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Background: Following the active ageing model based on the Health, Lifelong Learning, Participation and Security pillars, this research has a twofold objective: i) to classify older adults according to active ageing profiles, taking into account the four pillars, and ii) to ascertain the relationship between the profiles and personal and contextual factors, as well as well-being and quality of life in old age., Methods: A study sample of 5,566 Spanish older adults who participated in wave 6 of the Survey of Health, Ageing and Retirement in Europe (SHARE) was included. Data were analysed in different steps applying several statistical analyses (Principal Component, Cluster, Discriminant, Multiple Correspondence and bivariate analysis with Pearson chi-square and ANOVA)., Results: Five older adult profiles were obtained (I: with moderate activity; II: quasi-dependents; III: with active ageing-limiting conditions; IV: with diverse and balanced activity; V: with excellent active ageing conditions). The first three profiles were characterised by subjects with a high average age, low educational level, who were retired or housewives, and who perceived a moderate level of loneliness, satisfaction with the social network and quality of life, as well as having a larger family network, but living in small households or alone. In contrast, the latter two profiles showed better personal and contextual conditions, well-being and quality of life., Discussion and Conclusions: The multidimensional approach to active ageing followed in this article has revealed the presence of several older adult profiles, which are confined to groups with better or worse active ageing conditions. In this context, if ageing is a process that reflects the previous way of life, intervention priorities will have to consider actions that promote better conditions during the life cycle., Competing Interests: The authors have declared that no competing interests exist.

Growing evidence suggests that non-motor symptoms (NMS) in Parkinson's disease (PD) have differential progression patterns that have a different natural history from motor progression and may be geographically influenced. We conducted a cross-sectional analysis of 1607 PD patients of whom 1327 were from Europe, 208 from the Americas, and 72 from Asia. The primary objective was to assess baseline non-motor burden, defined by Non-Motor Symptoms Scale (NMSS) total scores. Other aims included identifying the factors predicting quality of life, differences in non-motor burden between drug-naïve and non-drug-naïve treated patients, and non-motor phenotypes across different geographical locations. Mean age was 65.9 ± 10.8 years, mean disease duration 6.3 ± 5.6 years, median Hoehn and Yahr stage was 2 (2-3), and 64.2% were male. In this cohort, mean NMSS scores were 46.7 ± 37.2. Differences in non-motor burden and patterns differed significantly between drug-naïve participants, those with a disease duration of less than five years, and those with a duration of five years or over (p ≤ 0.018). Significant differences were observed in geographical distribution (NMSS Europe: 46.4 ± 36.3; Americas: 55.3 ± 42.8; Asia: 26.6 ± 25.1; p < 0.001), with differences in sleep/fatigue, urinary, sexual, and miscellaneous domains (p ≤ 0.020). The best predictor of quality of life was the mood/apathy domain (β = 0.308, p < 0.001). This global study reveals that while non-motor symptoms are globally present with severe NMS burden impacting quality of life in PD, there appear to be differences depending on disease duration and geographical distribution.

Objectives: To validate the Living with Chronic Illness (LW-CI) Scale in patients with chronic obstructive pulmonary disease (COPD)., Design: Observational, cross-sectional validation study with retest. Acceptability, reliability, precision and construct validity were tested., Setting: The study took place in primary and secondary specialised units of public and private hospitals of Spain and Colombia., Participants: The study included 612 patients with COPD assessed from May 2018 to May 2019. A consecutive cases sampling was done. Inclusion criteria included: (A) patients with a diagnosis of COPD; (B) native Spanish speaking; (C) able to read and understand questionnaires; and (D) able to provide informed consent. Exclusion criteria included: (A) cognitive deterioration and (B) pharmacological effect or disorder that could disrupt the assessment., Results: The LW-CI-COPD presented satisfactory data quality, with no missing data or floor/ceiling effects, showing high internal consistency for all the domains (Cronbach's alpha for the total score 0.92). Test-retest reliability was satisfactory (intraclass correlation coefficient=0.92). The LW-CI-COPD correlated 0.52-0.64 with quality of life and social support measures. The scale demonstrated satisfactory known-groups validity, yielding significantly different scores in patients grouped according to COPD severity levels., Conclusions: This has been the first validation study of the LW-CI-COPD. It is a feasible, reliable, valid and precise self-reported scale to measure living with COPD in the Spanish-speaking population. Therefore, it could be recommended for research and clinical practice to measure this concept and evaluate the impact of centred-care interdisciplinary interventions based on the patients' perspective, focused on providing holistic and comprehensive care to patients with COPD., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

