HAE-AS: A Specific Disease Activity Scale for Hereditary Angioedema With C1-Inhibitor Deficiency.

BACKGROUND AND OBJECTIVE: The activity of hereditary angioedema due to C1-inhibitor deficiency (C1-INH-HAE) varies between patients and within individual patients. Objective: This study aims to develop a disease activity scale for C1-INH-HAE (HAE-AS) with sound measurement properties. METHODS: Eleven countries participated in a prospective multicenter cohort study. A clinical questionnaire was self-completed by 290 adult patients with C1-INH-HAE. Patients also completed 2 quality of life scales, the SF-36v2 and the HAE-QoL. Rasch analysis and classic psychometric methods were used to preselect a series of clinical items: number of attacks by location and number of treated attacks, emergency room visits, psychological/psychiatric treatment, missed school/workdays in the previous 6 months; general health; and impairment in everyday work/activities due to pain. RESULTS: The mean (SD) age was 41.5 (14.7; range, 18-84) years, and 69% were females. The final 12-item Rasch model showed that the HAE-AS had satisfactory reliability (person separation index, 0.748), local item independence, unidimensionality, and no item bias by age or sex. The HAE-AS provided scores in a linear measure, with a mean of 10.66 (3.92; range, 0-30). Further analysis with classic psychometric methods indicated that the HAE-AS linear measure presented moderate-to-high convergent validity with quality of life scales (SF-36v2: physical component, r=-0.33; mental component, 0.555; HAE-QoL, -0.61), and good discriminative validity by age, sex, and disease severity (P<.05). CONCLUSIONS: The HAE-AS is a short, valid, reliable, and psychometrically sound measure of the activity of C1-INH-HAE that could prove useful for research studies.

HAE-AS: A Specific Disease Activity Scale for Hereditary Angioedema With C1-Inhibitor Deficiency

Background: The activity of hereditary angioedema due to C1-inhibitor deficiency (C1-INH-HAE) varies between patients and within individual patients. Objective: This study aims to develop a disease activity scale for C1-INH-HAE (HAE-AS) with sound measurement properties. Methods: Eleven countries participated in a prospective multicenter cohort study. A clinical questionnaire was self-completed by 290 adult patients with C1-INH-HAE. Patients also completed 2 quality of life scales, the SF-36v2 and the HAE-QoL. Rasch analysis and classic psychometric methods were used to preselect a series of clinical items: number of attacks by location and number of treated attacks, emergency room visits, psychological/psychiatric treatment, missed school/workdays in the previous 6 months; general health; and impairment in everyday work/activities due to pain. Results: The mean (SD) age was 41.5 (14.7; range, 18-84) years, and 69% were females. The final 12-item Rasch model showed that the HAE-AS had satisfactory reliability (person separation index, 0.748), local item independence, unidimensionality, and no item bias by age or sex. The HAE-AS provided scores in a linear measure, with a mean of 10.66 (3.92; range, 0-30). Further analysis with classic psychometric methods indicated that the HAE-AS linear measure presented moderate-to-high convergent validity with quality of life scales (SF-36v2: physical component, r=–0.33; mental component, 0.555; HAE-QoL, –0.61), and good discriminative validity by age, sex, and disease severity (P<.05). Conclusions: The HAE-AS is a short, valid, reliable, and psychometrically sound measure of the activity of C1-INH-HAE that could prove useful for research studies (AU)

The WHO active ageing pillars and its association with survival: Findings from a population-based study in Spain.

