Validity of the Global Activity Limitation Indicator (GALI) to evaluate severity of disability.

Our aim was to estimate the validity of the Global Activity Limitation Indicator (GALI) when measuring the severity level of disability. Data came from 153 residents of Spain, who requested an evaluation of their degree of disability. We compared disability classifications (severe vs. non-severe) from GALI against those from the 36-item questionnaire WHODAS 2.0, the current gold standard measure of disability. The sensitivity of GALI to detect severe disability was 58.3% [95% confidence interval (CI):43.2-72.4], and the specificity was 84.8% (95% CI: 76.4-91.0). Thus, the validity of GALI to accurately categorize the degree of severity of an individual's disability is not high, this in great part due to its limited sensitivity.

Prevalence of and factors associated with homebound status among adults in urban and rural Spanish populations.

BACKGROUND: There is a marked growth in the number of homebound older adults, due mainly to increased life expectancy. Although this group has special characteristics and needs, it has not been properly studied. This study thus aimed to measure the prevalence of homebound status in a community-dwelling population, and its association with both socio-demographic, medical and functional characteristics and the use of health care and social services. METHODS: We used instruments coming under the WHO International Classification of Functioning (ICF) framework to carry out a cross-sectional study on populations aged 50 years and over in the province of Zaragoza (Spain), covering a total of 1622 participants. Persons who reported severe or extreme difficulty in getting out of the house in the last 30 days were deemed to be homebound. We studied associations between homebound status and several relevant variables in a group of 790 subjects who tested positive to the WHODAS-12 disability screening tool. RESULTS: Prevalence of homebound status was 9.8 % (95 % CI: 8.4 to 11.3 %). Homebound participants tended to be older, female and display a lower educational level, a higher number of diseases, poorer cognition and a higher degree of disability. In fully adjusted models including disability as measured with the ICF-Checklist, the associated variables (odds ratios and [95 % confidence intervals]) were: female gender (3.75 [2.10-6.68]); urban population (2.36 [1.30-4.29]); WHODAS-12 disability (6.27 [2.56-15.40]); depressive symptoms (2.95 [1.86-4.68]); moderate pain (2.37 [1.30-4.31] and severe pain (3.03 [1.31-7.01]), as compared to the group with no/mild pain; hospital admissions in the previous 3 months (2.98 [1.25-7.11]); and diabetes (1.87 [1.03-3.41]). Adjustment for ICF-Checklist disability had a notable impact on most associations. CONCLUSIONS: The study shows that homebound status is a common problem in our setting, and that being disabled is its main determinant. Socio-demographic characteristics, barriers and chronic diseases can also be assumed to be playing a role in the onset of this condition, indicating the need for further research, including longitudinal studies on its incidence and associated factors.

Associations between chronic conditions, body functions, activity limitations and participation restrictions: a cross-sectional approach in Spanish non-clinical populations.

OBJECTIVES: To analyse the relationships between chronic conditions, body functions, activity limitations and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) framework. DESIGN: A cross-sectional study. SETTING: 2 geographical areas in the Autonomous Region of Aragon, Spain, namely, a rural area, Cinco Villas, and an urban area in the city of Zaragoza. PARTICIPANTS: 864 individuals selected by simple random sampling from the register of Social Security card holders, aged 50 years and over, positive to disability screening. MAIN OUTCOME MEASURES: ICF Checklist-body function domains, WHO Disability Assessment Schedule 2.0 (WHODAS 2.0, 36-item (WHODAS-36)) global scores and medical diagnoses (chronic conditions) from primary care records. RESULTS: Mild disability (WHODAS-36 level 5-24%) was present in 51.5% of the sample. In the adjusted ordinal regression model with WHODAS-36 as the dependent variable, disability was substantially associated with moderate-to-complete impairment in the following functions: mental, OR 212.8 (95% CI 72 to 628.9); neuromusculoskeletal, OR 44.8 (24.2 to 82.8); and sensory and pain, OR 6.3 (3.5 to 11.2). In the relationship between health conditions and body function impairments, the strongest links were seen for: dementia with mental functions, OR 50.6 (25.1 to 102.1); cerebrovascular disease with neuromusculoskeletal function, OR 5.8 (3.5 to 9.7); and chronic renal failure with sensory function and pain, OR 3.0 (1.49 to 6.4). Dementia, OR 8.1 (4.4 to 14.7) and cerebrovascular disease, OR 4.1 (2.7 to 6.4) were associated with WHODAS-36 scores. CONCLUSIONS: Body functions are heterogeneously linked to limitations in activities and restrictions on participation, with the highest impact being due to mental and musculoskeletal functions. This may be relevant for disability assessment and intervention design, particularly if defined on a body function basis. Control of specific health conditions, such as dementia and cerebrovascular disease, appears to be paramount in reducing disability among persons aged 50 years and over.