It is necessary to develop self-reported instruments that evaluate the process of living with chronic heart failure (HF) holistically. The Living with Chronic Illness Scale-HF (LW-CI-HF) is the only available tool to evaluate how patients are living with HF. The aim is to analyse the psychometric properties of the LW-CI scale in the HF population. An international, cross-sectional validation study was carried out in 603 patients living with HF from Spain and Colombia. The variables measured were living with HF, perceived social support, satisfaction with life, quality of life and global impression of severity. The LW-CI-HF scale presented good data quality and acceptability. All domains showed high internal consistency with Cronbach's alpha coefficient ≥ 0.7. The intraclass correlation coefficient for the total score was satisfactory (0.9) in test-retest reliability. The LW-CI-HF correlated 0.7 with social support and quality of life measures. Standard error of measurement was 6.5 for total scale. The LW-CI-HF scale is feasible, reliable and valid. However, results should be taken with caution in order to be used in clinical practice to evaluate the complex process of living with HF. Further research is proposed.

Aims and Objectives: To identify the personal- and disease-related factors that are associated with living with Parkinson's disease., Background: Living with Parkinson's disease affects the physical, psychological, social and spiritual areas of the person. Health professionals need to know which factors influence the daily living with Parkinson's disease, in order to facilitate a positive living., Design: A multicentre cross-sectional study., Methods: A total of 324 patients with Parkinson's disease diagnoses were included in the study through a consecutive case sampling. Data were collected from January-June 2015, in specialised units of movement disorders of public and private and community centres, from Spain, Argentina, Mexico, Ecuador and Cuba. Nine measures were applied to evaluate personal-related factors (age, gender, psychosocial function, satisfaction with life, social support, home economical situation) and Parkinson's disease-related factors (duration of disease, motor symptoms and non-motor symptoms). The STROBE checklist was used to ensure quality reporting during the study (see File S1). Multiple linear regression analysis was carried out., Results: Results indicated that social support, followed by satisfaction with life and home economical situation are the only three factors that significantly influence in living with Parkinson's disease. The rest of the factors analysed did not present significant influence in the daily living with this neurodegenerative disease., Conclusion: This study highlights the necessity to put more emphasis on the person and his/her daily living with the condition and less on symptoms and treatment. Health professionals need to develop person-centred interventions that also deal with other elements of the experience of living with a long-term condition like Parkinson's disease., Relevance to Clinical Practice: Interventions to foster positive living with Parkinson's disease in clinical practice should integrate strategies to tackle and prevent loneliness and interagency elements to increase community resources and systems of support., (© 2019 John Wiley & Sons Ltd.)

