Red de cuidadores informales de los pacientes con demencia en la provincia de Alicante, descripción de sus características / Characteristics of informal caregivers of patients with dementia in Alicante province

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Impaired health-related quality of life predicts progression of disability in multiple sclerosis.

BACKGROUND AND PURPOSE: To determine the value of health-related quality of life (HRQOL) in predicting progression of disability in patients with multiple sclerosis (MS) over a period of 2 years. METHODS: Patients with MS were recruited in 13 outpatient clinics in Madrid, Spain. Baseline HRQOL was quantified using the Functional Assessment of MS (FAMS) and disability with Kurtzke Expanded Disability Status (EDSS). A clinical meaningful deterioration of disability was defined as an increased of ≥1 point in baseline EDSS scores of ≤5.5 and an increase of ≥0.5 point in baseline EDSS scores of ≥6.0. We dichotomized the change in disability according to clinical meaningful deterioration (dependent variable) and performed a logistic regression analysis with the tertiles of the FAMS scores (the upper tertile [high HRQOL] was the reference) as independent variable, adjusting by socio-demographic and clinical variables. RESULTS: Out of 371 enrolled patients, 61 patients with MS dropped out during the 2-year follow-up. Of the remaining 310, 94 (30.3%) had clinical meaningful deterioration of disability. The odds of clinical meaningful deterioration of disability were higher as HRQOL decreased with a significant dose-dependent effect. Adjusted odds ratios were 2.61 [95% confidence interval (CI) 95% = 1.12-6.09], [middle tertile vs. upper tertile (reference)]; and 3.27 (95% CI = 1.31-8.18), (lower tertile vs. upper tertile). CONCLUSIONS: The identification of those patients with MS with poor HRQOL may be important in assessing the risk of future disability progression. Clearly, impaired HRQOL should be one of the primary concerns amongst clinicians who provide treatment to patients affected by MS.

Burden and health-related quality of life of Spanish caregivers of persons with multiple sclerosis.

Little information exists about caregivers of persons with multiple sclerosis (MS). Our aims were to describe the characteristics of a sample of caregivers of persons with MS, assess their perceived burden, health-related quality of life, and investigate factors influencing this burden. We studied 278 caregivers of persons with MS, recruited from a Spanish cross-sectional survey, measuring health-related quality of life by the 36-Item Short-Form Health Survey (SF-36) and burden by the Zarit Caregiver Burden Interview. Of the caregivers, 56.8% were female and their mean age was 50.1 +/- 12.6 years. Their main relationship with the person with MS was spouse/partner (52.9%) and son or daughter (25.9%). Caregiver General Health, Mental Health, Bodily Pain, and Role-emotional Functioning were the most affected dimensions on the SF-36. Multiple regression analysis showed that independent and significant predictors of burden were Role-emotional Functioning and Vitality dimensions SF-36 scores of caregivers, and the Expanded Disability Status Scale scores. The total adjusted variance explained by these variables (adjusted R(2)) was 0.512. Emotional factors and the disability of the person with MS were major predictors of burden. Psychological and social support should be considered to reduce caregiver burden.

Cognitive dysfunction in multiple sclerosis: methods and prevalence from the GEDMA Study.

BACKGROUND/AIMS: Cognitive dysfunction is a major handicap in multiple sclerosis (MS). Its prevalence varies due to disease heterogeneity and methodological issues. A neuropsychological battery of intermediate size was designed for and explored in the screening of cognitive dysfunction in MS patients. METHODS: The battery was administered to a hospital-based sample of 191 MS patients and 50 matched controls. Eleven test scores measuring verbal fluency, verbal learning, attention, calculation and visuoperceptual ability were selected on the basis of sensitivity and lack of redundancy. Two alternative approaches were compared for diagnosis of cognitive dysfunction based, firstly, on the number of failed tasks, and secondly, on a single standardized global score. RESULTS: The approach based on the number of failed tasks discriminated better than did the global approach between patients and controls. Using a cutoff of two altered scores, a cognitive dysfunction prevalence of 34% was obtained. The score yielded after summing errors in all tests was the most frequently altered and proved particularly useful for detecting minimally impaired patients. CONCLUSION: The purpose-designed battery was adequate for the screening of cognitive dysfunction in MS patients. The better accuracy of the single-task approach might reflect MS heterogeneity.

