Reframing QoL assessment in persons with neurodevelopmental disorders.

The paper reviews the international literature on quality of life (QoL) for persons with neurodevelopmental disorders (NDD) in order to define the theoretical frame for optimal assessment. The application of the QoL approach to assessment procedures should be based on three main aspects: shared QoL, personal QoL and family QoL. The first aspect refers to characteristics of individual life that are shared with other people. The second aspect proceeds from the fact that each individual has a changing set of personal attributes that determine the subjective experience of life. In the third aspect the previous two are applied to the family that includes a person with NDD. Disability impacts the whole family and the determination of appropriate conceptualization of family outcomes requires an understanding of the impact of members with a disability on family QoL. At any level, it seems best to take a comprehensive approach to assessing QoL, integrating subjective and objective aspects, self-reports and hetero-evaluations. The QoL approach is above all a way to explore the rich intricacies of personal quality of life. Such assessment may be used effectively with people with NDD, independently from the severity of their functioning impairment. Individuals with profound ID may express their inner states through consistent behavioural repertoires, which can be discerned by persons closest to them and validated by more independent others. Attention must be paid in using non-generic instruments, such as those that measure health-related QoL. Although they do focus on the individual person, they still support a theoretical perspective of QoL that has not departed significantly from the traditional medical approach. Currently available generic tools, although they have some common conceptual and evaluation characteristics, still show considerable differences in the areas to be included in "shared QoL", the dimensions used to evaluate "Individual QoL", and the role attributed to indicators of QoL. QoL assessment should not represent a classification of individuals, services or systems, but it should help provide, within service systems and organizations, a value system that is consistent with those values held by people with NDD.

Semantic aspects of the International Classification of Functioning, Disability and Health: towards sharing knowledge and unifying information.

During the last decade, under the World Health Organization's direction, the International Classification of Functioning, Disability and Health (ICF) has become a reference tool for monitoring and developing various policies addressing people with disability. This article presents three steps to increase the semantic interoperability of ICF: first, the representation of ICF using ontology tools; second, the alignment to upper-level ontologies; and third, the use of these tools to implement semantic mappings between ICF and other tools, such as disability assessment instruments, health classifications, and at least partially formalized terminologies.

Description of the person-environment interaction: methodological issues and empirical results of an Italian large-scale disability assessment study using an ICF-based protocol.

BACKGROUND: There is a connection between the definition of disability in a person-environment framework, the development of appropriate assessment strategies and instruments, and the logic underpinning the organization of benefits and services to confront disability. METHODS: The Italian Ministry of Health and Ministry of Labor and Social Policies supported a three-year project for the definition of a common framework and a standardised protocol for disability evaluation based on ICF. The research agenda of the project identified 6 phases: 1) adoption of a definition of disability; 2) analytical breakdown of the contents of disability definition, so as to indicate as clearly as possible the core information essential to guide the evaluation process; 3) definition of a data collection protocol; 4) national implementation of the protocol and collection of approximately 1,000 profiles; 5) proposal of a profile analysis and definition of groups of cases with similar functioning profiles; 6) trial of the proposal with the collected data. The data was analyzed in different ways: descriptive analysis, application of the person-environment interactions classification tree, and cluster analysis. RESULTS: A sample of 1,051 persons from 8 Italian regions was collected that represented different functioning conditions in all the phases of the life cycle. The aggregate result of the person-environment interactions was summarized. The majority of activities resulted with no problems in all of the A&P chapters. Nearly 50.000 facilitators codes were opened. The main frequent facilitators were family members, health and social professionals, assistive devices and both health and social systems, services and politics. The focus of the person-environment interaction evaluation was on the A&P domains, differentiating those in which performance presented limitations and restrictions from those in which performance had no or light limitations and restrictions. Communication(d3) and Learning and Applying Knowledge(d1) appeared as the more problematic A&P areas. Self Care(d5) was the domain in which facilitators were more effective in supporting functioning, suggesting that the Italian welfare system is mainly focused on providing care services for activities of daily living, jointly with the family. The cluster analysis was limited to those categories that were common to all age classes (38 categories out of 55). For a final representation, a solution with 6 clusters was chosen. CONCLUSIONS: An example is provided of how it is possible to plan empirical studies in which theoretical advances and operative goals on disability in a person-environment framework can support the definition of a research design, measurement strategies, and data analysis. The description of functioning and disability at population level is no more based on individual deficits or limitations. Personal profiles may be elaborated and groups created based on the characteristics of the person-environment interactions. Personal profiles may also be used as a "rationale" for defining personalized intervention programs.