Background: The relationship between Health-Related Quality of Life (HRQoL) and MDS-UPDRS has not been fully studied so far. The aim of this study was to evaluate the relationship between all MDS-UPDRS components and HRQoL in a representative international cohort of PD patients., Methods: We collected demographic and disease-related data as well as MDS-UPDRS and PDQ8 scales. Data were analyzed using correlations between PDQ8 and all MDS-UPDRS items, subsequently two hierarchical multiple regressions were performed, first between the scores of the MDS-UPDRS Parts and PDQ8 and second between individual items from those Parts demonstrating significant relationship to PDQ8 scores in the first regression. LASSO regression analyses were performed to evaluate the relationship between PDQ8 and all individual MDS-UPDRS items., Results: A total of 3206 PD patients were included in the study. In the first regression analysis, PDQ8 was significantly related to MDS-UPDRS parts I and II, but not to III and IV. In the second regression model, significant contributions to PDQ8 were found for Part I items Fatigue, Pain, Depressed mood, Apathy; and Part II items Dressing, Doing hobbies, Freezing, Speech and Tremor. In the LASSO analysis, six Part I, seven Part II, three Part III and one Part IV items contributed to PDQ8 scores. The five items most significantly related to the model were Depressed mood, Dressing, Apathy, Pain and Fatigue., Conclusions: This is so far the largest study related to HRQoL issues in PD. Restrictions in activities of daily living and non-motor symptoms significantly contribute to HRQoL in PD., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

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., (© 2016 Japan Geriatrics Society.)

Background: The goal of the study was to analyze the factors associated with quality of life (QoL) in institutionalized older adults with dementia, based on self and proxy ratings, and if these characteristics differ by dementia severity., Methods: Cross-sectional study of 525 people with dementia (PwD) and their caregivers (professional or family caregivers). Two different QoL questionnaires, leading to three measures, were used: QoL in Alzheimer's disease scale (QOL-AD), self and proxy-rated, and QoL in late-stage dementia scale (QUALID), proxy-rated. Multivariate linear regression models were tested for each QoL measure and for mild/moderate and severe stages of dementia., Results: Multiple regression analyses showed a significant association between the three QoL measures and depression. Functional ability was significantly associated with QoL when assessed by proxy. Other factors such as education level, leisure activities and frequency of visits were significantly related with QOL-AD by proxy. The associated factors that differed by dementia severity were education level for moderate dementia, and frequency of visits and who answered the questionnaire (professional vs. family member) for severe dementia., Conclusions: QoL was consistently associated with depressive symptoms independently of the measures as well as functional ability and social leisure activities when the QoL questionnaire was rated by proxy. Treating depressive symptoms, increasing social activities and maintaining the functional ability may decrease the deterioration of QoL in institutionalized older adults with dementia.

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.

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., (Copyright © 2015 Elsevier Ltd. All rights reserved.)

Quality of life (QoL) is a patient-reported outcome frequently included in Parkinson's disease (PD) clinical trials as a secondary or tertiary endpoint. However, QoL is an important variable that reflects the impact of disease and treatment from the patients' perspective. In a chronic, neurodegenerative disease such as PD, with a wide range of complex symptoms, QoL provides valuable and comprehensive information on the patients' health status. This narrative review aims to evaluate the effect of specific PD treatments currently in use on patients' QoL measured with the Parkinson's Disease Questionnaire, 39-item (PDQ-39) or 8-item (PDQ-8) version. A quantification of this effect is provided by calculation of the relative change and effect size. These two parameters allow an intuitive standardized approach to the importance of change based on its magnitude. Some high-quality studies (Level I) were found for levodopa (immediate- or extended-release formulations), levodopa with added-on catechol-O-methyltransferase (COMT) inhibitors, levodopa/carbidopa gel for intestinal infusion, some dopamine agonists (ropinirole, cabergoline, pergolide), and the monoamine oxidase B (MAO-B) inhibitor safinamide. As a whole, these studies found a beneficial effect of variable magnitude, weak to moderate, on patients' QoL. Studies with a lower level of evidence or not providing enough data to estimate relative change and effect size, including those for the apomorphine subcutaneous pump, also reported improvement of QoL, but the evidence was insufficient to confirm the effect. More high-quality studies focused on QoL are needed to determine the real impact of PD drug treatments for this important outcome.