Parkinson Symptoms and Health Related Quality of Life as Predictors of Costs: A Longitudinal Observational Study with Linear Mixed Model Analysis.

OBJECTIVE: To estimate the magnitude in which Parkinson's disease (PD) symptoms and health- related quality of life (HRQoL) determined PD costs over a 4-year period. MATERIALS AND METHODS: Data collected during 3-month, each year, for 4 years, from the ELEP study, included sociodemographic, clinical and use of resources information. Costs were calculated yearly, as mean 3-month costs/patient and updated to Spanish €, 2012. Mixed linear models were performed to analyze total, direct and indirect costs based on symptoms and HRQoL. RESULTS: One-hundred and seventy four patients were included. Mean (SD) age: 63 (11) years, mean (SD) disease duration: 8 (6) years. Ninety-three percent were HY I, II or III (mild or moderate disease). Forty-nine percent remained in the same stage during the study period. Clinical evaluation and HRQoL scales showed relatively slight changes over time, demonstrating a stable group overall. Mean (SD) PD total costs augmented 92.5%, from € 2,082.17 (€ 2,889.86) in year 1 to € 4,008.6 (€ 7,757.35) in year 4. Total, direct and indirect cost incremented 45.96%, 35.63%, and 69.69% for mild disease, respectively, whereas increased 166.52% for total, 55.68% for direct and 347.85% for indirect cost in patients with moderate PD. For severe patients, cost remained almost the same throughout the study. For each additional point in the SCOPA-Motor scale total costs increased € 75.72 (p = 0.0174); for each additional point on SCOPA-Motor and the SCOPA-COG, direct costs incremented € 49.21 (p = 0.0094) and € 44.81 (p = 0.0404), respectively; and for each extra point on the pain scale, indirect costs increased € 16.31 (p = 0.0228). CONCLUSIONS: PD is an expensive disease in Spain. Disease progression and severity as well as motor and cognitive dysfunctions are major drivers of costs increments. Therapeutic measures aimed at controlling progression and symptoms could help contain disease expenses.

Discordance between physician-rated health and an objective health measure among institutionalized older people.

BACKGROUND: Although physician-rated health is emerging as a potentially useful variable in research, with implications in practice, it has not been analyzed. Moreover, one of its most important aspects, namely, concordance with patients' objective health state, has not been investigated. This study sought to measure concordance between physician-rated health and an objective health measure, and assess both measures' validity in predicting death. METHODS: The data for the study were drawn from a 1998-1999 survey and subsequent mortality follow-up of residential and nursing homes in Madrid (Spain). Study subjects were 630 residents aged ≥65 years, and their respective facility physicians. Measures included agreement between physicians' rating of residents' overall health (good, intermediate or poor) and an objective measure of residents' health (good, intermediate or poor), based on functional capacity, cognitive status, and number of chronic conditions. Overrating was defined as any case where health, rated as good by a physician, was objectively rated as poor. RESULTS: Whereas 45% of physicians and 55% of residents rated their health as good, only 4% of such residents had good objective health. Of those who received a physician rating of good/very good health, 39.0% had poor objective health. There was evidence of clear overrating in 18% of the population, and clear to moderate overrating in 73% of the population. In terms of power to predict mortality, the pattern of behavior shown by the objective health measure was good, graded and congruent, and better than that shown by physician-rated health. CONCLUSION: Physician overrating of the overall health of older persons in residential and nursing homes, would appear to be very high. Although some degree of contextualization by physicians in this setting might be considered reasonable, the degree of overrating in our population seems nevertheless excessive.

Incidence of multiple sclerosis among European Economic Area populations, 1985-2009: the framework for monitoring.

BACKGROUND: A debate surrounding multiple sclerosis epidemiology has centred on time-related incidence increases and the need of monitoring. The purpose of this study is to reassess multiple sclerosis incidence in the European Economic Area. METHODS: We conducted a systematic review of literature from 1965 onwards and integrated elements of original research, including requested or completed data by surveys authors and specific analyses. RESULTS: The review of 5323 documents yielded ten studies for age- and sex-specific analyses, and 21 studies for time-trend analysis of single data sets. After 1985, the incidence of multiple sclerosis ranged from 1.12 to 6.96 per 100,000 population, was higher in females, tripled with latitude, and doubled with study midpoint year. The north registered increasing trends from the 1960s and 1970s, with a historic drop in the Faroe Islands, and fairly stable data in the period 1980-2000; incidence rose in Italian and French populations in the period 1970-2000, in Evros (Greece) in the 1980s, and in the French West Indies in around 2000. CONCLUSIONS: We conclude that the increase in multiple sclerosis incidence is only apparent, and that it is not specific to women. Monitoring of multiple sclerosis incidence might be appropriate for the European Economic Area.

