and interpretation based on the case manager observations and ICF checklist evaluation with medical and rehabilitation professionals were employed. RESULTS: The case study presented aimed to show one of the most typical interventions of the case manager: the creation of a network around a person with complex and multifaceted needs, where this network does not exist. Case manager bridged the gap between health and social services, specifically organising home-based rehabilitation and helping to find appropriate assistive devices. CONCLUSIONS: This case study showed that the case manager's role is fundamental to support patients and their families in relating to the different services and professionals they need, and illustrated one of the most typical interventions of the case manager: the creation of a network around a person with complex and multifaceted needs, where this network does not exist.

Preliminary results of ICF dissemination in primary health care in Mozambique: sharing the Italian experience.

PURPOSE: To present the preliminary results of training courses on the International Classification of Functioning, Disability and Health (ICF) prepared by Italian WHO FIC CC and to report on strategies for ICF dissemination among primary health care (PHC) workers in Mavalane Health Area, Maputo, Mozambique. METHODS: A participant-observer description of ICF principles introduction and development of ICF-CY modified checklists in Mavalane health area according to a person-environment interaction classification (PEIC) tree. RESULTS: The first ICF courses were held at Mavalane hospital and involved 25 health workers and 24 members of the health committee acting in the local area. The courses were prepared having as a framework the theoretical principles of the UN Convention of rights of persons with disabilities and the ICF bio-psychosocial model. The trainers adapted and modified the course materials to increase the applicability of the protocol to the cultural and social reality of Mozambique, eventually applying the person-environment interaction classification (PEIC) tree. CONCLUSIONS: The very first phase of this project indicates that the use of the ICF checklist is feasible also in a crowded and busy environment like some PHC units of a developing country. However, data collection require a simpler and lighter to use data compilation tool. The proposed new checklist, which includes a PEIC tree, makes easier the compilation and the collection of data.

Towards a common disability assessment framework: theoretical and methodological issues for providing public services and benefits using ICF.

PURPOSE: To report on the preliminary results of an Italian project on the implementation of an ICF-based protocol for providing public services and benefits for persons with disabilities. METHODS: The UN Convention on the Rights of persons with disabilities (UNC) was mapped to the ICF, and core elements were implemented in an ICF-based evaluation protocol. A person-environment interaction classification (PEIC) tree was also developed for defining evaluation outputs. RESULTS: The PEIC and the ICF-based protocol are the guideline and the data interpretation source, respectively, for providing public services and benefits. They enable to assign persons to different services, from surveillance and monitoring to facilitator provision or sustain over time, to barrier removal or to the reorganisation of environmental factors provision. A detailed description of the target intervention is made available through the implementation of a protocol, which points out the effect of personal support and other environmental factors. CONCLUSIONS: The detailed description of functioning and disability provided by our methodology can help policy makers and administrators in decision making, on the basis of a description of real needs, and in targeting person-tailored interventions.

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.