Background: As the population ages, the prevalence of multimorbidity also increases, with consequences to several health outcomes such as disability and quality of life (QoL). This study aimed at analyzing the relationships between chronic conditions, disability, and QoL of older adults with multimorbidity in Spain., Method: Data on older adults aged 65 years or more, with at least two chronic health conditions were drawn from three cohort studies. Sample size was 705, 443, and 4995, respectively. For each cohort, the impact of the following chronic health conditions was analyzed: asthma, cancer, cardiac, diabetes, hypertension, mental health disorders, osteoarticular conditions, and stroke. Disability and QoL measures varied according to the survey., Results: In older adults with multimorbidity, the most prevalent conditions were osteoarticular (59.08-67.80%) and hypertension (50.64-60.03%). The presence of disability was significantly associated to having osteoarticular (OR range: 1.53 to 2.646), diabetes (OR: 1.86 to 1.71), or mental health disorders (OR: 2.19 to 3.36) in most cohorts. Disability (OR: 1.67 to 7.67), osteoarticular conditions (OR: 3.37 to 5.10), and mental health disorders (OR: 1.83 to 4.27) showed the highest effects on lower QoL than the population., Conclusion: The presence of disability and diverse chronic conditions has a negative effect on QoL of older adults affected by multimorbidity in Spain. Public health and primary care interventions focusing on the integrated care of older adults with multimorbidity might give special attention to mental health and osteoarticular conditions., (Copyright © 2015 European Federation of Internal Medicine. Published by Elsevier B.V. All rights reserved.)

Purpose: This study aims to assess the change in and predictive factors of the quality of life (QoL) of institutionalized older adults with dementia over a 20-month period., Methods: Information was used from a follow-up study conducted over an average period of 19.61 ± 1.93 months on a sample of 274 institutionalized older adults aged 60 or over, diagnosed with dementia. Two linear regression models were built to predict change in the EQ-5D index and the quality of life in Alzheimer's disease (QOL-AD) scale, taking as independent variables: sociodemographic characteristics and measures of functional ability (Barthel Index), depression in dementia (Cornell Scale), number of chronic health problems, cognitive level (MEC, the Spanish Mini-Mental State Examination) and severity of dementia (Clinical Dementia Rating) at baseline., Results: The majority of the participants were women (81.75 %) with an average age of 84.70 ± 6.51 years, single (78.15 %), with severe dementia and moderate functional dependence. There was a significant decrease on the EQ-5D, EQ-VAS and QOL-AD between baseline and follow-up scores. The main predictors of QoL of the institutionalized older adults with dementia were the number of chronic problems and baseline scores of the QoL measures., Conclusions: A significant decrease in the QoL of institutionalized older adults was observed over a 20-month period. Results suggest that interventions aimed at reducing the number of chronic medical conditions may have a beneficial effect on older adults' QoL.

Aim: Measurement of health-related quality of life in people with dementia is a challenge, because of their special characteristics and the difficulties that this term entails itself. The present study aimed at assessing the psychometric properties of the EQ-5D rated by a familiar or a professional caregiver of institutionalized older adults with dementia., Methods: We analyzed the EQ-5D psychometric properties from 525 questionnaires rated by proxy, in a sample of institutionalized older adults with dementia., Results: The mean EQ-5D index score was 0.11 ± 0.38, and 51.54 ± 21.47 for the visual analog scale. The intraclass correlation coefficient was 0.72. Regarding internal consistency, Cronbach's alpha was 0.64, and the item-total correlation ranged from 0.33 to 0.53. Exploratory factor analysis identified a functional and a subjective factor, accounting for 67.35% of the variance. Convergent validity of EQ-5D with Quality of Life Alzheimer's Disease by proxy and Quality of Life in Late-stage Dementia scales was satisfactory (r = 0.36-0.58). The EQ-5D showed appropriate discriminative validity among patients grouped into several categories. Multiple linear regression models, using EQ-index and visual analog scale as dependent variables, identified dependence level, proxy characteristics, leisure and comorbidity as determinants of quality of life., Conclusions: Despite some limitations in the more subjective dimensions, the proxy-rated EQ-5D showed satisfactory psychometric properties in the present study, suggesting that it is a valid and alternative instrument to assess quality of life in institutionalized older people with dementia., (© 2013 Japan Geriatrics Society.)