Medical, environmental and personal factors of disability in the elderly in Spain: a screening survey based on the International Classification of Functioning.

OBJECTIVES: The International Classification of Functioning, Disability and Health (ICF) advocates a multifactorial and multifaceted conceptualization of disability. The objective of this study was to ascertain major medical, environmental and personal determinants of severe/extreme disability among the elderly population in Spain. The assessment scheme was consistent with the ICF model of disability. METHODS: Nine populations contributed probabilistic or geographically-defined samples following a two-phase screening design. The Mini-Mental State Examination and the 12-item version of the World Health Organization-Disability Assessment Schedule, 2(nd) ed. (WHO-DAS II), were used as cognitive and disability screening tools, respectively. Positively screened individuals underwent clinical work-up for dementia and were administered the 36-item version of the WHO-DAS II to estimate ICF disability levels. We used logistic regression for the purposes of data combination, adjusted for age and sex in all analyses. RESULTS: The sample was composed of 503 participants aged ≥ 75 years. Alzheimers disease and depression were highly predictive of severe/extreme disability (OR: 17.40, 3.71). Good access to social services was strongly associated with a low level or absence of disability (OR: 0.05 to 0.18). Very difficult access to services and having dementia or another psychiatric disorder were associated with an increase in disability (OR: 66.06). There was also a significant interaction effect between access to services and neurological disorders (OR: 12.74). CONCLUSIONS: Disability is highly prevalent among the Spanish elderly and is influenced by medical, social and personal factors. Disability could potentially be reduced by ensuring access to social services, preventing dementia and stroke, and treating depression.

Nosocomial transmission of sporadic Creutzfeldt-Jakob disease: results from a risk-based assessment of surgical interventions.

OBJECTIVES: Evidence of surgical transmission of sporadic Creutzfeldt-Jakob disease (sCJD) remains debatable in part due to misclassification of exposure levels. In a registry-based case-control study, the authors applied a risk-based classification of surgical interventions to determine the association between a history of surgery and sCJD. DESIGN: Case-control study, allowing for detailed analysis according to time since exposure. SETTING: National populations of Denmark and Sweden. PARTICIPANTS: From national registries of Denmark and Sweden, the authors included 167 definite and probable sCJD cases with onset during the period 1987-2003, 835 age-, sex- and residence-matched controls and 2224 unmatched. Surgical procedures were categorised by anatomical structure and presumed risk of transmission level. The authors used logistic regression to determine the odds ratio (OR) for sCJD by surgical interventions in specified time-windows before disease-onset. RESULTS: From comparisons with matched controls, procedures involving retina and optic nerve were associated with an increased risk at a latency of ≥1 year OR (95% CI) 5.53 (1.08 to 28.0). At latencies of 10 to 19 years, interventions on peripheral nerves 4.41 (1.17 to 16.6) and skeletal muscle 1.58 (1.01 to 2.48) were directly associated. Interventions on blood vessels 4.54 (1.01 to 20.0), peritoneum 2.38 (1.14 to 4.96) and skeletal muscle 2.04 (1.06 to 3.92), interventions conducted by vaginal approach 2.26 (1.14 to 4.47) and a pooled category of lower-risk procedures 2.81 (1.62 to 4.88) had an increased risk after ≥20 years. Similar results were found when comparing with unmatched controls. INTERPRETATION: This observation is in concordance with animal models of prion neuroinvasion and is likely to represent a causal relation of surgery with a non-negligible proportion of sCJD cases.

ICF-based disability survey in a rural population of adults and older adults living in Cinco Villas, Northeastern Spain: design, methods and population characteristics.

BACKGROUND: This article describes the methods of a door-to-door screening survey exploring the distribution of disability and its major determinants in northeastern Spain. This study will set the basis for the development of disability-related services for the rural elderly in northeastern Spain. METHODS: The probabilistic sample was composed of 1,354 de facto residents from a population of 12,784 Social Security card holders (age: > or = 50 years). Cognitive and disability screenings were conducted (period: June 2008-June 2009). Screening instruments were the MMSE and the World Health Organization Disability Assessment Schedule. Participants screened positive for disability underwent an assessment protocol focusing on primary care diagnoses, disability, lifestyle, and social and health service usage. Participants screened positive for cognitive functioning went through in-depth neurological evaluation. RESULTS: The study sample is described. Usable data were available for 1,216 participants. A total of 625 individuals (51.4%) scored within the positive range in the disability screening, while 135 (11.1%) scored within the positive range of the cognitive screening. The proportion of positively screened individuals was higher for women and increased with age. CONCLUSIONS: Screening surveys represent a feasible design for examining the distribution of disability and its determinants among the elderly. Data quality may benefit from methodological developments tailored to rural populations with a low education level.

