Development and Validation of Standardized Quality of Life Measures for Persons with IDD.

The implications of the individual quality of life (QoL) model of Schalock and Verdugo have made it the most cited QoL model in the field of disability. The QoL model is understood as a conceptual and applied framework for action that allows the materialization of the rights of persons with disabilities through the multidimensional assessment of these persons using QoL indicators, and the development of actions guided by these values and supported by evidence. The purpose of this work is to present the foundations of this model and offer a step-by-step guide to developing standardized QoL assessment instruments and providing evidence that supports their use to implement the model in practice. This paper explores relevant topics such as: (a) the need to identify critical population groups and contexts; (b) the identification of QoL indicators for said groups and contexts; (c) the development of items focused on the assessment of personal outcomes; (d) provision to the items of validity evidence based on content and pilot measure design and (e) validation process to gather evidence that supports the uses of the instrument. Last, a framework that allows using the evidence on personal outcomes as disaggregated and aggregated data at different levels of the social system is presented, thus highlighting the role of the model as a change agent regarding individuals, organizations and schools, and public policy.

What Factors Explain Family Quality of Life in Neurodegenerative Diseases?

Neurodegenerative diseases (NDs) are a major cause of dependency among elderly and affect the entire family unit. However, the literature has paid little attention to Family Quality of Life (FQOL) and focused on the patient and the main caregiver. The aim was to analyze the FQOL of people with NDs from a systemic perspective and to identify associated factors. A sample of 300 family caregivers from the cross-border region of Spain-Portugal completed the FQOLS - ND, which collected FQOL global and domain-level scores in terms of attainment and satisfaction. The highest rates of FQOL were obtained for the domain Family relations and the lowest for Support from services. The level of perceived barriers to social-health services emerged as the strongest predictor of global FQOL in all models. It is essential to reduce the obstacles to access social-health services and provide the family with resources according to their needs, especially in rural areas.

Listening to families with a person with neurodegenerative disease talk about their quality of life: integrating quantitative and qualitative approaches.

BACKGROUND: The diagnosis of a neurodegenerative disease (ND) produces profound changes in the quality of life of the affected families. Despite the vital importance of these processes, the scientific literature has addressed this topic almost exclusively relating to the main caregiver or using limited approaches. Thus, the main objective of this research is to achieve a deeper understanding of the quality of family life of people with a neurodegenerative disease, following a mixed-method approach that combines quantitative and qualitative methodology. METHODS: The quantitative instrument was the Spanish version of the Family Quality of Life Survey-Neurodegenerative Disease (FQOLS-ND), which was completed by 300 participating families. The qualitative methodology was used in two focus groups with family caregivers, with a total of 21 participants. RESULTS: On the one hand, confirmation of the dimensional structure of the scale in the focus groups was obtained and, on the other hand, the results of family quality of life in attainment and satisfaction were shown to be high for Family Relations and Careers and Planning for Careers and low for Support from Services and Leisure and Recreation. CONCLUSIONS: The results of this study, through the combination of quantitative and qualitative information, helps to identify key issues to optimize services that respond to the priority needs of families.

The predictors of proxy- and self-reported quality of life among individuals with acquired brain injury.

PURPOSE: Acquired brain injury (ABI) diminishes quality of life (QoL) of affected individuals and their families. Fortunately, new multidimensional instruments such as the calidad de vida en daño cerebral (CAVIDACE) scale are available. However, differences in self- and proxy-reported QoL remain unclear. Therefore, this study examined these differences and identified predictors of QoL among individuals with ABI. MATERIALS AND METHODS: This cross-sectional study comprised 393 adults with ABI (men: 60%; Mage= 54.65, SD = 14.51). Self-, family-, and professional-reported QoL were assessed using the CAVIDACE scale. Other personal and social variables were assessed as predictors of QoL. RESULTS: Professionals had the lowest QoL scores (M = 1.88, SD = 0.45), followed by family members (M = 2.02, SD = 0.44) and individuals with ABI (M = 2.10, SD = 0.43). Significant differences were found for almost all QoL domains, finding the highest correlations between family and professional proxy measures (r = 0.63). Hierarchical regression analysis revealed that sociodemographic, clinical, rehabilitation, personal, and social variables were significant predictors of QoL. CONCLUSIONS: It is necessary to use both self- and proxy-report measures of QoL. Additionally, the identification of the variables that impact QoL permits us to modify the interventions that are offered to these individuals accordingly.Implications for rehabilitationAcquired brain injury (ABI) causes significant levels of disability and affects several domains of functioning, which in turn can adversely affect quality of life (QoL).QoL is a multidimensional construct that is affected by numerous factors: sociodemographic, clinical, personal, social, etc; and also, with aspects related to the rehabilitation they receive after ABI.Rehabilitation programs should address the different domains of functioning that have been affected by ABI.Based on research findings about the QoL's predictors, modifications could be made in the rehabilitation process; paying special attention to the depressive- and anosognosia process, as well as the importance of promoting social support, community integration, and resilience.