BACKGROUND: The World Health Organization's active ageing model is based on the optimisation of four key "pillars": health, lifelong learning, participation and security. It provides older people with a policy framework to develop their potential for well-being, which in turn, may facilitate longevity. We sought to assess the effect of active ageing on longer life expectancy by: i) operationalising the WHO active ageing framework, ii) testing the validity of the factors obtained by analysing the relationships between the pillars, and iii) exploring the impact of active ageing on survival through the health pillar. METHODS: Based on data from a sample of 801 community-dwelling older adults, we operationalised the active ageing model by taking each pillar as an individual construct using principal component analysis. The interrelationship between components and their association with survival was analysed using multiple regression models. RESULTS: A three-factor structure was obtained for each pillar, except for lifelong learning with a single component. After adjustment for age, gender and marital status, survival was only significantly associated with the physical component of health (HR = 0.66; 95% CI = 0.47-0.93; p = 0.018). In turn, this component was loaded with representative variables of comorbidity and functionality, cognitive status and lifestyles, and correlated with components of lifelong learning, social activities and institutional support. CONCLUSION: According to how the variables clustered into the components and how the components intertwined, results suggest that the variables loading on the biomedical component of the health pillar (e.g. cognitive function, health conditions or pain), may play a part on survival chances.

Lights4Violence: a quasi-experimental educational intervention in six European countries to promote positive relationships among adolescents.

BACKGROUND: Preventing intimate partner violence or dating violence (DV) among adolescents is a public health priority due to its magnitude and damaging short and long-term consequences for adolescent and adult health. In our study protocol, we complement prior experiences in DV prevention by promoting protective factors (or assets) against gender violence such as communication skills, empathy and problem-solving capability through "Cinema Voice", a participatory educational intervention based on adolescents' strengths to tackle DV. METHODS/DESIGN: A longitudinal quasi-experimental educational intervention addressed to boys and girls ages 13-17 years, enrolled in secondary education schools in Alicante (Spain), Rome (Italy), Cardiff (UK), Iasi (Romania), Poznan (Poland) and Matosinhos (Portugal). Both process and results evaluations will be carried out with 100-120 intervention and 120-150 control group students per city at three time periods: before, after and 6 months after the implementation of the following interventions: 1) Training seminar with teachers to promote knowledge and skills on the core issues of intervention; 2) Workshops with intervention groups, where participants produce their own digital content presenting their perspective on DV; and 3) Short film exhibitions with participants, their families, authorities and other stakeholders with the objective of share the results and engage the community. Outcome measures are self-perceived social support, machismo, sexism, tolerance towards gender violence, social problem-solving and assertiveness as well as involvement in bullying/cyberbullying. Other socio-demographic, attitudes and violence-related co-variables were also included. DISCUSSION: This study may provide relevant information about the effectiveness of educational interventions that combine a positive youth development framework with educational awareness about the importance of achieving gender equality and preventing and combating gender violence. To our knowledge, this is the first study that involves six European countries in an educational intervention to promote violence protective assets among enrolled adolescents in secondary schools. This study may provide the needed tools to replicate the experience in other contexts and other countries. TRIAL REGISTRATION: Clinicaltrials.gov: NCT03411564 . Unique Protocol ID: 776905. Date registered: 18-01-2018.

Chronic musculoskeletal pain in European older adults: Cross-national and gender differences.

