Reframing QoL assessment in persons with neurodevelopmental disorders

AbstractThe paper reviews the international literature on quality of life (QoL) for persons withneurodevelopmental disorders (NDD) in order to define the theoretical frame for optimalassessment. The application of the QoL approach to assessment procedures shouldbe based on three main aspects: shared QoL, personal QoL and family QoL. The first aspectrefers to characteristics of individual life that are shared with other people. The secondaspect proceeds from the fact that each individual has a changing set of personal attributesthat determine the subjective experience of life. In the third aspect the previoustwo are applied to the family that includes a person with NDD. Disability impacts thewhole family and the determination of appropriate conceptualization of family outcomesrequires an understanding of the impact of members with a disability on family QoL. Atany level, it seems best to take a comprehensive approach to assessing QoL, integratingsubjective and objective aspects, self-reports and hetero-evaluations. The QoL approachis above all a way to explore the rich intricacies of personal quality of life. Such assessmentmay be used effectively with people with NDD, independently from the severityof their functioning impairment. Individuals with profound ID may express their innerstates through consistent behavioural repertoires, which can be discerned by personsclosest to them and validated by more independent others. Attention must be paid in usingnon-generic instruments, such as those that measure health-related QoL. Althoughthey do focus on the individual person, they still support a theoretical perspective ofQoL that has not departed significantly from the traditional medical approach. Currentlyavailable generic tools, although they have some common conceptual and evaluationcharacteristics, still show considerable differences in the areas to be included in “sharedQoL”, the dimensions used to evaluate “Individual QoL”, and the role attributed toindicators 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

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

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

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

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.This study has been supported by the EC contract number SP24-CT-2004-513708 (MHADIE); by the Spanish Ministry of Health ISCIII FEDER (PI 061579, PI 051542, PI050036, and PI050206), CIBERSAM, CIBERESP, RETICS RD06/0011 (REM-TAP) and the Catalan Government DURSI-GENCAT (2005-SGR-00491), and AGAUR (2008FIC 00335)