Transcultural adaptation and psychometric properties of Family Quality of Life Survey for caregivers of people with neurodegenerative disease: a study of Spanish families who live in the rural Spain-Portugal cross-border.

BACKGROUND: Neurodegenerative diseases (NDs) are one of the main causes of disability and dependence that have a great impact both on the quality of life of people with disabilities and their families. A majority of people with NDs receive care and support from the family, but there is no tool in Spain with which to measure whole-family QOL. The aim of this study was the translation, cultural adaptation, and validation of the FQOLS-Dementia into Spanish to assess FQOL among family members of individuals with NDs who live in the Spain-Portugal cross-border area. METHOD: The Spanish version was translated and adapted following the international guidelines for cross-cultural adaptation tests. A sample of 300 family caregivers was interviewed, applying an adapted version of the Family Quality Survey (FQOLS-Dementia). Confirmatory factor analysis was performed to validate the factor structure, and convergent validity was examined with Pearson's correlation coefficients of the global FQOL with the domains. Internal consistency reliability was determined using Cronbach's alpha. RESULTS: The domain structure of the FQOLS-ND showed a good fit. In the convergent validity, it was found that the total score and the subscale domain scores were associated with the global FQOL score, except for the Values domain. Internal consistency of nine domain subscales was strong (α = 0.80 to 0.91), and excellent for the total FQOL (α = 0.85) and the global FQOL (α = 0.87). CONCLUSION: The FQOLS-ND presented good validity and reliability in caregiver families with individuals with ND, so its application shows its usefulness in detecting areas of improvement and intervention strategies for FQOL in the Spain-Portugal cross-border area.

Longitudinal study of quality of life in acquired brain injury: A self- and proxy-report evaluation / Estudio longitudinal de la calidad de vida en daño cerebral adquirido: autoinforme e informe de otros

After an acquired brain injury (ABI), the person remains with several impairments and disabilities that cause a decrease in his/her quality of life (QoL), which could change over time. The objective of the study was to analyse the evolution patterns of QoL in a sample of persons with ABI for one-year as well as the differences in proxy- and self-report versions of a QoL instrument. Method: The sample comprised 402 persons with ABI with ages ranging between 18 and 91 years, whom 36.20% had had the accident recently (i.e., three years or less). Patients, professionals and relatives responded at three evaluation points to the CAVIDACE scale, an ABI-specific QoL tool. Results: ANOVAs showed an improvement in QoL in the two follow-ups; the improvement was especially significant in the period between baseline and six months. The respondent factor did not interact with the evaluation time, but significant differences were found between respondents, with scores of patients higher than that for proxies. Finally, the QoL’s evolution interacts with the time elapsed since injury, showing significant improvements in the most recent group (i.e., three years or less). Conclusions: QoL must be considered from the earliest moments after ABI to obtain more significant improvements. (AU)

Después del daño cerebral adquirido (DCA), la persona permanece con secuelas y discapacidades severas que pueden causar una disminución de su calidad de vida (CV) variable a lo largo del tiempo. El objetivo de este estudio es analizar los cambios en la CV a lo largo de un año, así como las diferencias entre las versiones autoinforme y heteroinforme de un instrumento de CV. Método: La muestra estuvo compuesta por 402 personas con DCA, con edades entre 18 y 91 años, de quiénes el 36,20% había tenido el accidente recientemente (tres años o menos). Pacientes, profesionales y familiares respondieron en los tres momentos de evaluación a la escala CAVIDACE, un instrumento específico para DCA. Resultados: Los ANOVAs mostraron una mejoría en muchas de las dimensiones de CV en ambos seguimientos, especialmente significativa entre la línea base y los seis meses. Los pacientes puntuaron más alto que el resto de evaluadores, pero este factor no mostró interacción con el momento de evaluación. Finalmente, la evolución de la CV interactuó con el tiempo transcurrido desde el DCA, encontrándose mejorías en el grupo con menor recorrido. Conclusiones: La CV debe ser tenida en cuenta desde los primeros momentos tras el DCA para obtener mejorías más significativas. (AU)

Longitudinal study of quality of life in acquired brain injury: A self- and proxy-report evaluation.