BACKGROUND: In an ageing Europe, chronic pain is a major public health problem, but robust epidemiological data are scarce. This study aimed to analyse the prevalence of and factors associated with chronic musculoskeletal pain by gender in older adults of 14 European countries. METHODS: A cross-sectional study was performed from wave 5 of the Survey of Health, Ageing and Retirement in Europe (SHARE). The study included people ≥50 years residing in Austria, Belgium, Czech Republic, Denmark, Estonia, France, Germany, Italy, Luxembourg, the Netherlands, Slovenia, Spain, Sweden and Switzerland. Chronic pain was defined as being bothered by joint and/or back pain for the previous 6 months. Multivariable Poisson regression models with robust variance were performed to analyse prevalence ratio by covariates, stratified by sex. RESULTS: A total of 61,157 participants were included. Overall prevalence of chronic musculoskeletal pain was 35.7% (28.8-31.7), ranging from 18.6% (17.1-20.1) for Switzerland to 45.6% (43.3-47.8) for France. Prevalence was higher in women than in men: 41.3% (40.2-42.4) versus 29.1% (28.0-30.3). Chronic musculoskeletal pain was lower in men aged >75 years (PR = 0.82; 0.72-0.92) than the younger (50-59) group. Separated/divorced status presented opposite effects among men (PR = 0.85; 0.76-0.96) and women (PR = 1.12; 1.03-1.21) compared with married, and unemployment was a significant factor in men (PR = 1.21; 95% CI 1.02-1.43) compared with employed. CONCLUSIONS: Musculoskeletal pain in older European adults is very frequent, especially in women, with large differences depending on the country of residence. Health policy makers should prioritize strategies aimed at improving the prevention and management of chronic musculoskeletal pain in Europe. SIGNIFICANCE: This study provides epidemiological data of chronic musculoskeletal pain in older adults. Reported differences contribute to highlight the relevance of considering a gender perspective in chronic musculoskeletal pain research. Cross-national comparison also offers a map of differences that improves the knowledge of this chronic condition in Europe.

Hierarchical nature of activities of daily living in the Spanish Disability Survey.

Many studies have addressed the issue of dimensionality in activities of daily living (ADL) and its hierarchy, with contradictory results. This paper aims to study the unidimensional structure and the hierarchy of ADL in the Spanish Disability Survey. We analysed a sample of 8381 people aged 65 and over with at least one disability and receiving personal help with one of them. The following Rasch model properties were studied in 14 items enquiring about basic and instrumental ADL: fit to the model, reliability, unidimensionality, local independency between items and differential item functioning (DIF) by gender, age and proxy. The unidimensionality of the scale was confirmed. The final analysis of eight items showed a satisfactory fit, good reliability, local independency, unidimensionality and no DIF by age. The disability linear measure showed significant differences by gender and age. The obtained disability scale is a simple and reliable measure, and it suggests a hierarchical order of ADL and predicts a schedule of functional impairment in older adults. Rating the disability of older community-dwelling people has a predictive value that policy makers might find useful in service planning.

Relationship between the MDS-UPDRS domains and the health-related quality of life of Parkinson's disease patients.

BACKGROUND AND PURPOSE: The Movement Disorder Society sponsored version of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS) is a comprehensive instrument for assessing Parkinson's disease (PD). The present study was aimed at determining the relationships between MDS-UPDRS components and health-related quality of life (HRQoL) evaluations in PD patients. METHODS: An international, multicenter, cross-sectional study was carried out of 435 PD patients assessed with the MDS-UPDRS, Hoehn and Yahr (HY), Clinical Impression Severity for PD, EQ-5D and PD Questionnaire - eight items (PDQ-8). Spearman's rank correlation coefficients, exploratory factor analysis and multiple linear regression models (dependent variables EQ-5D and PDQ-8) were performed. RESULTS: The participants' age was 66.71 ± 10.32 years (51.5% men). PD duration was 8.52 ± 6.14, and median HY was 2 (range 1-5). The correlation between the EQ-5D index and the MDS-UPDRS ranged from -0.46 (Part IV) to -0.72 (Part II) and for the PDQ-8 index from 0.47 (Part III) to 0.74 (Part II). In multiple regression models with the MDS-UPDRS domains as independent variables, the main determinant for both the EQ-5D index and the PDQ-8 was Part II followed by Part I. After factorial grouping of the cardinal PD manifestations embedded in the MDS-UPDRS Parts III and IV for inclusion into multiple regression models, a factor formed by M-EDL, nM-EDL and fluctuations was the main determinant for both the EQ-5D and PDQ-8 indexes. CONCLUSIONS: The MDS-UPDRS component most tightly related with the HRQoL measures was a combination of motor and non-motor experiences of daily living.

Designing a new scale to measure anxiety symptoms in Parkinson's disease: item selection based on canonical correlation analysis.