Integrating research into policy planning: MHADIE policy recommendations.

MHADIE project (Measuring Health and Disability in Europe: Supporting policy development) aimed at developing realistic, evidence-based and effective national policies for persons with disabilities. A preliminary step towards this goal was the demonstration on the feasibility of employing the ICF in clinical, educational and statistical fields, which corresponds to the recognised need to enhance the European Union's capacity of analysis of disability, as highlighted in its Disability Action Plan 2006-2007. The ultimate outcome of the project is the production of 13 policy recommendations, dealing with statistics clinical and educational areas, and four general policy recommendations focusing on: (a) the need of coordinating and integrating disability conceptualization at all policy levels and across sectors; (b) the need of conducting longitudinal cohort studies which include children aged 0-6; (c) the need of reviewing transportation policies in light of the requirements of persons with disabilities; (d) the need of reviewing all disability policies to emphasise and support the role of the family, which is a consistent and substantial environmental facilitator in the lives of persons with disabilities.

Validation of the "World Health Organization Disability Assessment Schedule, WHODAS-2" in patients with chronic diseases.

BACKGROUND: The WHODAS-2 is a disability assessment instrument based on the conceptual framework of the International Classification of Functioning, Disability, and Health (ICF). It provides a global measure of disability and 7 domain-specific scores. The aim of this study was to assess WHODAS-2 conceptual model and metric properties in a set of chronic and prevalent clinical conditions accounting for a wide scope of disability in Europe. METHODS: 1,119 patients with one of 13 chronic conditions were recruited in 7 European centres. Participants were clinically evaluated and administered the WHODAS-2 and the SF-36 at baseline, 6 weeks and 3 months of follow-up. The latent structure was explored and confirmed by factor analysis (FA). Reliability was assessed in terms of internal consistency (Cronbach's alpha) and reproducibility (intra-class correlation coefficients, ICC). Construct validity was evaluated by correlating the WHODAS-2 and SF-36 domains, and comparing known groups based on the clinical-severity and work status. Effect size (ES) coefficient was used to assess responsiveness. To assess reproducibility and responsiveness, subsamples of stable (at 6 weeks) and improved (after 3 moths) patients were defined, respectively, according to changes in their clinical-severity. RESULTS: The satisfactory FA goodness of fit indexes confirmed a second order factor structure with 7 dimensions, and a global score for the WHODAS-2. Cronbach's alpha ranged from 0.77 (self care) to 0.98 (life activities: work or school), and the ICC was lower, but achieved the recommended standard of 0.7 for four domains. Correlations between global WHODAS-2 score and the different domains of the SF-36 ranged from -0.29 to -0.65. Most of the WHODAS-2 scores showed statistically significant differences among clinical-severity groups for all pathologies, and between working patients and those not working due to ill health (p < 0.001). Among the subsample of patients who had improved, responsiveness coefficients were small to moderate (ES = 0.3-0.7), but higher than those of the SF-36. CONCLUSIONS: The latent structure originally designed by WHODAS-2 developers has been confirmed for the first time, and it has shown good metric properties in clinic and rehabilitation samples. Therefore, considerable support is provided to the WHODAS-2 utilization as an international instrument to measure disability based on the ICF model.

The International Classification of Functioning Disability and Health, version for children and youth as a roadmap for projecting and programming rehabilitation in a neuropaediatric hospital unit.

