Residential Environment Assessment by Older Adults in Nursing Homes during COVID-19 Outbreak.

The most vulnerable residential settings during the COVID-19 pandemic were older adult's nursing homes, which experienced high rates of incidence and death from this cause. This paper aims to ascertain how institutionalized older people assessed their residential environment during the pandemic and to examine the differences according to personal and contextual characteristics. The COVID-19 Nursing Homes Survey (Madrid region, Spain) was used. The residential environment assessment scale (EVAER) and personal and contextual characteristics were selected. Descriptive and multivariate statistical analysis were applied. The sample consisted of 447 people (mean age = 83.8, 63.1% = women, 50.8% = widowed, 40% = less than primary studies). Four residential assessment subscales (relationships, mobility, residential aspects, privacy space) and three clusters according to residential rating (medium-high with everything = 71.5% of cases, low with mobility = 15.4%, low with everything = 13.1%) were obtained. The logistic regression models for each cluster category showed to be statistically significant. Showing a positive affect (OR = 1.08), fear of COVID-19 (OR = 1.06), high quality of life (OR = 1.05), not having suspicion of depression (OR = 0.75) and performing volunteer activities (OR = 3.67) were associated with the largest cluster. It is concluded that a better residential evaluation was related to more favourable personal and contextual conditions. These results can help in the design of nursing homes for older adults in need of accommodation and care to facilitate an age-friendly environment.

Physical and social environmental factors related to co-occurrence of unhealthy lifestyle behaviors.

Previous work identifying determinants of co-occurrence of behavioral risk factors have focused on their association with individuals' characteristics with scant attention paid to their relationship to contextual factors. Data came from 21,007 individuals ≥15 years of age who participated in the cross-sectional 2011-2012 Spanish National Health Survey. Two indicators were defined by tobacco consumption, alcohol intake, diet, physical activity, and body mass index. The first indicator, based on dichotomized measures, ranges from 0 to 5. The second one (unhealthy lifestyle index), ranges from 0 to 15, with 0 denoting the healthiest score. Among the determinants, we examined social support, five perceived characteristics of the neighborhood, and the socioeconomic deprivation index of the census tract of residence. Data were analyzed using multilevel linear and logistic regression models adjusted for the main sociodemographic characteristics. Using the dichotomized indicator, the probability of having 3-5 risk factors versus <3 factors was associated with low social support (Odds Ratio [OR] 1.50; 95% Confidence Interval [CI]: 1.25-1.80). Issues surrounding neighborhood cleanliness (OR = 1.18; 95%CI: 1.04-1.33), air pollution (OR = 1.38; 95%CI: 1.16-1.64), and street crime (OR = 1.21; 95%CI: 1.03-1.42) were associated with determinants of co-occurrence. Risk factors co-occurrence increased as deprivation level increased: the OR for the highest deprivation quintile versus the lowest was 1.30 (95%CI: 1.14-1.48). Similar results were observed when using the unhealthy lifestyle index. Poorer physical and social environments are related to greater co-occurrence of risk factors for chronic diseases. Health promotion interventions targeting the prevention of risk factors should consider the contextual characteristics of the neighborhood environment.

Small area influences on the individual unhealthy lifestyle behaviors: A multilevel analysis of discriminatory accuracy.

We estimated the discriminatory power of area of residence (census tract) on the prevalence of main risk factors for chronic diseases. Results, based on a sample of 21,007 participants from the 2011-2012 National Health Survey of Spain, show a differential influence of the geosocial environment on the four health risk factors. Accounting for census tracts substantially increases the discriminatory power regarding at-risk alcohol consumption, unbalanced diet, and leisure-time sedentarism but not tobacco consumption. However, the socioeconomic characteristics of the tracts played a minor role. Further research on the specific geosocial contextual variables explaining variability in these risk factors is necessary.

Cost-Effectiveness of Device-Aided Therapies in Parkinson's Disease: A Structured Review.