BACKGROUND AND PURPOSE: The lack of appropriate measures has hindered the research on anxiety syndromes in Parkinson's disease (PD). The objective of the present cross-sectional, international study was to identify shared elements and grouping of components from anxiety scales as a basis for designing a new scale for use in PD. METHODS: For this purpose, 342 consecutive PD patients were assessed by means of the Mini International Neuropsychiatric Inventory (depression and anxiety sections), the Clinical Global Impression of severity of the anxiety symptoms, the Hamilton Anxiety Rating Scale (HARS), the Neuropsychiatric Inventory (section E), the Beck Anxiety Inventory (BAI) and the Anxiety subscale of the Hospital Anxiety and Depression Scale (HADS-A). RESULTS: As the HADS-A showed a weak correlation with the HARS and BAI, it was not considered for more analyses. HARS and BAI exploratory factor analysis identified nine factors (62% of the variance), with only two of them combining items from both scales. Therefore, a canonical correlation model (a method to identify relations between components of two groups of variables) was built and it showed four factors grouping items from both scales: the first factor corresponded to 'generalized anxiety'; the second factor included muscular, sensory and autonomic 'non-specific somatic symptoms'; the third factor was dominated by 'respiratory symptoms'; and the fourth factor included 'cardiovascular symptoms'. CONCLUSIONS: BAI is heavily focused on panic symptoms, whilst HARS is more focused towards generalized anxiety symptoms. The new scale should include additional components in order to assess both episodic and persistent anxiety as well as items for evaluation of avoidance behaviour.

Psychometric properties of the International Wellbeing Index in community-dwelling older adults.

BACKGROUND: This is the first study to analyze the psychometric properties of the International Wellbeing Index (IWI), which comprises the Personal Wellbeing Index (PWI) and National Wellbeing Index (NWI), among community-dwelling older adults. METHODS: The IWI was applied to 1106 community-dwelling adults aged 60 years and over. The sample was additionally assessed using scales for comorbidity, disability, mood, general orientation to life, social support, health-related quality of life, and two questions assessing satisfaction with life as a whole and with life in Spain. The PWI and NWI were separately analyzed for acceptability, internal consistency, convergent and discriminative validity, and precision. Linear regression analyses of the PWI and the NWI were also conducted. RESULTS: Mean scores were 71.0 ± 13.5 for the PWI and 49.5 ± 14.4 for the NWI. No floor or ceiling effects were detected. Cronbach's α was 0.88 for the PWI and 0.92 for the NWI. Factor analysis identified two factors in the IWI, and one factor in the PWI and NWI respectively. The PWI showed a correlation of 0.50 with the "satisfaction with life as a whole" item, and the NWI showed a correlation of 0.73 with the "satisfaction with life in Spain" item. There were significant differences in scores: in the PWI, according to gender, age, social support, education and depression; and in the NWI, according to education and depression. The regression model identified psychosocial, health and functional factors as determinants of the PWI (explained variance: 46.8%). CONCLUSIONS: The IWI displays good acceptability and is a consistent, valid and precise measure of global quality of life in older adults.

Assessing autonomic symptoms of Parkinson's disease with the SCOPA-AUT: a new perspective from Rasch analysis.

BACKGROUND: The Scale for Outcomes in Parkinson's disease (PD) for Autonomic Symptoms (SCOPA-AUT) is a specific scale to assess autonomic dysfunction in PD patients. It was developed and validated under the classic test theory approach. This study sought to test whether the SCOPA-AUT meets item response theory standards for reliability, internal construct validity, response category ordering, and differential item functioning by gender and age group. METHOD: The Rasch measurement model was applied to a sample of 385 PD patients. RESULTS: Model fit was obtained after the response categories were rescored and item 10-Incomplete emptying deleted because of redundancy. Person separation index, a reliability measure, was 0.82. All but two items (2-Sialorrhea and 13-Nocturia) were free of gender- and age-related bias. The strict tests of unidimensionality were met, indicating the validity of the total sumscore. Scale targeting suggested the need for items representing milder autonomic symptoms. CONCLUSIONS: Suggestions for improving the SCOPA-AUT include a shorter scale with a simpler response scheme and a combination of sexual items for men and women. The resulting SCOPA-AUT is a reliable scale, with good internal construct validity, providing Rasch transformed results on a linear metric scale.