OBJECTIVE: To test the impact of introducing a format based on the International Classification of Functioning Disability and Health, version for children and youth (ICF-CY) as a road-map for in-hospital paediatric neuro-rehabilitation on target definition, intra-team communication and workload as perceived by involved professionals. DESIGN: Single-centre pilot testing with impact assessment. PATIENTS: Team members of a tertiary care paediatric neurorehabilitation unit included 15 consecutive patients with severe neurological conditions. METHODS: An ICF-CY based format for rehabilitation projection and programming was constructed and tested for 12 months. The format comprises 3 sections: project, programme, and follow-up. Impact on the rehabilitation team was assessed with a questionnaire. RESULTS: All cases were described according to their specific needs with appropriate ICF-CY codes, and the interventions were linked to needs and targets. ICF-CY was judged an efficient tool in providing a road-map for rehabilitation in this setting, although concern was voiced about timing and workload. CONCLUSION: ICF-CY may work as a road-map for in-hospital paediatric neuro-rehabilitation. Its implementation results in perceived improvements in the process. Training requirements and accurate evaluation of timing, workload and organizational context are critical issues that should be addressed before results from the present experience are generalized.

[The evaluation of the correspondence of two systems of measurement: the case of Val.Graf FVG Residential Version and International Classification of Functioning, Disability and Health]. / La valutazione della corrispondenza di due strumenti di misura: il caso della Val.Graf FVG Versione residenziale e dell'International Classification of Functioning, Disability and Health.

OBJECTIVE: to study the links between the Val.Graf.FVG form and the International Classification of Functioning, Disability and Health (ICF). The Val.Graf.FVG form is a tool for a multidimensional evaluation of elderly people resident or with health domicile in Friuli Venezia Giulia and living in a care home. DESIGN: a qualitative analysis of the links between Val.Graf.FVG and ICF was performed following the mapping rules recommended by the literature. The links were searched for, with the support of a database, by two independent researchers expert in ICF and Val.Graf.FVG, respectively. When disagreement was present, a third researcher expert in ICF was involved. MAIN OUTCOME MEASURES: we searched for semantic links, semantic fields that cannot be linked and ICF constructs to which Val.Graf .FVG items refer to. RESULTS: 186 items out of 207 (89.9%) of the Val.Graf. FVG form could be semantically linked to 156 ICF categories. 21 items (10.1%) could not be linked. When looking at the constructs, it appears that while ICF assesses the level of functioning of an individual through four components (functions, structures, activity and participation, and environmental factors) put into operation by qualifiers (for example, capacity, performance), the Val.Graf.FVG form assesses the levels of autonomy and the quantity of personal and technological support needed by the elderly living in a care home. CONCLUSIONS: the mapping methodology accurately evaluates the characteristics and the conceptual structure of the measurement tools documented in the literature and/or used in care practice, facilitating their comparison. The analytical analysis of the items and constructs of the Val.Graf. FVG form confirmed that the aim of this tool is the definition of the support needed by an individual, while no information on his/her functioning level is given. Thus, the Val.Graf. FVG form should be used only to understand the quantity of resources necessary to assist elderly people living in a care home.

Eight years of ICF in Italy: principles, results and future perspectives.

PURPOSE: To report on the process of implementation and dissemination of the International Classification of Functioning, Disability and Health (ICF) [1] in Italy. METHODS: The Agenzia Regionale della Sanità of Friuli Venezia Giulia Region (ARSFVG) is a WHO Collaborating Centre for the Family of International Classifications. It collaborated with Italian research institutions such as the C. Besta Neurological Institute IRCCS Foundation, the Medea Institute, and the National Institute of Statistics in revising, field testing and validating the ICF in Italy and in the preparation of ICF-CY (Children and Youth Version). RESULTS: The value of ICF profiles in defining personalised programmes of interventions was explored by evaluating the link between ICF items and the UN Convention, which was taken as a criterion of clear ethical and political orientation in the evaluation of the disability condition. The first and main effort of ICF implementation was directed in the field of public health and welfare policies. Two main nationwide projects were launched: ICF and the labour polices in 2003 and ICF and the disability certification reforms in 2006. ICF also received a strong attention by the professional working in the school system, and was used to define the functioning profile of children and to establish personalised educational programmes. CONCLUSIONS: The implementation of ICF in Italy was strongly facilitated by a favourable cultural and scientific context.