BACKGROUND: Despite optimal dopaminergic treatment most patients in moderate to advanced stages of Parkinson's disease (PD) experience progressively increasing disabilities, necessitating a shift from oral medication to device-aided therapies, including deep brain stimulation (DBS), intrajejunal levodopa-carbidopa infusion (IJLI), and continuous subcutaneous apomorphine infusion (CSAI). However, these therapies are costly, limiting their implementation. OBJECTIVES: To perform a systematic review on cost-effectiveness analyses for device-aided therapies in PD. METHODS: References were identified by performing a systematic search in the PubMed and Web of Science databases in accordance with the PRISMA statement. In the absence of universal cost-effectiveness definitions, the gross domestic product per capita (GDP) in the country where a study was performed was used as a cut-off for cost-effectiveness based on cost per quality adjusted life year (QALY) gained. RESULTS: In total 30 studies were retrieved. All device-aided therapies improved quality of life compared to best medical treatment, with improvements in QALYs between 0.88 and 1.26 in the studies with long temporal horizons. For DBS, nearly all studies showed that cost per QALY was below the GDP threshold. For infusion therapies only three studies showed a cost per QALY below this threshold, with several studies with long temporal horizons showing costs below or near the GDP threshold. CONCLUSION: Of the device-aided therapies, DBS can be considered cost-effective, but the majority of infusion therapy studies showed that these were less cost-effective. However, long-term use of the infusion therapies appears to improve their cost-effectiveness and in addition, several strategies are underway to reduce these high costs.

Assessment of Ataxia Rating Scales and Cerebellar Functional Tests: Critique and Recommendations.

BACKGROUND: We assessed the clinimetric properties of ataxia rating scales and functional tests, and made recommendations regarding their use. METHODS: A systematic literature search was conducted to identify the instruments used to rate ataxia symptoms. The identified rating scales and functional ability tests were reviewed and ranked by the panel as "recommended," "suggested," or "listed" for the assessment of patients with discrete cerebellar disorders, using previously established criteria. RESULTS: We reviewed 14 instruments (9 rating scales and 5 functional tests). "Recommended" rating scales for the assessment of symptoms severity were: for Friedreich's ataxia, the Friedreich's Ataxia Rating Scale, the International Cooperative Ataxia Rating Scale (ICARS), and the Scale for the Assessment and Rating of Ataxia (SARA); for spinocerebellar ataxias, ICARS and SARA; for ataxia telangiectasia: ICARS and SARA; for brain tumors, SARA; for congenital disorder of glycosylation-phosphomannomutase-2 deficiency, ICARS; for cerebellar symptoms in multiple sclerosis, ICARS; for cerebellar symptoms in multiple system atrophy: Unified Multiple System Atrophy Rating Scale and ICARS; and for fragile X-associated tremor ataxia syndrome, ICARS. "Recommended" functional tests were: for Friedreich's ataxia, Ataxia Functional Composite Score and Composite Cerebellar Functional Severity Score; and for spinocerebellar ataxias, Ataxia Functional Composite Score, Composite Cerebellar Functional Severity Score, and SCA Functional Index. CONCLUSIONS: We identified some "recommended" scales and functional tests for the assessment of patients with major hereditary ataxias and other cerebellar disorders. The main limitations of these instruments include the limited assessment of patients in the more severe end of the spectrum and children. Further research in these populations is warranted. © 2020 International Parkinson and Movement Disorder Society.

Embarrassment and Shame in People With Parkinson's Disease: A New Tool for Self-Assessment.

Shame and embarrassment related to Parkinson's disease (PD) are rarely addressed in clinical practice nor studied in neuroscience research, partly because no specific tool exists to detect them in PD. Objective: To develop a self-applied assessment tool of shame and embarrassment specifically related to PD or its treatment, to promptly identify the presence and severity of these two emotions in PD. Methods: Identification and selection of relevant items were obtained from the collection of PD patients' opinions during support groups and interviews. Several further items were added following a literature review. Subsequently, a two-phase pilot study was performed for identification of ambiguous items and omissions, and to obtain preliminary data on acceptability, reliability, validity and relevance of the new scale (SPARK). Results: A total of 105 PD patients were enrolled in the study. Embarrassment was reported in 85% of patients, while shame was present in 26%. Fifteen percent of patients did not describe any shame or embarrassment. On average, the intensity of these two emotions was low with a marked floor effect in SPARK items and subscales. However, SPARK total score inter-individual variability was important (range 1-84 out of 99). Acceptability and quality of data were satisfactory with no floor or ceiling effects (2.9% each) or missing data. Internal consistency (Cronbach's alpha) was 0.94 for total score and 0.73-0.87 for subscales. The scale correlated ≥0.60 with instruments measuring related constructs. Content validity was satisfactory. SPARK total score strongly correlated with impaired health-related quality of life (rS = 0.81), the propensity to feel embarrassed or ashamed (rS = 0.68 and 0.66, respectively), and anxiety (rS = 0.72) and depression (rS = 0.63) levels. Moderate to high correlations were observed between SPARK total score and apathy (rS = 0.46) and a more pronounced personality trait directed toward harm avoidance (rS = 0.46). No significant differences in SPARK scores were found by sex, education level, PD duration, Hoehn and Yahr stages or PD phenotype. Conclusion: Preliminary analysis of psychometric properties suggests that SPARK could be an acceptable and reliable instrument for assessing shame and embarrassment in PD. SPARK could help healthcare professionals to identify and characterize PD-induced shame and embarrassment.