[The social and familial dimension: experiences of caregivers and people with multiple sclerosis. The GEDMA study]. / Dimensión social y familiar: experiencias de cuidadoresy personas con esclerosis múltiple. El estudio GEDMA.

INTRODUCTION: Comparing the perceptions of multiple sclerosis (MS) patients and caregivers with regard to the same social and familial issues, as well as delving deeper into the factors that determine the quality of life of these patients and their relatives by using a qualitative methodology, can help us to complete the information on the same topic that has already been collected using scales and quantitative protocols. AIM: To analyse how a group of people with MS and their caregivers perceive the disease by examining the way they talk about their experience with it. SUBJECTS AND METHODS: A qualitative methodology was used; more particularly, data were obtained by holding six discussion groups made up of patients and caregivers, who were members of MS patient associations. RESULTS: People with MS reported the social stigma attached to suffering from the disease. Many of the caregivers thought that patients with MS did not accept the disease and felt that over-protection was of little help in coming to terms with the disease and should therefore be avoided. Remunerated work was described by caregivers as a factor that, at the same time, generated and protected the burden. CONCLUSIONS: The social stigma, the lack of work and coming to terms with MS were the greatest issues for the patient, while support from the family network, the relationship that should be established with the patient, the impact of MS on children and the role played by remunerated work were the main dimensions of the disease for the caregiver.

Dimensión social y familiar: experiencias de cuidadores y personas con esclerosis múltiple. El estudio GEDMA / The social and familian dimension: Experiences of caregivers and people with multiple sclerosis. The GEDMA study

Introducción. La comparación de la percepción de pacientes con esclerosis múltiple (EM) y cuidadores en torno a las mismas problemáticas sociales y familiares, así como la profundización en factores que determinan la calidad de vida de estos pacientes y familiares, a través de metodología cualitativa, pueden completar información sobre el mismo tema ya conocidapor el uso de escalas y protocolos cuantitativos. Objetivo. Analizar la percepción de un grupo de personas con EM y cuidadores sobre la enfermedad a través de la narración de su experiencia. Sujetos y métodos. Se utilizó metodología cualitativa, concretamente los datos se obtuvieron mediante la realización de seis grupos de discusión, formados por pacientes y cuidadores, miembros de asociaciones de enfermos de EM. Resultados. Las personas con EM describían el estigma social que conllevaba padecer la enfermedad. Una gran parte de los cuidadores pensaba que los enfermos de EM no asumían la enfermedad y percibían que la sobreprotección no ayudaba a esa asunción y, por lo tanto, debía evitarse. El trabajo remunerado sedescribió por los cuidadores como un factor, al mismo tiempo, generador y protector de la carga. Conclusiones. El estigma social, la ausencia de trabajo y la asunción de la EM constituían las grandes problemáticas en el paciente, mientras que el apoyo de la red familiar, la relación que se debe establecer con el paciente, el impacto de la EM en los niños y el papel del trabajo remunerado conformaron las dimensiones principales de la enfermedad en el cuidador

Introduction. Comparing the perceptions of multiple sclerosis (MS) patients and caregivers with regard to the same social and familial issues, as well as delving deeper into the factors that determine the quality of life of these patients and their relatives by using a qualitative methodology, can help us to complete the information on the same topic that has already beencollected using scales and quantitative protocols. Aim. To analyse how a group of people with MS and their caregivers perceive the disease by examining the way they talk about their experience with it. Subjects and methods. A qualitative methodology was used; more particularly, data were obtained by holding six discussion groups made up of patients and caregivers, who were members of MS patient associations. Results. People with MS reported the social stigma attached to suffering from the disease. Many of the caregivers thought that patients with MS did not accept the disease and felt that overprotection was of little help in coming to terms with the disease and should therefore be avoided. Remunerated work was described by caregivers as a factor that, at the same time, generated and protected the burden. Conclusions. The social stigma, the lack of work and coming to terms with MS were the greatest issues for the patient, while support from the family network, therelationship that should be established with the patient, the impact of MS on children and the role played by remunerated work were the main dimensions of the disease for the caregiver

[The NEDICES cohort of the elderly. Methodology and main neurological findings]. / La cohorte de ancianos NEDICES. Metodología y principales hallazgos neurológicos.