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.

The objective is to identify the differences and the main factors influencing health status and well-being variables between institutionalized and non-institutionalized older adults, as well as the interaction effect of institutionalization and age. Data on a total of 468 older adults from a national survey on non-institutionalized and from a study on institutionalized older people were analyzed. Socio-demographic variables and measures on well-being (Personal Well-being Index, PWI), health status (EQ-5D), functional ability (Barthel Index), depression (Hospital Anxiety and Depression Scale-Depression subscale), loneliness and comorbidity were used. Analysis of variance and Kruskal-Wallis tests to examine differences between groups and multiple regression analyses to identify factors associated to health and well-being were performed. Significant differences in health status variables, but not in well-being were detected between groups. Controlling for age, differences in health status (EQ-VAS) were found to be not significant in both groups. In the non-institutionalized group, people aged 78 years or more reported a significantly lower well-being (PWI) than younger counterparts. Step-wise multiple regression analysis showed that depression, functional dependence, loneliness and sex were associated with health status; while depression, health status, loneliness and the interaction of age-institutionalization were related to well-being. The results suggest that age influences community-dwelling older adults' well-being to a greater extent than it does to institutionalized older people. This finding has implications for resource allocation and interventions addressed to improve health and well-being in older adults.

Background: Non-motor symptoms are detrimental to health-related quality of life (HRQoL) of Parkinson's disease patients. In this study, the Non-Motor Symptoms Scale (NMSS) was used to assess the impact of the non-motor symptoms on HRQoL of Parkinson's disease patients., Methods: In a multicenter, international, cross sectional study on 411 Parkinson's disease patients, the NMSS was applied along with clinical (Hoehn and Yahr staging and SCOPA-Motor) and HRQoL measures (PDQ-39, and EQ-5D). Prevalence of non-motor symptoms was determined also through the NMSS. The association of NMSS and SCOPA-Motor with HRQoL measures and the differences in HRQoL scores between patients with and without non-motor symptoms in each NMSS domain were estimated by non-parametric statistics. Predictors of HRQoL were sought through multiple linear regression analyses., Results: Nocturia (68.4% of the sample), fatigue (65.9%), and dribbling saliva (56.7%), were the most frequent complaints. Total NMSS score: (1) showed a higher correlation coefficient (r(S) = 0.70) with the PDQ-39 Summary Index (SI) than SCOPA-Motor (r(S) = 0.58); (2) showed high-moderate correlation (r(S) = 0.60 - 0.38) with all PDQ-39 domains; and (3) was the best predictor of HRQoL as measured by the PDQ-39 SI. For each NMSS domain, patients with symptoms had significantly worse HRQoL scores than patients without symptoms., Discussion: To our knowledge, this is the first study to determine in a holistic manner the impact of the non-motor symptoms on HRQoL of Parkinson's disease patients. The results show that non-motor symptoms have, as a whole, a greater impact on HRQoL than motor symptoms and non-motor symptoms progression contributes importantly to HRQoL decline in patients with Parkinson's disease., (Copyright © 2011 Movement Disorder Society.)