The Disease Burden Morbidity Assessment in older adults and its association with mortality and other health outcomes.

The objective of this study was to assess how disease burden caused by chronic conditions is related to mortality (predictive validity) and other health outcomes (convergent validity). This was studied in 625 community-dwelling adults living in Spain aged 65 years and older. Disease burden was measured with the Disease Burden Morbidity Assessment (DBMA). The association with 5-year mortality was assessed using a Cox model and Kaplan-Meier curves. For convergent validity, mean age, sex ratio, patient-centered outcomes and healthcare utilization were compared for high and low DBMA scores (< 10 vs. ≥ 10). Also, a multivariable linear regression model was used to evaluate the DBMA as a function of these variables. Mean DBMA score in our sample was 7.5. After 5 years, 35 participants had died (5.5%). The Cox model displayed a hazard ratio of 1.07, and the Kaplan-Meier curves showed lower survival for high DBMA scores. Among participants with high DBMA scores, low self-perceived health, disability and female sex were more frequent, and this group showed lower mean scores for quality of life (Personal Wellbeing Index), affect balance (Scale of Positive and Negative Experience) and physical activity (Yale Physical Activity Survey), higher mean age and higher healthcare utilization than persons with low DBMA scores. In the multivariable regression, all variables but age were significantly associated with the DBMA. In conclusion, the DBMA showed satisfactory predictive and convergent validity. In our aging society, it can be applied to better understand and improve care for older persons with multiple chronic conditions.

Rasch Analysis and Construct Validity of the Disease Burden Morbidity Assessment in Older Adults.

Purpose of the Study: The Disease Burden Morbidity Assessment (DBMA) is a self-report questionnaire in which participants rate the disease burden caused by a number of medical conditions. This paper studies the measurement properties of the DBMA, using Rasch analysis. Design and Methods: We used data of 1,400 community-dwelling adults aged 50 years and older participating in the Ageing in Spain Longitudinal Study, Pilot Survey (ELES-PS). Test of fit to the Rasch model, reliability, unidimensionality, response dependency, category structure, scale targeting, and differential item functioning (DIF) were studied in an iterative way. Construct validity of the linear measure provided by the Rasch analysis was subsequently assessed. Results: To achieve an adequate fit to the Rasch model, all items were rescored by collapsing response categories. Reliability (Person Separation Index) was low. The scale was unidimensional and neither response dependency nor relevant DIF were found. The linear measure had a correlation of -0.48 with physical functioning, -0.47 with perceived health, 0.32 with depression, and -0.24 with quality of life (QoL) and displayed satisfactory known-groups validity by sex and age groups. Relative precision analysis showed that the linear measure discriminated better between age groups than the original raw score, but for sex no difference was found. Implications: Despite some limitations, support was found for the validity of the DBMA in older adults. Its linear scores may be useful to assess strategies aimed at improving the QoL of patients with multimorbidity. More research is needed in a hospital-based sample.

Self-Assessment of Disability in Parkinson's Disease: The MDS-UPDRS Part II Versus Clinician-Based Ratings.

BACKGROUND: Parkinson's disease (PD) is characterized by motor and nonmotor symptoms that progress with time, causing disability. The performance of a disease-specific, self-applied tool for assessing disability, the MDS-UPDRS Part II, is tested against generic and rater-based rating scales. METHODS: An international, cross-sectional, observational study was performed. Patients were assessed with the Hoehn and Yahr (HY) and five disability measures: MDS-UPDRS Part II, Schwab and England Scale (S&E), Clinical Impression of Severity Index-PD (CISI-PD) Disability item, Barthel Index (BI), and Rapid Assessment of Disability Scale (RADS). Data analysis included correlation coefficients, Mann-Whitney and Kruskal-Wallis tests, and intraclass-correlation coefficient for concordance. RESULTS: The sample was composed of 451 patients, 55.2% men, with a mean age of 65.06 years (SD = 10.71). Disability rating scales correlated from |0.75| (CISI-PD Disability with BI) to 0.87 (MDS-UPDRS Part II with RADS). In general, MDS-UPDRS Part II showed high correlation coefficients with clinical variables and satisfactory concordance with the rest of disability measures, with ICC ranging from 0.83 (with BI) to 0.93 (with RADS). All disability rating scales showed statistical significant differences in the sample grouped by sex, age, disease duration, and severity level. CONCLUSIONS: The MDS-UPDRS Part II showed an appropriate performance to assess disability in PD, even better than some rater-based, generic or specific, scales applied in this study.