AIM: To summarise the methodological aspects and main findings of the NEDICES (Neurological Disorders in Central Spain) cohort study of the elderly population, with over 5000 participants. DEVELOPMENT: The article outlines the findings concerning the following chronic neurological diseases (CND): dementia, Parkinson's disease and Parkinsonisms, stroke and essential, or senile, tremor. The NEDICES study examined the health, mortality and a series of sociological aspects of the cohort that are not discussed here. The paper does describe, however, the objectives, methods, population and development, with the baseline (1994) and incidence (1997) cut-off points, and the main findings regarding the CND under study are discussed. CONCLUSIONS: The prevalence and incidence of the CND are comparable to those of other Spanish and European population-based studies, but with certain peculiarities, such as the fact that incidence of senile tremor is the highest of those reported in the literature and that this CND is associated with dementia. Over half the cases of Parkinson's disease were reported de novo with the study and Alzheimer's disease was associated with vascular risk factors.

La cohorte de ancianos NEDICES. Metodología y principales hallazgos neurológicos / The nedices cohort of the elderly methodology and main neurological findings

Resumir los aspectos metodológicos y principales hallazgos del estudio de cohorte poblacional de ancianosNEDICES (Neurological Disorders in Central Spain) integrada por más de 5.000 participantes. Desarrollo. Se sintetizan los hallazgos en enfermedades neurológicas crónicas (ENC): demencia, enfermedad de Parkinson y parkinsonismos, ictus y temblor senil. El estudio NEDICES investigó la salud, la mortalidad y los diversos aspectos sociológicos de la cohorte, que nose discuten. Sí se describen los objetivos, métodos, población y desarrollo con los cortes, basal (año 1994) y de incidencia (año 1997), y se comentan los principales hallazgos en las ENC investigadas. Conclusión. La prevalencia e incidencia de lasENC son análogas a las de otros estudios poblacionales españoles y europeos, aunque con peculiaridades: la incidencia de temblor senil es la más elevada de la bibliografía y esta ENC se asocia con demencia. Más de la mitad de los casos de enfermedad de Parkinson se describieron de novo con el estudio, y la enfermedad de Alzheimer se asoció con factores de riesgovasculares

To summarise the methodological aspects and main findings of the NEDICES (Neurological Disorders inCentral Spain) cohort study of the elderly population, with over 5000 participants. Development. The article outlines the findings concerning the following chronic neurological diseases (CND): dementia, Parkinson’s disease and Parkinsonisms, stroke and essential, or senile, tremor. The NEDICES study examined the health, mortality and a series of sociological aspectsof the cohort that are not discussed here. The paper does describe, however, the objectives, methods, population and development, with the baseline (1994) and incidence (1997) cut-off points, and the main findings regarding the CND under study are discussed. Conclusions. The prevalence and incidence of the CND are comparable to those of other Spanish andEuropean population-based studies, but with certain peculiarities, such as the fact that incidence of senile tremor is the highest of those reported in the literature and that this CND is associated with dementia. Over half the cases of Parkinson’sdisease were reported de novo with the study and Alzheimer’s disease was associated with vascular risk factors

Repercusiones en la calidad de vida en pacientes con espondilitis anquilosante mediante tratamiento fisioterápico / Repercusions in the quality of life in patients with ankylosing spondilitis by physiotherapy