Independent validation of the scales for outcomes in Parkinson's disease-autonomic (SCOPA-AUT).

BACKGROUND AND PURPOSE: Autonomic dysfunction is common in Parkinson's disease (PD) and causes a great impact in health-related quality of life (HRQL) and functional status of patients. This study is the first independent validation of the Scales for Outcomes in PD-Autonomic (SCOPA-AUT). METHODS: In an observational, cross-sectional study (ELEP Study), 387 PD patients were assessed using, in addition to the SCOPA-AUT, the Hoehn and Yahr staging, SCOPA-Motor, SCOPA-Cognition, Cumulative Illness Rating Scale-Geriatrics, modified Parkinson Psychosis Rating Scale, Clinical Impression of Severity Index for PD, Hospital Anxiety and Depression Scale, SCOPA-Sleep, SCOPA-Psychosocial, pain and fatigue visual analogue scales, and EQ-5D. SCOPA-AUT acceptability, internal consistency, construct validity, and precision were explored. RESULTS: Data quality was satisfactory (97%). SCOPA-AUT total score did not show floor or ceiling effect, and skewness was 0.40. Cronbach's alpha coefficients ranged from 0.64 (Cardiovascular and Thermorregulatory subscales) to 0.95 (Sexual dysfunction, women). Item homogeneity index was low (0.24) for Gastrointestinal subscale. Factor analysis identified eight factors for men (68% of the variance) and seven factors for women (65% of the variance). SCOPA-AUT correlated at a high level with specific HRQL and functional measures (r(S) = 0.52-0.56). SCOPA-AUT scores were higher for older patients, for more advanced disease, and for patients treated only with levodopa (Kruskal-Wallis test, P < 0.01). Standard error of measurement for SCOPA-AUT subscales was 0.81 (sexual, men) - 2.26 (gastrointestinal). CONCLUSIONS: Despite its heterogeneous content, which determines some weaknesses in the psychometric attributes of its subscales, SCOPA-AUT is an acceptable, consistent, valid and precise scale.

Should the SCOPA-COG be modified? A Rasch analysis perspective.

BACKGROUND AND PURPOSE: The SCales for Outcomes in PArkinson's disease-Cognition (SCOPA-COG) is a specific measure of cognitive function for Parkinson's disease (PD) patients. Previous studies, under the frame of the classic test theory, indicate satisfactory psychometric properties. The Rasch model, an item response theory approach, provides new information about the scale, as well as results in a linear scale. This study aims at analysing the SCOPA-COG according to the Rasch model and, on the basis of results, suggesting modification to the SCOPA-COG. METHOD: Fit to the Rasch model was analysed using a sample of 384 PD patients. RESULTS: A good fit was obtained after rescoring for disordered thresholds. The person separation index, a reliability measure, was 0.83. Differential item functioning was observed by age for three items and by gender for one item. CONCLUSIONS: The SCOPA-COG is a unidimensional measure of global cognitive function in PD patients, with good scale targeting and no empirical evidence for use of the subscale scores. Its adequate reliability and internal construct validity were supported. The SCOPA-COG, with the proposed scoring scheme, generates true linear interval scores.

[The current state of the art concerning quality of life in Parkinson's disease: II. Determining and associated factors]. / Situación actual del conocimiento sobre calidad de vida en la enfermedad de Parkinson: II. Determinantes y factores asociados.

