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.

Consistency of clinical diagnosis of dementia in NEDICES: A population-based longitudinal study in Spain.

BACKGROUND: Few longitudinal studies have verified the clinical diagnosis of dementia based on clinical examinations. We evaluated the consistency of the clinical diagnosis of dementia over a period of 3 years of follow-up in a population-based, cohort study of older people in central Spain. METHODS: Individuals (N = 5278) were evaluated at baseline (1994-1995) and at follow-up (1997-1998). The evaluation included a screening questionnaire for dementia and a neurological assessment. RESULTS: Dementia screening consisted of a 37-item version of the Mini-Mental State Examination (MMSE) and the Pfeffer Functional Activities Questionnaire (FAQ). Study neurologists investigated those participants who screened positively (N = 713) as well as 843 who had screened negatively to test the sensitivity of the screening instruments or because they had a positive screening for other chronic neurological diseases. We detected 295 patients among those who screened positive and 13 among those who screened negatively. Three years follow-up evaluation demonstrated 14 diagnostic errors at baseline (4.5%) leading to a final number of 306 patients with dementia. The corrected prevalence of dementia was 5.8% (95% confidence interval [CI] 5.2-6.5). CONCLUSIONS: The diagnosis of dementia was highly accurate in this population-based, Spanish cohort study, and our prevalence figures agree with other European surveys. Given the high cost and difficulties of population rescreening and its relatively low yield, we conclude that a single 2-phase investigation (screening followed by clinical examination) provides accurate information for most population-based prevalence studies of dementia.

[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.

[Psychometric characteristics of the antiretroviral treatment satisfaction scale (ESTAR): ARPAS study (I)]. / Características psicométricas de la escala de satisfacción con el tratamiento antirretroviral (ESTAR): estudio ARPAS (I).

OBJECTIVE: To evaluate the psychometric characteristics, convergent validity and reliability of the antiretroviral treatment satisfaction scale (ESTAR, escala de satisfacción con el tratamiento antirretroviral). METHOD: Patient satisfaction with ART was determined using the ESTAR questionnaire, developed in Spanish based on the English language version of the HIV-Treatment-Satisfaction Questionnaire (HIVTSQ). In order to evaluate this, internal consistency and test-retest reliability were measured. The construct analysis was performed by studying the covariance and correlation of the questions, and the convergent validity was assessed by using the MOS-HIV (Medical Outcomes Study HIV Health Survey) questionnaire as the standard, as was the content validity by the correlation between the ESTAR and the clinical and therapeutic variables. RESULTS: The ESTAR is structured in two dimensions (clinical satisfaction and satisfaction with lifestyle) with slight modifications to the original version; question 4, discarded in the original version, has been reworded in the Spanish version, and question 9 was deleted because of low communality. As regards the test-retest reliability, all the questions show significant intraclass correlation coefficients (p<0.001). The internal consistency shows higher values than the original version in the lifestyle dimension (a=0.81 vs. a=0.74) and in the total score (a=0.84 vs. a=0.82). With regard to convergent validity, the ESTAR presents significant correlations with the MOS-HIV as a whole and with different dimensions of it, especially the association with mental health, health distress and cognitive functioning dimensions. CONCLUSIONS: The ESTAR turns out to be a suitable, reliable instrument for evaluating satisfaction with ART by HIV+ patients.

[Preferences, satisfaction and compliance with antiretroviral treatment: ARPAS study (II)]. / Preferencias, satisfacción y adherencia con el tratamiento antirretroviral: estudio ARPAS (II).