Fundamentos y objetivo. La Espondilitis Anquilosante (EA) condiciona la calidad de vida (CV) de las personas afectadas por la enfermedad, siendo el tratamiento fisioterápico un instrumento encaminado a la mejora de la misma. En el presente estudio se evalúan los resultados del tratamiento fisioterápico, mediante dos protocolos de cinesiterapia, en la CV en pacientes con EA. Material y métodos. Se estudiaron 29 pacientes con EA, los cuales fueron divididos en 2 grupos: grupo control y experimental. Al grupo control se le aplicó un protocolo clásico de fisioterapia mientras que al experimental se le aplicó un protocolo experimental basado en el método de Reeducación Postural Global. Se empleó el Cuestionario SF-36 para la valoración de la CV. Resultados. Los resultados mostraron una mejora en la CV en todos los pacientes independientemente del protocolo fisioterápico aplicado, especialmente en las dimensiones rol físico, función social y rol emocional. Por otro lado, no existieron diferencias significativas entre las mejoras en ambos grupos. Conclusiones. El tratamiento fisioterápico es una herramienta terapéutica indispensable en el tratamiento de la EA, ya que mejora la CV, además de la condición física, en este tipo de pacientes. Debido a las pocas investigaciones existentes en España sobre la CV en la EA, y menos aún en relación a los tratamientos fisioterápicos aplicadas a la misma, creemos que es necesario la realización de estudios que profundicen en este ámbito, mediante el empleo y la validación de instrumentos de CV específicos para la EA

Fundamentals and purpose. Ankylosing Spondylitis (AS) conditions the quality of life in these patients. Physical therapy treatment is a therapeutically instrument necessary in the management of these patients. In the present study there were evaluated the results from two physical therapy treatments measuring changes in quality of life. Material and methods. 29 patients diagnosed with AS according to the modified criteria of New York were divided into 2 groups: control, and experimental group. Control group was treated with a conventional protocol of physical therapy in AS, whereas experimental group was treated with the protocol suggested by our investigation group based on the Global Postural Reeducation method. The quality of life outcome measure was the SF-36 Spanish version. Results. The results showed a statistically improvement in all patients, independently of the physical therapy treatment. The greater improvement was in physical roll, social function, and emotional roll dimensions. However, there were no statistical differences between the improvement in both groups. Conclusions. Physical therapy treatment is a therapeutically instrument necessary in the management of these patient, because improves the quality of life and physical parameters. Due to the few Spanish researches about the quality of life in AS, and about physical therapy treatment, further trials are necessary. Moreover, the validation of specific quality of life questionnaires in AS is necessary in further studies

Methods and demographic findings of the baseline survey of the NEDICES cohort: a door-to-door survey of neurological disorders in three communities from Central Spain.

OBJECTIVE: To describe the methods and general results of the baseline longitudinal survey in a defined cohort of elderly people from three areas of Central Spain (urban and rural). The survey was designed to study dementia, essential tremor, Parkinson's disease and stroke. STUDY DESIGN: A population-based longitudinal study with door-to-door interviews. METHODS: This study was carried out in two phases: Phase 1 (health status questionnaire and screening performed by lay interviewers) and Phase 2 (diagnosis of neurological illnesses by neurologists). RESULTS: The study flow chart, screening instruments for neurological disorders, main demographic data (age, sex, educational attainment, occupation) and general health status of the 5,278 screened participants (2,238 men and 3,040 women) are given for the two phases. The response rate was 85.3%, and participation was higher in men and in the urban area. CONCLUSIONS: Participation rates were good in both phases of the NEDICES baseline study, and this was influenced by age, sex and setting of the participants. Educational attainment, occupation and health status data are analogous to other Spanish studies performed in the elderly. As the study population was large and good participation rates were achieved, precise analysis of morbidity of the neurological disorders investigated will be possible.

A systematic approach to analyse health-related quality of life in multiple sclerosis: the GEDMA study.