INTRODUCTION: Health-related quality of life (HRQL) in Parkinson's disease (PD) is an area that is receiving a growing amount of interest as the new biopsychosocial model of medicine is adopted. AIM. This paper is the second part of a review of the current state of the art concerning HRQL in PD and focuses on its main determining and associated factors. DEVELOPMENT: A total of 56 studies are reviewed and the determining factors are grouped according to different variables, which may be disease-related (including motor and non-motor symptoms), sociodemographic (level of schooling, economic factors, gender and others), psychological and related to mental status (depression, anxiety, cognitive impairment, physician-patient relationship and others), and disability. The following characteristics of the studies were taken into account: the type of design (longitudinal or cross-sectional), the instrument used for measuring the HRQL (generic or specific), the statistical method employed (univariate or multivariate) and the sample size. CONCLUSIONS: Most of the studies are cross-sectional and the majority use the 39-item Parkinson's Disease Questionnaire as a measure of HRQL with multivariate data analysis. The three most important factors determining HRQL in PD are depression, the stage of the disease and the time elapsed since onset of the disease. Nevertheless, the preferred methodology does not allow for causal inferences, due to the scarcity of longitudinal studies.

Situación actual del conocimiento sobre calidad de vida en la enfermedad de Parkinson: I. Instrumentos, estudios comparativos y tratamientos / The current state of the art concerning queality of life in parkinson´s disease: I. Instruments, comparative studies and treatments

Resumen. Introducción. En la última década, ha aumentado gradualmente el interés por el estudio del impacto de la enfermedad de Parkinson (EP) en la calidad de vida relacionada con la salud (CVRS) de los pacientes. Se han desarrollado instrumentos específicos para su medición que, junto con medidas de CVRS genéricas, se aplican frecuentemente en la actualidad en los ensayos clínicos y otros estudios. Esta revisión forma parte de una serie de dos artículos cuyo objetivo es describir la situación actual de los estudios de la CVRS en la EP y detectar lagunas en el conocimiento que puedan orientar a los investigadores para futuros proyectos. Objetivo. Revisar los conceptos, instrumentos, estudios comparativos y efecto de los tratamientos sobre la CVRS de los pacientes con EP. Desarrollo. Se presentan conceptos fundamentales sobre CVRS y se describen los instrumentos para su medición. También se describen los principales hallazgos en cuanto a estudios comparativos sobre la CVRS de pacientes con EP. Finalmente, se revisa el efecto de los tratamientos sobre la CVRS, incluyendo las terapias alternativas. Conclusiones. A pesar de los grandes avances en este terreno, se requieren más estudios con metodología rigurosa y aportación de datos longitudinales (AU)

Summary. Introduction. Over the last decade there has been growing interest in the study of the impact of Parkinson’s disease (PD) on the health-related quality of life (HRQL) of patients. Specific instruments have been developed to measure it and today these are frequently applied, together with generic measurements of HRQL, in clinical trials and other studies. This review is part of a series of two papers, the aim of which is to describe the current situation of studies on HRQL in PD and to detect areas in which knowledge is lacking, as a possible guide to researchers in future projects. Aim. To review the concepts, instruments, comparative studies and the effect of treatments on the HRQL of patients with PD. Development. The fundamental concepts of HRQL and the instruments used to measure it are described. The main findings as regards comparative studies about the HRQL of patients with PD are also outlined. Finally, the article examines the effect of treatments on HRQL, including alternative therapies. Conclusions. Despite the significant progress being made in this field, further studies with a rigorous methodology and longitudinal data are needed

Situación actual del conocimiento sobre calidad de vida en la enfermedad de Parkinson: II. Determinantes y factores asociados / The current state of the art concerning quality of life in parkinson´s disease: II determining and associated factors