OBJECTIVE: To describe the ARPAS study and analyse the sociodemographic and clinical characteristics and patient preferences with regards the antiretroviral treatment (ART), as well as the relationship between compliance and satisfaction with the ART and quality of life. METHOD: The ARPAS study has looked at adult patients diagnosed with HIV and on ART, using a protocol including sociodemographic, clinical, therapeutic and quality of life variables. Compliance was estimated using the SMAQ questionnaire; satisfaction was measured using the ESTAR questionnaire, as was quality of life with the MOS-HIV Health Survey, and treatment preferences were determined using a questionnaire prepared based on the consensus of an expert team in the field of therapeutic monitoring of these patients. A stratified univariate analysis according to compliance and a logistic regression analysis were carried out to study the association of the independent variables with compliance. RESULTS: A total of 234 patients were evaluated (73.7% male; 43.2+/-7.8 years of age). The average time since diagnosis and from the initiation of ART was 10.1+/-5.7 and 7.4+/-4.4 years respectively. The therapeutic regime of twice-daily doses (bid) was applied to 71% of the patients, and once daily (qd) in 21%. A total of 43% of the patients fulfilled compliance criteria according to the SMAQ. The percentage of the patients with qd complying with the ART was greater than the remaining dosing schedules (55.3 vs. 45.1%), although not significantly (p=0.251). No differences were observed in the sociodemographic and clinical variables in terms of compliance. An elective preference was observed for the simplest of the therapeutic regimes which contrasts with the evaluation of the ART characteristics, where power is given preference over durability, tolerance and lastly, the convenience of taking the ART. The univariate analysis showed the highest score on the satisfaction scales (50.4+/-7.8 vs. 46.5+/-9.7, p=0.001) and quality of life (81.6+/-10.7 vs. 75.7+/-11.8, p<0.001) in compliant patients with respect to non-compliers. The multivariate models confirm the existence of a significant association between compliance and satisfaction, and between compliance and quality of life. CONCLUSIONS: Patients consider treatment with a powerful, long-lasting and well-tolerated ART a priority and among their preferences for different treatment regimes, once-daily dosing regimes are highlighted. The ARPAS study showed a direct relationship between compliance and satisfaction with ART, and between compliance and quality of life, in a manner that the strategies improving compliance must necessarily include aspects that allow them to improve patient satisfaction with treatment and quality of life.

Edema persistente de miembro inferior debido a quistes sinoviales en un paciente con artritis reumatoide / Persistent lower limb edema caused by synovial cysts in a patient with rheumatoid arthritis

Introducción. Las bursitis del iliopsoas son una entidad clínica poco frecuente como causa de compresión de estructuras vasculonerviosas de la región inguinal. Ésta a menudo se encuadra asociada a diversas patologías de la cadera y es raro encontrarla como entidad clínica aislada. Caso clínico. Se presenta el caso de un paciente de 75 años diagnosticado de artritis reumatoide de larga evolución, con edemas persistentes en miembro inferior derecho, así como dolor e incapacidad funcional de la misma cadera debido a una amplia sinovitis. Los estudios de imagen demuestran un quiste sinovial ectópico gigante del iliopsoas con compresión de las estructuras vasculares inguinales. Fue tratado, en principio, con punciones repetidas e infiltraciones de corticoides que no resolvieron el caso, por lo que se decide extirparlo quirúrgicamente, para en un segundo tiempo proceder a la sustitución total de la cadera. Conclusión. Los autores concluyen que la bursitis del iliopsoas debe ser considerada en la evaluación de los pacientes con dolor inespecífico de la ingle o la pelvis. El tratamiento con corticoides se debería intentar como alternativa previa a la cirugía

Introduction. Bursitis of the iliopsoas infrequently causes compression of the vascular and nerve bundle in the inguinal region. Compression of vascular and nerve structures in the inguinal region is more frequently associated with different hip conditions and is rarely found as an isolated clinical entity. Case report. We present the case of a 75 year old patient diagnosed with long term rheumatoid arthritis and persistent edema in his lower right leg. The patient also reported pain and had decreased functionality of his right hip due to a large synovitis. Images showed a giant ectopic synovial cyst on the iliopsoas with compression of inguinal vascular structures. The patient was initially treated with repeated punctures and steroid injections, but did not resolve. Therefore it was decided to excise the cyst surgically and subsequently, in a second operation, perform total hip replacement. Conclusion. The authors conclude that iliopsoas bursitis must be considered when patients with non-specific pain in the groin or pelvis are assessed. Steroid treatment must be used before deciding on a surgical approach

[Approach to epidemiological cohort designs]. / Acercamiento a los diseños epidemiológicos de cohorte.