OBJECTIVE: To describe a holistic and comprehensive approach to the assessment of sufferer's perceptions of health-related quality of life (HRQoL) in a cohort of multiple sclerosis (MS) patients. METHODS: The GEDMA (Grupo de Enfermedades Desmielinizantes de Madrid, in Spanish) study is an ongoing longitudinal survey using quantitative and qualitative methodologies. The baseline cohort consisted of a large sample of MS patients recruited from 13 hospitals in Madrid, Spain. Using a standardized protocol we collected data concerning the sociodemographic and health status characteristics of patients, as well as implementing a modified Spanish version of the Functional Assessment of Multiple Sclerosis quality of life instrument Primary caregivers were interviewed using a specific protocol combined with the Zarit Burden Interview. RESULTS: The index cohort comprised 371 MS patients (68.7% female) of mean age 38.9+/-0.9 years. Age, sex and clinical form distribution were similar to other MS population-based surveys. There were 258 (69.5%) relapsing-remitting (RR) MS patients and 113 (30.5%) progressive MS patients. More than one-third of the married patients with progressive MS and almost a quarter of the RRMS patients separated or divorced following a diagnosis of MS; 71.3% of the progressive MS patients as well as 65.8% of the RRMS patients were unemployed as a consequence of the disease. Qualitative analysis showed that friendship and family relationships and occupational status were the most significant dimensions influenced by MS. On the other hand, the speech analysis of primary caregivers showed that emotional burden was related to patients' physical disability. Furthermore, primary caregivers described the influence of MS on their own occupational status, their nonacceptance of the disease, a perception of a lack of support by other members of the family as well as a 'selfish and intransigent' attitude of the patients themselves. CONCLUSIONS: The analysis of the GEDMA cohort provides valuable information that helps clarify the impact of MS on patients' HRQoL.

[Validation of a clinical protocol for the detection of dementia in the population]. / Validacion de un protocolo clinico para la deteccion de demencia en ambito poblacional.

AIMS: To analyse the validity of a set of neuropsychological and functional tests, and to study their value in detecting and diagnosing dementia through a pilot study. PATIENTS AND METHODS: A total of 131 subjects (101 controls and 30 with dementia) were evaluated using a comprehensive neuropsychological and functional battery. Validity analyses were conducted using ROC curves in accordance with the definitions of diagnostic test validation. Finally, a discriminant analysis was performed with the tests that showed greater diagnostic validity in the study of the ROC curves. RESULTS: The case and control groups were not significantly different as regards age, sex and level of schooling. The ROC curves analyses showed the following to be the tests with the highest diagnostic validity: the MMSE, delayed recall of a short story, delayed recall of six pictures, the Spanish version of the S IQCODE (shortened) and Pfeffer s FAQ. The discriminant analysis evidenced the fact that the joint utilisation of all the foregoing tests, except delayed recall of six pictures, classified 96.55% of our sample correctly. CONCLUSIONS: By combining direct cognitive evaluation of the subject and functional performance evaluated by a trustworthy informer, the vast majority of participants in the pilot study were correctly classified into patients with and without dementia. The high diagnostic validity of four relatively short tests lends support to their use in broader clinical or population studies.

Validación de un protocolo clínico para la detección de demencia en ámbito poblacional / Validation of a clinical protocol for the detection of dementia in the population

Objetivo. Analizar la validez de un conjunto de pruebas neuropsicológicas y funcionales y estudiar su utilidad en la detección y diagnóstico de la demencia mediante un estudio piloto. Pacientes y métodos. Se evaluaron 131 sujetos (101 controles y 30 dementes) con una amplia batería neuropsicológica y funcional. Los análisis de validez se llevaron a cabo mediante la utilización de curvas ROC según las definiciones de validación de test diagnósticos. Finalmente, se realizó un análisis discriminante con las pruebas que mostraron mayor validez diagnóstica en el estudio de curvas ROC. Resultados. Los grupos de casos y controles no diferían significativamente en edad, sexo y nivel educativo. Los análisis de curvas ROC determinaron como pruebas con mayor validez diagnóstica las siguientes: MMSE, recuerdo diferido de una historia corta, recuerdo diferido de seis láminas, la versión española del S-IQCODE (reducida) y el FAQ de Pfeffer. El análisis discriminante reflejó que el empleo conjunto de las pruebas anteriores-todas, salvo el recuerdo diferido de seis láminas-, clasificaba al 96,55 por ciento de nuestra muestra correctamente. Conclusiones. La combinación de la evaluación cognitiva directa del sujeto y el rendimiento funcional evaluado por un informador fiable permite la clasificación correcta en dementes y no dementes de la gran mayoría de los participantes en el estudio piloto. La elevada validez diagnóstica de cuatro pruebas relativamente cortas sugiere su empleo en estudios más amplios, clínicos o poblacionales (AU)