Italian ICF training programs: describing and promoting human functioning and research.

Purpose of the article is to report on 5 years of ICF training experiences in Italy aimed at promoting a consistent approach to ICF's field application. More than 7000 persons participated in around 150 training events: almost half were organised by political bodies, at national, regional or local level, directly linked to implementation experiences. Few training events were organised by the school sector, while training commissioned by NGOs represent a relevant area and, in our opinion, constitute the first step towards a full inclusion of persons with disabilities. Central pillars of our training modules are: the inclusion of all ICF components in the description of functional profiles, the need of providing brief theoretical background information before moving to practical aspects and the importance of providing personalised face to face training modules, in contrast to self-administered learning modules, or web-based protocols. On the basis of our experience, we can conclude that training's objectives are generally reached: trainees improved their knowledge of the ICF and its related tools, and are able to begin practical applications in their contexts.

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.

Disseminating the WHO International Classification of Functioning Health and Disability (ICF) in the Veneto region of Italy.

PURPOSE: To show the feasibility and effect of a large formation effort focused on the International Classification of Functioning, Disability and Health (ICF), which may introduce a revolutionary new conceptual framework for people involved in rehabilitation services. METHODS: We here describe the large information/formation project launched by the Regional Direction for Social Services of the Veneto region (Italy). Here we describe the first of the two steps of the project, aimed to reach 900 health professionals throughout the whole region. They were exposed to a structured modular course consisting of a mix of frontal lectures and workshop sessions. During the workshop sessions the participants were confronted with questions referring to the actual application of ICF in their services. RESULTS: The results show that the attendance (90%) was very high. The workshop sessions provided interesting indications on the possible applications of ICF in the clinical settings, as well as points of strength and potential problems that the implementation of ICF may have in the Regional Health Service. CONCLUSIONS: To our knowledge this is the largest alphabetization effort on ICF attempted in a public health system, and it indicates a possible effective approach to its controlled diffusion and future implementation.

Training on the International Classification of Functioning, Disability and Health (ICF): the ICF-DIN Basic and the ICF-DIN Advanced Course developed by the Disability Italian Network.

The objective is to present training on the International Classification of Functioning, Disability and Health (ICF) prepared by the Disability Italian Network (DIN) and to present strategies of ICF dissemination in Italy. A description of DIN's training methodology, prepared in collaboration with World Health Organization (WHO) experts, is provided within its practical applications in health, labour, rehabilitation and statistical sectors. The ICF-DIN Basic Course is eight hours long and focuses on ICF basic principles, structure and application in different settings. The ICF-DIN Advanced Course, three days long followed by three months of distance learning, assumes Basic Course completion, and focuses also on ICF-checklist's coding and WHO-DAS II administration. The first training courses' outcomes, held in Italy and addressed to health, social and labour professionals, are provided. The feedback received by participants at the end of the courses showed that the main mistake they made was to consider ICF as an assessment instrument. The ICF-DIN training course was crucial in explaining the correct use of the ICF as a classification and to show its impact and usefulness on daily practice, particularly in multidisciplinary teams. The ICF-DIN courses already carried out in Italy show that this teaching methodology teaches how to avoid incomplete applications, simplification and misunderstanding of ICF's complexity.

Risk factors correlated with post-operative mortality for hip fracture surgery in the elderly: a population-based approach.