After an acquired brain injury (ABI), the person remains with several impairments and disabilities that cause a decrease in his/her quality of life (QoL), which could change over time. The objective of the study was to analyse the evolution patterns of QoL in a sample of persons with ABI for one-year as well as the differences in proxy- and self-report versions of a QoL instrument. METHOD: The sample comprised 402 persons with ABI with ages ranging between 18 and 91 years, whom 36.20% had had the accident recently (i.e., three years or less). Patients, professionals and relatives responded at three evaluation points to the CAVIDACE scale, an ABI-specific QoL tool. RESULTS: ANOVAs showed an improvement in QoL in the two follow-ups; the improvement was especially significant in the period between baseline and six months. The respondent factor did not interact with the evaluation time, but significant differences were found between respondents, with scores of patients higher than that for proxies. Finally, the QoL's evolution interacts with the time elapsed since injury, showing significant improvements in the most recent group (i.e., three years or less). CONCLUSIONS: QoL must be considered from the earliest moments after ABI to obtain more significant improvements.

Después del daño cerebral adquirido (DCA), la persona permanece con secuelas y discapacidades severas que pueden causar una disminución de su calidad de vida (CV) variable a lo largo del tiempo. El objetivo de este estudio es analizar los cambios en la CV a lo largo de un año, así como las diferencias entre las versiones autoinforme y heteroinforme de un instrumento de CV. Método: La muestra estuvo compuesta por 402 personas con DCA, con edades entre 18 y 91 años, de quiénes el 36,20% había tenido el accidente recientemente (tres años o menos). Pacientes, profesionales y familiares respondieron en los tres momentos de evaluación a la escala CAVIDACE, un instrumento específico para DCA. Resultados: Los ANOVAs mostraron una mejoría en muchas de las dimensiones de CV en ambos seguimientos, especialmente significativa entre la línea base y los seis meses. Los pacientes puntuaron más alto que el resto de evaluadores, pero este factor no mostró interacción con el momento de evaluación. Finalmente, la evolución de la CV interactuó con el tiempo transcurrido desde el DCA, encontrándose mejorías en el grupo con menor recorrido. Conclusiones: La CV debe ser tenida en cuenta desde los primeros momentos tras el DCA para obtener mejorías más significativas.

Health-Related Quality of Life Trajectories across 10 Years after Moderate to Severe Traumatic Brain Injury in Norway.

Traumatic brain injury (TBI) has a long-lasting impact on participation and health-related quality of life (HRQL). We aimed to describe the physical and mental health trajectories and to identify their predictors across the first 10 years after TBI. A prospective longitudinal cohort of 97 individuals with moderate to severe TBI (age 16-55 years) in Norway were followed up at 1, 2, 5, and 10 years post-injury. Their socio-demographic and injury characteristics were recorded at baseline; their responses to the 36-Item Short Form Health Survey (SF-36) were collected at each follow-up. The Physical (PCS) and Mental Component Summary (MCS) scores were used as the outcome measures of physical and mental health. The predictors of the trajectories were described and examined using hierarchical linear modelling. The subscale scores showed a stable or increasing trend, but only the Role Physical and Role Emotional subscales showed clinically relevant positive changes from 1 to 10 years post-injury. Longer time, male gender, employment pre-injury, and shorter length of post-traumatic amnesia were significant predictors of better physical health trajectories; longer time, male gender, and employment pre-injury were significant predictors of better mental health trajectories. At-risk individuals may be targeted to receive rehabilitation interventions to improve their long-term quality of life outcomes.

Examining the Suitability of the List of Indicators Describing Age-Related Typical Support Needs.

The list of indicators is a form of training material used for the Supports Intensity Scale-Children's version (SIS-C). It is aimed at helping interviewers distinguishing between extraordinary and age-related typical support needs in children with intellectual and developmental disabilities (IDD) when implementing the SIS-C, and thus improve supports planning. The aim of this study is to adapt and test the list of indicators' content validity and rating scale's functioning in Spain. A total of 222 general education teachers reported their agreement with each indicator description using a 5-point rating scale. A total of 353 of 366 indicators showed evidence of content validity, whereas analyses on the rating scale highlighted the necessity of subsuming one of the scale categories within another. The need for developing research-based training materials to develop training programs on the use of the SIS-C to support decision-making concerning supports planning with students with IDD, the relevance of using the latest methodological approaches available when required, and future lines of research are discussed.