Disease burden morbidity assessment by self-report: Psychometric properties in older adults in Spain.

AIM: To carry out an analysis of the psychometric properties of the Disease Burden Morbidity Assessment (DBMA) according to the assumptions of the Classical Test Theory. METHODS: A sample of 707 community-dwelling adults aged 65 years and older, living in Spain, completed the DBMA. Psychometric properties of the scale (feasibility, acceptability, scaling assumptions, reliability and construct validity) were analyzed. RESULTS: The mean DBMA score was 6.8. Feasibility and acceptability were satisfactory, except for large floor effects (>50%), as well as a skewed distribution (1.8). Item-total corrected correlation ranged 0.10-0.49, item homogeneity index was 0.09 and Cronbach's alpha was 0.72. Disease burden correlated strongly with physical functioning (r = -0.56) and perceived health (r = -0.56), and moderately with depression (r = 0.41) and the Personal Wellbeing Index (r = -0.41). Exploratory factor analysis extracted five factors, explaining 44% of the variance. CONCLUSIONS: The DBMA is an acceptable and valid instrument for measuring disease burden in older adults. Future studies should include Rasch analysis to further assess dimensionality and explore other measurement properties. Geriatr Gerontol 2017; 17: 1102-1108.

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.

Effectiveness of comprehensive care programs for patients with multiple chronic conditions or frailty: A systematic literature review.

OBJECTIVE: To describe comprehensive care programs targeting multimorbid and/or frail patients and to estimate their effectiveness regarding improvement of patient and caregiver related outcomes, healthcare utilization and costs. METHODS: Systematic search in six electronic databases for scientific papers published between January 2011 and March 2014, supplemented by reference tracking. Wagner's Chronic Care Model (CCM) was used to operationalize comprehensive care. The quality of the included studies was assessed, and a best-evidence synthesis was applied. RESULTS: Nineteen publications were included describing effects of eighteen comprehensive care programs for multimorbid or frail patients, of which only one was implemented in a European country. Programs varied in target groups, settings, interventions and number of CCM components addressed. Providing comprehensive care might result in more patient satisfaction, less depressive symptoms, a better health-related quality of life or functioning of multimorbid or frail patients, but the evidence is insufficient. There is no evidence that comprehensive care reduces the number of primary care or GP visits or healthcare costs. Regarding the use of inpatient care, the evidence was insufficient. No evidence was found for a beneficial effect of comprehensive care on caregiver-related outcomes. CONCLUSION: Despite the fact that over the years several (good-quality) studies have been performed to estimate the value of comprehensive care for multimorbid and/or frail patients, evidence for their effectiveness remains insufficient. More good-quality studies and/or studies allowing meta-analysis are needed to determine which specific target groups at what moment will benefit from comprehensive care. Moreover, evaluation studies could improve by using more appropriate outcome measures, e.g. measures that relate to patient-defined (personal) goals of care.

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.

Estimating the direct and indirect costs associated with Parkinson's disease.

Parkinson's disease (PD) is a progressive, neurodegenerative disorder whose symptoms and manifestations greatly deteriorate the health, functional status and quality of life of patients, has severe consequences on their families and caregivers and supposes a challenge for the healthcare system and society. The aim of this paper is to comprehensively and descriptively review studies on the economic impact of the disease and interventions, analyzing major contributing factors to direct and indirect costs in PD. Cost-of-illness studies have shown that costs of PD are high, mainly due to drug, hospitalization and productivity loss, and tend to increase as the disease progresses. Studies on PD treatment have suggested that therapies for advanced PD (levodopa/carbidopa intestinal gel and apomorphine) and surgical procedures are cost-effective and cost saving, despite their high expenditures; however, further research such as on the economic impact of non-motor manifestations or on the cost-effectiveness of non-medical interventions is still needed.

Neuropsychiatric symptoms and caregiver's burden in Parkinson's disease.