El movimiento asociativo en el ámbito de la saludmental. Un estudio cualitativo realizado en Madrid / Consumer movement in mental health area. A qualitative survey carried out in Madrid

Introducción: El peso que está adquiriendo el movimiento asociativo en el ámbito de la salud mental nos ha conducido a poner en marcha una investigación en la cual se analice la situación del asociacionismo en dicha área. Métodos: Se realizó un grupo de discusión y dos entrevistas semi-estructuradas (metodología cualitativa) donde estaban representadas asociaciones paradigmáticas de la Salud Mental en la Comunidad de Madrid. Resultados: Los discursos señalan que las asociaciones relacionadas con la salud mental tienen como objetivo participar directamente en el diseño de políticas sanitarias. Los Grupos de Ayuda Mutua integrados en las asociaciones intentan reducir los anatemas creados en torno a la salud mental a través de sus propios espacios simbólicos. La escasa participación en las asociaciones es atribuida principalmente a la identificación de éstas con entidades que gestionan servicios. Conclusiones: El movimiento asociativo debe incluirse en el Sistema de Salud Mental como un complemento del mismo (AU)

Health-related quality of life and its relationship to cognitive and emotional functioning in multiple sclerosis patients.

The existing knowledge about the health-related quality of life (HRQoL) and its relationship to cognitive and/or emotional functioning in multiple sclerosis (MS) is scarce. We assessed differences between subgroups of MS outpatients (n = 209) on one HRQoL instrument: a version of the Functional Assessment of Multiple Sclerosis quality of life instrument; on two cognitive functioning tests: the Mini-Mental State Examination and the clock drawing test; and on two emotional functioning tests: the Hamilton Rating Scale for Depression and the Hamilton Rating Scale for Anxiety. Three disease-related characteristics were assessed: physical disability, duration of the illness, and clinical course. The results showed that each of these has an effect on at least one dimension of HRQoL and on one mental functioning test. Thus, the more severe, the more progressive, and the longer the illness duration, the lower the HRQoL. Likewise, cognitive mean scores decreased and emotional mean scores increased with greater illness severity and progressive the MS. Furthermore, we also found significant correlations between cognitive and emotional functioning tests and HRQoL dimensions. Thus, the worse cognitive functioning and the higher depressive and anxiety symptoms score the lower the HRQoL.

[Searching for more specific dimensions for the measurement of quality of life in multiple sclerosis]. / Hacia la búsqueda de dimensiones más específicas en la medición de la calidad de vida en la esclerosis múltiple.

INTRODUCTION AND OBJECTIVES: Study of the quality of life in multiple sclerosis (MS) should consider use of an instrument which includes social, psychological, physical and mental aspects. The objective of this study is to show the validated dimensions of the scale of quality of life Functional Assessment of Multiple Sclerosis (FAMS) in the Spanish population, and verify their consistency. PATIENTS AND METHODS: 308 patients with MS (clinically defined or with laboratory support, according to Poser s clinical criteria), referred from 10 Neurology Outpatient Clinics of Hospitals of the Autonomic Community of Madrid. The study was of transversal design, and carried out by direct interview. We used a questionnaire containing the FAMS scale and other variables related to different aspects (clinical, social, employment, psychological and cognitive). RESULTS: The average age was 38.2 +/- 10.5 years with an average score on the Expanded Disability Status Scale (EDSS) of 3.6 +/- 2.3. The average scores of the parameters are lower than those obtained with the original version of FAMS; the internal consistency of these dimensions is slightly higher than those of the original FAMS. The parameters symptoms and general state of mind and also the FAMS in general had their internal consistency increased by the inclusion of eight variables which were originally excluded. CONCLUSION: The FAMS scale is more consistent and reliable for the evaluation of quality of life if we include specific variables of MS which do not form part of the American version of the FAMS.