Resumen. Introducción. La calidad de vida relacionada con la salud (CVRS) en la enfermedad de Parkinson (EP) es un tema al que se dedica un interés creciente, a medida que se adopta el nuevo modelo biopsicosocial de la medicina. Objetivo. Este artículo es la segunda parte de una revisión sobre el estado actual del conocimiento sobre la CVRS en la EP, que se centra en sus principales determinantes y factores asociados. Desarrollo. Se revisan 56 estudios y se agrupan los determinantes en variables relativas a la enfermedad (incluyendo síntomas motores y no motores), sociodemográficas (nivel de educación, factores económicos, género y otras), psicológicas y de estado mental (depresión, ansiedad, deterioro cognitivo, relación médicopaciente y otras), y de discapacidad. Se tomaron en cuenta las siguientes características de los estudios: el tipo de diseño (longitudinal o transversal), el instrumento para medir la CVRS (genérico o específico), el método estadístico (univariante o multivariante) y el tamaño muestral. Conclusiones. La mayoría de los estudios son transversales y utilizan mayoritariamente el Parkinson’s Disease Questionnaire, versión de 39 ítems, como medida de CVRS con un análisis de datos multivariante. Los tres determinantes de la CVSR en la EP más importantes son la depresión, el estadio de la enfermedad y la duración de enfermedad. Sin embargo, la metodología preferentemente utilizada no permite inferencias causales, debido a la escasez de estudios longitudinales (AU)

Summary. Introduction. Health-related quality of life (HRQL) in Parkinson’s disease (PD) is an area that is receiving a growing amount of interest as the new biopsychosocial model of medicine is adopted. Aim. This paper is the second part of a review of the current state of the art concerning HRQL in PD and focuses on its main determining and associated factors. Development. A total of 56 studies are reviewed and the determining factors are grouped according to different variables, which may be disease-related (including motor and non-motor symptoms), sociodemographic (level of schooling, economic factors, gender and others), psychological and related to mental status (depression, anxiety, cognitive impairment, physicianpatient relationship and others), and disability. The following characteristics of the studies were taken into account: the type of design (longitudinal or cross-sectional), the instrument used for measuring the HRQL (generic or specific), the statistical method employed (univariate or multivariate) and the sample size. Conclusions. Most of the studies are cross-sectional and the majority use the 39-item Parkinson’s Disease Questionnaire as a measure of HRQL with multivariate data analysis. The three most important factors determining HRQL in PD are depression, the stage of the disease and the time elapsed since onset of the disease. Nevertheless, the preferred methodology does not allow for causal inferences, due to the scarcity of longitudinal studies (AU)

[The current state of the art concerning quality of life in Parkinson's disease: I. Instruments, comparative studies and treatments]. / Situación actual del conocimiento sobre calidad de vida en la enfermedad de Parkinson: I. Instrumentos, estudios comparativos y tratamientos.

INTRODUCTION: Over the last decade there has been growing interest in the study of the impact of Parkinson's disease (PD) on the health-related quality of life (HRQL) of patients. Specific instruments have been developed to measure it and today these are frequently applied, together with generic measurements of HRQL, in clinical trials and other studies. This review is part of a series of two papers, the aim of which is to describe the current situation of studies on HRQL in PD and to detect areas in which knowledge is lacking, as a possible guide to researchers in future projects. AIM: To review the concepts, instruments, comparative studies and the effect of treatments on the HRQL of patients with PD. DEVELOPMENT: The fundamental concepts of HRQL and the instruments used to measure it are described. The main findings as regards comparative studies about the HRQL of patients with PD are also outlined. Finally, the article examines the effect of treatments on HRQL, including alternative therapies. CONCLUSIONS: Despite the significant progress being made in this field, further studies with a rigorous methodology and longitudinal data are needed.

[Psychometric attributes of the Scales for Outcomes in Parkinson's Disease-Psychosocial (SCOPA-PS): validation in Spain and review]. / Atributos psicométricos de la Scales for Outcomes in Parkinson's Disease-Psychosocial (SCOPA-PS): validación en España y revisión.