INTRODUCTION: In Parkinson's disease (PD), neuropsychiatric symptoms (NPS) can be particularly burdensome for caregivers. The main goal of this study was to assess the impact of NPS, assessed by means of a new specific scale, on caregiver burden. METHODS: A sample of 584 pairs of PD patients and their primary caregivers was studied. Patients' NPS were measured with the Scale for Evaluation of Neuropsychiatric Disorders in PD (SEND-PD), and the Zarit Caregiver Burden Inventory was used to quantify caregiver burden. Three linear regression models were built to check factors associated with caregiver burden, one for the total sample and two for subgroups stratified by the presence of dementia. RESULTS: The most frequent NPS were depression (in 66% of the sample), anxiety (65%) and mental fatigue (57%). Patients with dementia (n = 94; 16% of sample) consistently presented more NPS than patients without dementia (p < 0.001). On linear regression models, the main determinants of caregiver burden (for the total sample and the sample of patients without dementia) were SEND-PD dimensions mood/apathy and psychosis, PD-related disability and disease duration. For patients with dementia, the only significant caregiver burden determinants were SEND-PD psychosis and mood/apathy subscale scores. CONCLUSIONS: NPS in PD are highly associated with and are determinants of caregiver burden, and are more prevalent and burdensome in patients with dementia. Detailed assessment and specific interventions aimed at NPS could alleviate caregiver burden.

Validation of the multimodal assessment of capacities in severe dementia: a novel cognitive and functional scale for use in severe dementia.

The multimodal assessment of capacities in severe dementia (MAC-SD), a novel cognitive and functional assessment, was developed for use with patients with severe dementia. Its psychometric attributes were examined in a unicenter, open, observational study. The MAC-SD along with the Spanish language Severe Mini Mental Exam were administered to 103 patients with a diagnosis of severe dementia. Psychometric analyses were performed to determine acceptability, reliability, validity, and responsiveness. As a whole, the MAC-SD sections showed no floor effects, satisfactory internal consistency, reproducibility, construct validity, precision, and sensitivity to change. The MAC-SD performed as a useful, valid, and potentially responsive tool to measure cognition and functioning in the most advanced stages of dementia.

The MDS-UPDRS Part II (motor experiences of daily living) resulted useful for assessment of disability in Parkinson's disease.

OBJECTIVE: To evaluate the motor experiences of daily living section of the Movement Disorders Society-Unified Parkinson's Disease Rating Scale (MDS-UPDRS M-EDL) for assessing disability in PD patients; to determine the association between disability and quality of life; and to identify cut-off score ranges for no, mild, moderate and severe disability with this measure. METHODS: International, observational, cross-sectional study of 435 PD patients, assessed with: MDS-UPDRS, Hoehn and Yahr staging, Rapid Assessment of Disability Scale, Clinical Impression of Severity Index for PD, Parkinson's Disease Questionnaire-8 and EQ-5D. Descriptive statistics, Spearman's rank correlation coefficients, Kruskal-Wallis test for group comparisons, ordinal logistic regression analysis for setting cut-off values and a step-wise multiple linear regression model were calculated. RESULTS: MDS-UPDRS M-EDL correlated 0.70-0.80 with other disability measures, and -0.46 to 0.74 with quality of life scales. Scores significantly increased with higher disease duration and severity (p < 0.001). Cut-off values for the M-EDL were: 0-2 points, no disability; 3-16, mild; 17-31, moderate; and 32 points or more, severe. Linear regression analysis identified the MDS-UPDRS nM-EDL section as the main determinant of M-EDL, followed by the rest of MDS-UPDRS sections (explained variance: 59%). CONCLUSIONS: MDS-UPDRS M-EDL proved to be useful for assessing disability in PD.

Quality of life and burden in caregivers for patients with Parkinson's disease: concepts, assessment and related factors.

Caregivers of Parkinson's disease patients face responsibilities stemming from providing assistance to a person, usually a family member, who suffers a progressively disabling disease characterized by both motor and nonmotor symptoms. These circumstances impact on the physical, emotional and psychosocial aspects of the caregivers' lives and, therefore, on their quality of life (QoL). Studies have identified factors related to caregivers' global QoL and health-related QoL, causing caregivers distress and affecting their QoL. These factors are related to patients' and caregivers' characteristics and may be classified as sociodemographic, psychological and disease related. Caregiver's burden refers to the multiplicity of difficulties ensuing as a consequence of caring, including, for example, health problems, modification of habits, economic loss and QoL deterioration. Therefore, burden-related factors are also briefly reviewed. The implementation of effective interventions to preserve the caregiver's wellbeing and allow the patients to remain at home and be properly assisted is a pragmatic consequence of this knowledge.