OBJECTIVES: To estimate the effect of waiting time for surgery and volume of surgical activity on mortality in patients with hip fracture and to compare risk-adjusted outcomes between hospitals providing surgery for such patients. DESIGN: Retrospective cohort study. SETTING: Friuli Venezia Giulia, Italy. PARTICIPANTS: A total of 6,629 elderly people who underwent surgery for hip fracture between 1st January 1996 and 31th December 2000. MAIN OUTCOME MEASURES: In-hospital, 6-month and 1-year mortality rate. RESULTS: In-hospital mortality rate was 5.4%. At six months, the mortality rate was 20.0%, and at 1 year 25.3%. Age, male sex, and comorbidity were significant predictors of mortality. Logistic regression analysis indicated that, after controlling for main patients risk factors and taking into account the hospital level variability, there was no significant association between increase in mortality rate and more than 1 day of waiting time for surgery (OR 0.90; 95% CI 0.58-1.40 for in-hospital mortality). One hospital had a significantly higher mortality rate than the others; high hospital volume for hip fracture surgery was associated with worse outcomes (OR 1.57; 95% CI 1.38-1.78 for in-hospital mortality). Mortality after hip fracture decreased significantly from 1996 to 2000 (OR 0.85; 95% CI 0.80-0.90). CONCLUSIONS: Longer waiting time for surgery was not associated with mortality after adjusting for patient risk factors, and taking into account hospital level variability. Hospital level variability was statistically significant, and was partially explained by the total volume of hospital surgical activity. The decrease in mortality between 1996 and 2000 was confirmed by multivariate models.

The impact of stroke in Italy: first step for a National Burden of Disease Study.

PURPOSE: To calculate the impact of stroke in Italy in 1998, expressed in terms of disability adjusted life years (DALYs) according to the WHO Global Burden of Disease (GBD) Study. METHOD: The data on first-ever stroke incidence (FES), remission rate and case fatality derived from the health information system and a research on post-FES disability of the Friuli Venezia-Giulia (FVG) Region, were used to compute the years of life lived with disability (YLDs), which were added to the years of life lost due to premature mortality (YLLs), calculated from stroke mortality data, to obtain the DALYs. The results were extrapolated to the rest of Italy after examination of national stroke registries data. RESULTS: Standardized estimated incidence of FES in FVG in 1998 was lower (135 cases of FES per 100 000 inhabitants) than that reported in other published national and international studies. Estimated case fatality rate and distribution of post-FES disability did not differ from other similar studies. About 100 000 YLLs and 273 000 YLDs due to FES were estimated in 1998 for Italy. CONCLUSIONS: The estimated proportion of the YLDs on total DALYs (27%) is comparable with that obtained in the EURO-A group (the European area including Italy) of the GBD 2000 Study (31%), and the Australian BoD Study (35%).

Epidemiology of major injury in the population of Friuli Venezia Giulia-Italy.

OBJECTIVE: To provide reliable and comparable information on major injury (MIJ) (Injury Severity Score (ISS) > 15) by establishing a comprehensive and Utstein-style compliant registry of all occurrences in a defined geographical area. METHODS: Prospective, population-based, 12-month study targeting the 1,200,000 inhabitants of the Italian region Friuli Venezia Giulia (FVG). Deliberate self-harm was excluded. RESULTS: The total number of MIJ cases was 627, the resulting incidence 522 per million per year. Trauma was mostly blunt (98.4%). Young (15-44 years) adults (54.8%) and males (78.6%) were most affected. Leading mechanisms of injury were traffic accidents (81%) and falls (9.1%). Most events occurred in rural (80.9%) areas despite one third of the regional population living in major urban centres. Summer and weekends carried the highest frequency. The mean ISS ( n = 455 ) was 30.0, median 25. On-scene vital parameters were often subnormal, e.g. 53.9%, GCS < 14. The Emergency Medical System was nearly always activated (98.4%). The time intervals were within standards although in part susceptible of improvement. The percentage of direct triage to the definitive hospital was 79.8%. Overall mortality was 45.6% or 238 per million per year. Most fatalities were found already dead (171/300) and no trimodal distribution was verified. Only 1.5% of the patients found alive died outside hospital. Mean GOS was 4.4 +/- 1 (S.D.), median 5. CONCLUSION: A considerable amount of information on MIJ in FVG has been gathered, of both local and general interest because it can help to assess the local trauma system and also, given the relative scarcity of prospective, population-based information on MIJ, contribute to scientific research.