AIMS: To evaluate the psychometric attributes of the Scales for Outcomes in Parkinson's Disease-Psychosocial (SCOPA-PS) in Spain and to compare them with previous studies. PATIENTS AND METHODS: We performed a multi-centre, cross-sectional study of 387 patients with Parkinson's disease (PD), 70% of whom were in Hoehn and Yahr (HY) stages 2 or 3, with a mean age of 65.8 +/- 11.1 years and 8.1 +/- 6 years' progression. The following measures were applied: SCOPA-Motor, SCOPA-Cognition, modified Parkinson's Psychosis Rating Scale, Clinical Impression of Severity Index for Parkinson's Disease (CISI-PD), Cumulative Illness Rating Scale-Geriatrics, SCOPA-Autonomic, SCOPA-Sleep, Hospital Anxiety and Depression Scale (HADS), Fatigue and Pain Visual Analogue Scales, EQ-5D and SCOPA-PS. Acceptability, internal consistence, dimensionality, construct validity and precision of the SCOPA-PS were analysed. RESULTS: The SCOPA-PS summary index displayed no ceiling or floor effect. Internal consistence was satisfactory (alpha = 0.85; item-total correlation => 0.39). Two factors were identified (53.5% of the variance). The SCOPA-PS was highly correlated (r(S) => 0.5) with the HADS, SCOPA-Motor, SCOPA-Automatic and EQ-5D index, and moderately so (r(S) = 0.35-0.49) with CISI-PD, fatigue and HY. The SCOPA-PS discriminated significantly between patients grouped according to HY stages, levels of severity of the CISI-PD, age groups and length of time with PD. The standard error of the measure was 7.24 +/- 18.7. As a whole, these findings are in agreement with previous studies. CONCLUSIONS: The SCOPA-PS is a scale with a satisfactory degree of acceptability, and it is consistent, valid and precise for evaluating the psychosocial impact of PD.

[Psychometric attributes of Scales for Outcomes in Parkinson's Disease-Cognition (SCOPA-Cog), Castilian language]. / Atributos psicométricos de la Scales for Outcomes in Parkinson's Disease-Cognition (SCOPA-Cog), versión en Castellano.

AIM: To test the psychometric attributes of the Scales for Outcomes in Parkinson's Disease-Cognition (SCOPA-Cog), in Castilian language. PATIENTS AND METHODS: It is a multicenter, cross-sectional study carried out on 387 Parkinson's disease (PD) patients. They were 70% in Hoehn and Yahr stages 2 or 3; their mean age was 65,8 years and they underwent the disease for 8,1 years. Rater-based -SCOPA-Motor, modified Parkinson's Psychosis Rating Scale, Clinical Impression of Severity Index for PD (CISI-PD), Cumulative Illness Rating Scale-Geriatrics- and self-administered -SCOPA-Autonomic, SCOPA-Sleep, SCOPA-Psychosocial, Hospital Anxiety and Depression Scale, EuroQoL- assessments were applied. For SCOPA-Cog, the following psychometric attributes were analysed: acceptability, internal consistency, dimensionality, construct validity, and precision. A cut-off point for dementia and SCOPA-Cog score's predictors were explored. RESULTS: SCOPA-Cog was free from floor and ceiling effect. The internal consistency was satisfactory (alpha = 0,83) and the item-total correlation resulted equal or upper than 0,45. Two factors were identified (52% of variance), one of them formed by 3 out of the 4 memory-related items. The correlation with other measures was weak (rS < 0,35), except for the CISI-PD's item 'cognitive state' (rS = 0,51). SCOPA-Cog scored significantly different for Hoehn and Yahr stages and for patients grouped by age, age at onset of PD, and education. The standard error of measurement was 3,02. A cut-off point 19/20 reached 76% sensitivity and specificity for dementia. Age and age at onset of PD resulted the strongest predictors. CONCLUSION: SCOPA-Cog is a consistent, valid, and precise measure for assessment of the cognitive disorder in PD.