Predictive Factors of Self-Reported Quality of Life in Acquired Brain Injury: One-Year Follow-Up.

Background: The sequelae and disabilities that follow an acquired brain injury (ABI) may negatively affect quality of life (QoL). The main objective of the study is to describe the QoL after an ABI and identify the predictors of a better QoL. Methods: Prospective cohort study with follow-up measurement after one-year. The sample comprised 203 adults with ABIs (64% male) aged 18-86 years (M = 53.01, SD = 14.44). Stroke was the main etiology of the injury (55.7%), followed by a TBI (32.8%), and the average time since injury was 8 years (M = 8.25, SD = 7.83, range = 0.5-47.5). Patients assessed their QoL through the scale Calidad de Vida en Daño Cerebral (CAVIDACE self-reported version; "quality of life in brain injury" in English), an ABI-specific tool based on the eight-domain QoL model. Other variables measured were: depression, self-awareness, community integration, resilience, and social support at baseline and one-year follow-up. Results: The studied factors showed few significant changes over time. The analyses showed statistically significant differences in QoL scores in several sociodemographic (age, civil status, education, legal capacity, and dependency), injury-related (time, location, and comorbidity), rehabilitation, and personal-social variables (self-awareness, depression, social support, resilience, and community integration). The levels of dependency, depression, and satisfaction with social support were independent predictors of the total QoL score one-year follow-up. Conclusions: QoL after ABI depends on multiple elements that must be considered. There are factors such as satisfaction with social support, depression, community integration, and resilience that must be monitored throughout the rehabilitation process.

Toward a Better "Person-Environment Fit" through Items Calibration of the SIS-C.

The Supports Intensity Scale-Children's Version (SIS-C) is the only available tool to assess extraordinary support needs for children and adolescents with intellectual disability. In past years, several works have proclaimed the need for its ongoing improvement as a measurement instrument. To contribute to this line of research, the goal of this work is to analyze the reliability of the SIS-C and its usefulness to distinguish between different levels of intensity of support needs. To address this, 814 children and adolescents with intellectual disability (M = 11.13 years; SD = 3.41) were assessed using the SIS-C Spanish version. Item response theory analyses were conducted to estimate latent scores and assess measurement quality along the support needs continuum. The SIS-C items showed good overall discrimination and information values, and none showed problems that required their removal or modification. However, all the scales composing the SIS-C showed problems in discerning high levels of intensity of support needs, especially for children and adolescents with severe/profound intellectual disability. This ceiling effect may be an obstacle for both research and practice involving the SIS-C. Implications for research and practice are discussed, and future lines of research for improving the SIS-C are provided.

Adaptation and validation of the self-report version of the scale for measuring quality of life in people with acquired brain injury (CAVIDACE).

PURPOSE: The disability and resulting dependence after acquired brain injury (ABI) significantly reduces quality of life (QoL), making the correct assessment of QoL important. However, the instruments currently used to assess QoL are either reductionist, including only health-related aspects, or, like the CAVIDACE scale, are based on multidimensional models but ignore the individual's perspective. Therefore, the purpose of this study is to validate the self-report version of the CAVIDACE scale. METHOD: The sample consisted of 345 adults with ABI aged between 18 and 91 years (M = 54.83; SD = 14.91). The participants' QoL was evaluated by professionals and family members and by the participants themselves, using the original version of the CAVIDACE scale and an adapted self-report version. The following complementary variables were also measured: social support, depression, community integration, and resilience. RESULTS: The results supported the internal structure of the scale based on the theoretical model. According to this model, QoL is composed of eight first-order intercorrelated domains (RMSEA = 0.050, CFI = 0.891, TLI = 0.881). The internal consistency, determined by omega rank, was adequate in seven of the eight domains, ranging between 0.66 (PW) and 0.87 (SI). The convergent and discriminant validity of the scale was very good overall. CONCLUSIONS: The self-report version of the CAVIDACE was demonstrated to be a specific instrument with very good psychometric properties and is a very useful complement in the assessment of QoL in people with ABI.

Predictive factors of quality of life in acquired brain injury.