Burden, perceived health status, and mood among caregivers of Parkinson's disease patients.

The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross-sectional study that included 289 patient-caregiver pairs was conducted. Caregiver self-assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 +/- 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health-related quality of life (HRQol; EQ-Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (r(S) = 0.01-0.28) with patient-related variables (disease duration, HY, SCOPA-Motor, SCOPA-AUT, HADS, PPRS, and CISI-PD) whereas the ZCBI correlated moderately (r(S) = 0.27-0.47). Among caregivers, the EQ-Tariff was significantly lower and the HADS-Anxiety scores significantly higher for women. ZCBI and HADS-depression, though not EuroQol and HADS-anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient-related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL.

Use of healthcare, patient satisfaction and burden of care in Guillain-Barre syndrome.

OBJECTIVE: The aim of this study was to investigate, in an unselected sample of patients with Guillain-Barré syndrome in Sweden, the utilization of healthcare resources, satisfaction with these resources, informal help and the burden of care on family caregivers during the first 2 years after onset. SUBJECTS: Forty-four patients were enrolled from 8 hospitals, and 42 of them were followed for 2 years. METHODS: Data on the utilization of hospital inpatient and outpatient care, primary care and community-based services were collected via computerized registry information, medical records and a specific protocol. Patient satisfaction and the burden on family caregivers were studied using questionnaires. RESULTS: Forty-one patients required inpatient hospitalization for a mean of 82 days. Patients with persistent dependency during activities of daily living had significantly longer hospital stays and more days of outpatient rehabilitation. The majority of patients were satisfied with their care, but dissatisfaction was found regarding information and finances. At 2 years after onset, 26% of patients still depended on informal help. The spouses expressed increased concern and responsibility for household and family. CONCLUSION: Patients with persistent disability due to Guillain-Barré syndrome were found to have long-term need for services from the healthcare system and informal help.

Burden of disease related to Parkinson's disease in Spain in the year 2000.

We measured the burden caused by Parkinson's disease (PD) in Spain during the year 2000 and compared it against PD burden worldwide and in the European A subregion. Burden of disease (BoD) is an important factor in health policy. Disability-adjusted life years (DALY) as a measure of BoD is the result of adding years of life lost (YLL) and years lived with disability (YLD). The burden of PD (BPD) has not been studied in Spain. YLL were obtained from the Spanish death certificates and YLD from the estimated number of incident PD cases and the average PD duration. PD disability was calculated, using the Disability Weights for Diseases in the Netherlands. Prior PD DALY data for Europe and the world were obtained from the 2001 World Health Organization World Health Report. A discount rate of 3% and age-weighting modulation factor with K = 1 were used. In Spain, PD generated 67,582 DALY, comprising 6,351 (9.4%) YLL and 61,231 (90.6%) YLD. Most PD DALY (57.5%) occurred in the population 60 to 74 years of age. When PD DALY estimates were adjusted using the world population in 2000, Spain registered a PD DALY rate of 84 per 100,000 population, higher than both the world and European A subregion rates (24 and 35 per 100,000 population, respectively). PD burden in Spain in 2000 was high, with disability being the major contributing factor. Although BPD in Spain was greater than both world and European A subregion BPD, these differences should nevertheless be interpreted with caution.

Tissue classification for the epidemiological assessment of surgical transmission of sporadic Creutzfeldt-Jakob disease. A proposal on hypothetical risk levels.

BACKGROUND: Epidemiological studies on the potential role of surgery in Creutzfeldt-Jakob Disease transmission have disclosed associations with history of specific surgical interventions or reported negative results. METHODS: Within the context of a case-control study designed to address surgical risk of sporadic Creutzfeldt-Jakob Disease in Nordic European countries (EUROSURGYCJD Project), a strategy was adopted to categorise reported surgical procedures in terms of potential risk of Creutzfeldt-Jakob Disease acquisition. We took into account elements of biological plausibility, either clinically or experimentally demonstrated, such as tissue infectivity, PrP expression content or successful route of infection. RESULTS: We propose a classification of exposed tissues and anatomic structures, drawn up on the basis of their specific putative role as entry site for prion transmission through contact with surgical instruments that are not fully decontaminated. CONCLUSIONS: This classification can serve as a reference, both in our study and in further epidemiological research, for categorisation of surgical procedures in terms of risk level of Creutzfeldt-Jakob Disease acquisition.