Care pathways models and clinical outcomes in Disorders of consciousness.

OBJECTIVE: Patients with Disorders of consciousness, are persons with extremely low functioning levels and represent a challenge for health care systems due to their high needs of facilitating environmental factors. Despite a common Italian health care pathway for these patients, no studies have analyzed information on how each region have implemented it in its welfare system correlating data with patients' clinical outcomes. MATERIALS AND METHODS: A multicenter observational pilot study was realized. Clinicians collected data on the care pathways of patients with Disorder of consciousness by asking 90 patients' caregivers to complete an ad hoc questionnaire through a structured phone interview. Questionnaire consisted of three sections: sociodemographic data, description of the care pathway done by the patient, and caregiver evaluation of health services and information received. RESULTS: Seventy-three patients were analyzed. Length of hospital stay was different across the health care models and it was associated with improvement in clinical diagnosis. In long-term care units, the diagnosis at admission and the number of caregivers available for each patient (median value = 3) showed an indirect relationship with worsening probability in clinical outcome. Caregivers reported that communication with professionals (42%) and the answer to the need of information were the most critical points in the acute phase, whereas presence of Non-Governmental Organizations (25%) and availability of psychologists for caregivers (21%) were often missing during long-term care. The 65% of caregivers reported they did not know the UN Convention on the Rights of Persons with Disabilities. CONCLUSION: This study highlights relevant differences in analyzed models, despite a recommended national pathway of care. Future public health considerations and actions are needed to guarantee equity and standardization of the care process in all European countries.

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.

Functioning and disability of children and adolescents in a vegetative state and a minimally conscious state: identification of ICF-CY-relevant categories.

Children in a vegetative state (VS) and a minimally conscious state (MCS) experience severe limitations as a consequence of nervous system deficits and require consistent environmental support. However, disability in VS and MCS children has never been described following a model that accounts for the presence of the symptoms, limitations and the support required. Therefore, the aim of this paper is to describe the functioning and disability of children in VS and MCS using the International Classification of Functioning, Disability and Health - version for Children and Youth (ICF-CY). VS and MCS children were enrolled in postacute settings and at home. ICF-CY questionnaires were filled in using information available from clinical documentation, direct observation and from children's parents. ICF-CY categories were considered as relevant if used in at least one-third of the children. In total, 36 children and adolescents (22 in VS, 25 males) were enrolled. The majority developed VS and MCS following a nontraumatic event; the mean age was 114.8 months and the mean duration of condition was 50.1 months. A total of 94 ICF-CY categories were reported as relevant: 26 were from body functions, mostly from mental functions and mobility chapters; nine from body structures, 32 from activities and participation, mostly from learning, mobility and self-care chapters; and 27 from environmental factors. The use of ICF-CY enables to obtain a specific profile of functioning for each child that can be coupled with known issues, such as loss of brain functions and provision of life-sustaining interventions.

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 dystonic child treated with deep brain stimulation: ICF reading of a high-tech approach.

PURPOSE: The available tools used to describe childhood dystonia tend to offer a monodimensional view of the person functioning, which may overlook significant changes induced by treatment. We applied the International Classification of Functioning, Disability and Health (ICF) perspective to the description of the clinical picture of a dystonic child treated with deep brain stimulation (DBS) to get a more global representation of the treatment effect. METHOD: An 8-year-old child with secondary dystonia was selected within the institutional program for advanced treatment of pediatric dystonia as a candidate for bilateral implantation of electrodes into globus pallidus and chronic stimulation. The International Classification of Functioning, Disability and Health -children and youth (ICF-CY) based project and program format was used by the rehabilitation team to define the clinical picture, rehabilitation objectives, and to verify the outcome. RESULTS: The rehabilitation project and program included 39 ICF categories: 14 body functions, two body structures, 18 activities and participation, and five environment. On such basis we defined the individualized specific rehabilitation objectives and we checked for clinical changes after DBS. CONCLUSION: The ICF-CY format provides a complete and balanced profile of functioning in secondary dystonia treated with DBS and it could offer a novel perspective for outcome evaluation.

Children with disability at school: the application of ICF-CY in the Veneto region.

PURPOSE: To show the feasibility and consequences at 1 year of the use of the International Classification of Functioning, Disability and Health, version for Children and Youth (ICF-CY) in the process of social and scholastic inclusion for students with disability in a district of Northeastern Italy (Treviso province). METHODS: We describe the novel procedure for inclusion of students with disability launched by disability and education Services of the Treviso Province. The protocol was organized in four steps and involved health professionals and teachers throughout the whole Province. The implementation was preceded by intensive exposure of the involved professionals to the ICF-CY model and structure and by workshops in which the participants elaborated the actual documents accompanying the process of scholastic inclusion according to the specific Law (104/1992): the notification card, the identification of the student with disabilities, the functional diagnosis, the dynamic functional profile and the individual educational plan. RESULTS: The results show that the adherence to the new protocol was very satisfactory, as well as the perceived validity and relevance of the new documents elaborated with ICF language. The experimentation in progress provided interesting indications on the way to apply the ICF-CY to the scholastic inclusion processes. CONCLUSIONS: The largest alphabetization effort on ICF attempted in a Public Health System (disability service) and in the school system improve the social and scholastic participation of student with disability and can reduce the barriers in the environment.

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.