The sequelae and the disability and dependence that follow an acquired brain injury (ABI) may result in a significant reduction in the quality of life (QoL) of those affected. The objective was to assess the QoL of a sample of Spanish patients with an ABI and analyze the influence of certain sociodemographic and injury-related variables on their QoL. METHOD: The sample comprised 421 adults (60% male; M age = 53.12; SD = 14.87). Professionals and relatives assessed the patients' QoL through the CAVIDACE scale, an ABI-specific tool based on the eight-domain QoL model. RESULTS: Univariate analyses showed statistically significant differences in the QoL scores in several sociodemographic (age, civil status, education level, prior employment status, type of home, level of supports, loss of legal capacity, recognized dependence, and degree of dependence) and injury-related (time since the injury, location of the injury, and presence of post-traumatic amnesia) variables. The multiple linear regression showed that loss of legal capacity, time since the injury, prior employment status, location of the injury, and degree of dependence were significant QoL predictors. CONCLUSIONS: These findings provide knowledge for the development of programs aimed at reducing the negative impact of ABI on QoL.

ANTECEDENTES/OBJETIVO: Las secuelas, discapacidad y dependencia que siguen al daño cerebral adquirido (DCA) pueden resultar en una reducción significativa en la calidad de vida (CV) de los afectados. El objetivo fue evaluar la CV de una muestra española con DCA y analizar la influencia de variables sociodemográficas y relacionadas con la lesión en su CV. Método: La muestra comprendió 421 adultos (60% hombre; M edad = 53,12; DT = 14,87). Profesionales y familiares evaluaron la CV de los pacientes a través de la escala CAVIDACE, una herramienta específica para DCA basada en el modelo de CV de ocho dimensiones. Resultados: Los análisis univariantes mostraron diferencias estadísticamente significativas en las puntuaciones de CV en variables sociodemográficas (edad, estado civil, nivel educativo, situación de empleo previa, tipo de hogar, nivel de apoyos, incapacidad legal, situación de dependencia reconocida y su nivel) y relacionadas con la lesión (tiempo desde la lesión, localización de la lesión y presencia de amnesia postraumática). El análisis de regresión múltiple mostró la incapacidad legal, el tiempo desde la lesión, la situación de empleo previa, la localización de la lesión y el nivel de dependencia como predictores significativos de CV. Conclusiones: Estos hallazgos proporcionan conocimiento para el desarrollo de programas dirigidos a reducir el impacto negativo del DCA en la CV.

Predictive factors of quality of life in acquired brain injury / Factores predictores de calidad de vida en adultos con daño cerebral adquirido

Background/Objective: The sequelae and the disability and dependence that follow an acquired brain injury (ABI) may result in a significant reduction in the quality of life (QoL) of those affected. The objective was to assess the QoL of a sample of Spanish patients with an ABI and analyze the influence of certain sociodemographic and injury-related variables on their QoL. Method: The sample comprised 421 adults (60% male; Mage = 53.12; SD = 14.87). Professionals and relatives assessed the patients’ QoL through the CAVIDACE scale, an ABI-specific tool based on the eight-domain QoL model. Results: Univariate analyses showed statistically significant differences in the QoL scores in several sociodemographic (age, civil status, education level, prior employment status, type of home, level of supports, loss of legal capacity, recognized dependence, and degree of dependence) and injury-related (time since the injury, location of the injury, and presence of post-traumatic amnesia) variables. The multiple linear regression showed that loss of legal capacity, time since the injury, prior employment status, location of the injury, and degree of dependence were significant QoL predictors. Conclusions: These findings provide knowledge for the development of programs aimed at reducing the negative impact of ABI on QoL

Antecedentes/Objetivo: Las secuelas, discapacidad y dependencia que siguen al daño cerebral adquirido (DCA) pueden resultar en una reducción significativa en la calidad de vida (CV) de los afectados. El objetivo fue evaluar la CV de una muestra española con DCA y analizar la influencia de variables sociodemográficas y relacionadas con la lesión en su CV. Método: La muestra comprendió 421 adultos (60% hombre; Medad = 53,12; DT = 14,87). Profesionales y familiares evaluaron la CV de los pacientes a través de la escala CAVIDACE, una herramienta específica para DCA basada en el modelo de CV de ocho dimensiones. Resultados: Los análisis univariantes mostraron diferencias estadísticamente significativas en las puntuaciones de CV en variables sociodemográficas (edad, estado civil, nivel educativo, situación de empleo previa, tipo de hogar, nivel de apoyos, incapacidad legal, situación de dependencia reconocida y su nivel) y relacionadas con la lesión (tiempo desde la lesión, localización de la lesión y presencia de amnesia postraumática). El análisis de regresión múltiple mostró la incapacidad legal, el tiempo desde la lesión, la situación de empleo previa, la localización de la lesión y el nivel de dependencia como predictores significativos de CV. Conclusiones: Estos hallazgos proporcionan conocimiento para el desarrollo de programas dirigidos a reducir el impacto negativo del DCA en la CV