In neurological cohort studies participants are those who are "at risk" of developing the outcome (i.e., stroke, dementia, parkinsonism) and should be free of such event when their follow-up is begun. They are classified and controlled at the outset by their risk or "exposition" factors. There are several alternatives of selecting the study population, although the most known are those of the large population bases (for example, Framingham Heart Study, the Rochester MN, etc.). There should be standardized procedures of classification and follow-up and the investigator who makes the diagnosis should be blinded to the exposure status, when it is possible. In cohort studies, we will consider several frequency measures, such as incidence and risk, and the most frequent association measures, such as relative risk, risk difference, and rate ratio. The advantages of a cohort study in neurology are: a) the exposure is known to occur prior to the onset of the outcome and is measured prior to the occurrence of the outcome, b) multiple exposures and outcomes (end-points) can be studied simultaneously, and they usually have good control, c) it is good for rare exposures (if there was adequate sampling), and it is good for common outcomes. The disadvantages of a cohort studies are: a) they are expensive and time-consuming; b) possibility of change in investigators for very long studies, or attrition of participants; c) not good for rare outcomes; d) exposures can change, exposures are not independent of other potential causes and prognostic factors, and e) knowledge of exposure may alter surveillance for the disease or alter the likelihood that a particular diagnostic label will be applied. It is useful for the clinical neurologist to know and to understand these terminology and concepts.

Incidence of Parkinson disease and parkinsonism in three elderly populations of central Spain.

BACKGROUND: A two-phase investigation method (screening followed by detailed examination) is the most accurate epidemiologic approach to estimate the epidemiology of Parkinson disease (PD) and secondary parkinsonism. The scarcity of statistics on the incidence of PD and other types of parkinsonism using this methodology led the authors to estimate them in three elderly populations. METHODS: A Spanish elderly parkinsonism-free cohort was followed for an average of 3 years. At the end of the follow-up, the cohort survivors were contacted by way of screening and clinical examination. RESULTS: The cohort consisted of 5,160 subjects (ages 65 to 85 and over): Eight hundred twenty-eight died before the examination, 3,685 completed the screening procedure, and 647 could not be screened because they refused (108) or were unreachable (539). Sixty-eight incident cases of parkinsonism were found: 30 PD (44.1%), 22 drug-induced parkinsonism (32.3%), 8 parkinsonism with associated features (11.7%), and 3 vascular parkinsonism (4.4%). The remaining five cases (7.3%) were classified as unspecified parkinsonism. Average annual incidence rate (per 100,000 person-years) in the population aged 65 to 85 and over years, adjusted to the standard European population, was 409.9 (95% CI 299.0 to 520.8) for parkinsonism and 186.8 (95% CI 110.4 to 263.2) for PD. Incidence rates of parkinsonism increased with advancing age. For PD, incidence rates increased with age in men but decreased beyond the age of 79 in women. Age-adjusted relative risk in men compared with women was 1.56 (95% CI 0.97 to 2.51) for parkinsonism and 2.55 (95% CI 1.21 to 5.37) for PD. Sixteen (53.3%) patients with PD were detected through the screening and had not been diagnosed previously. CONCLUSIONS: Incidence estimates of PD based on two-phase investigation methodology are higher than those based on other approaches. Men had a risk of developing PD that was twice that of women. A large proportion of PD patients may never seek neurologic attention.

[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.

[Validation of the S-IQCODE: the Spanish version of the informant questionnaire on cognitive decline in the elderly]. / Estudio de validación del S-IQCODE: la versión española del informant questionnaire on cognitive decline in the elderly.

Although in the last decade the screening test of dementia have improved, is still being of interest the study of simple methods with a most sensitivity and specificity in the detection of the cognitive decline. Jorm et al have used recently a questionnaire (IQCODE) by which a subject's relative informs of the decline suffered by this in his cognitive capacity. In this work is showed a spanish adaptation of this test, the spanish-IQCODE, analysing it's usefulness for the detection of mild dementia. The S-IQCODE shows a diagnostic validity (sensitivity of 86%, specificity of 92%, positive predictive value of 54% and negative predictive value of 98%) greater than Mini-Mental State Examination (MMSE); it also shows a correlation with the diagnostic of dementia greater (r = 0.70 vs r = 0.37); and, different from MMSE, it doesn't show significative correlations with the age, the schooling and the premorbid intelligence. The results in this study show the S-IQCODE as a good test for the detection of the mild dementia, of greater diagnostic power than the MMSE and less contaminated than this by strange variables to the cognitive decline.