Background: The Living with Chronic Illness (LW‐CI) Scale is a comprehensive patient‐reported outcome measure that evaluates the complex process of living with long‐term conditions. Objective: This study aimed to analyse the psychometric properties of the LW‐CI scale according to the classic test theory and the Rasch model among individuals living with different long‐term conditions. Design: This was an observational, international and cross‐sectional study. Methods: A total of 2753 people from six Spanish‐speaking countries living with type 2 diabetes mellitus, chronic obstructive pulmonary disease, chronic heart failure, Parkinson's disease, hypertension and osteoarthritis were included. The acceptability, internal consistency and validity of the LW‐CI scale were analysed using the classical test theory, and fit to the model, unidimensionality, person separation index, item local independency and differential item functioning were analysed using the Rasch model. Results: Cronbach's α for the LW‐CI scale was.91, and correlation values for all domains of the LW‐CI scale ranged from.62 to.68, except for Domain 1, which showed correlation coefficients less than.30. The LW‐CI domains showed a good fit to the Rasch model, with unidimensionality, item local independency and moderate reliability providing scores in a true interval scale. Except for two items, the LW‐CI scale was free from bias by long‐term condition type. Discussion: After some adjustments, the LW‐CI scale is a reliable and valid measure showing a good fit to the Rasch model and is ready for use in research and clinical practice. Future implementation studies are suggested. Patient and Public Contribution: Patient and public involvement was conducted before this validation study ‐ in the pilot study phase. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Objective: To develop and validate a novel 14‐item self‐completed questionnaire (in English and German) enquiring about the presence of non‐motor symptoms (NMS) during the past month in patients with craniocervical dystonia in an international multicenter study. Methods: The Dystonia Non‐Motor Symptoms Questionnaire (DNMSQuest) covers seven domains including sleep, autonomic symptoms, fatigue, emotional well‐being, stigma, activities of daily living, sensory symptoms. The feasibility and clinimetric attributes were analyzed. Results: Data from 194 patients with CD (65.6% female, mean age 58.96 ± 12.17 years, duration of disease 11.95 ± 9.40 years) and 102 age‐ and sex‐matched healthy controls (66.7% female, mean age 55.67 ± 17.62 years) were collected from centres in Germany and the UK. The median total NMS score in CD patients was 5 (interquartile range 3–7), significantly higher than in healthy controls with 1 (interquartile range 0.75–2.25) (P < 0.001, Mann–Whitney U‐test). Evidence for intercorrelation and convergent validity is shown by moderate to high correlations of total DNMSQuest score with motor symptom severity (TWSTRS: rs = 0.61), clinical global impression (rs = 0.40), and health‐related quality of life measures: CDQ‐24 (rs = 0.74), EQ‐5D index (rs = −0.59), and scale (rs = −0.49) (all P < 0.001). Data quality and acceptability was very satisfactory. Interpretation: The DNMSQuest, a patient self‐completed questionnaire for NMS assessment in CD patients, appears robust, reproducible, and valid in clinical practice showing a tangible impact of NMS on quality of life in CD. As there is no specific, comprehensive, validated tool to assess the burden of NMS in dystonia, the DNMSQuest can bridge this gap and could easily be integrated into clinical practice. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Quality of life (QoL) is a patient-reported outcome frequently included in Parkinson's disease (PD) clinical trials as a secondary or tertiary endpoint. However, QoL is an important variable that reflects the impact of disease and treatment from the patients' perspective. In a chronic, neurodegenerative disease such as PD, with a wide range of complex symptoms, QoL provides valuable and comprehensive information on the patients' health status. This narrative review aims to evaluate the effect of specific PD treatments currently in use on patients' QoL measured with the Parkinson's Disease Questionnaire, 39-item (PDQ-39) or 8-item (PDQ-8) version. A quantification of this effect is provided by calculation of the relative change and effect size. These two parameters allow an intuitive standardized approach to the importance of change based on its magnitude. Some high-quality studies (Level I) were found for levodopa (immediate- or extended-release formulations), levodopa with added-on catechol- O-methyltransferase (COMT) inhibitors, levodopa/carbidopa gel for intestinal infusion, some dopamine agonists (ropinirole, cabergoline, pergolide), and the monoamine oxidase B (MAO-B) inhibitor safinamide. As a whole, these studies found a beneficial effect of variable magnitude, weak to moderate, on patients' QoL. Studies with a lower level of evidence or not providing enough data to estimate relative change and effect size, including those for the apomorphine subcutaneous pump, also reported improvement of QoL, but the evidence was insufficient to confirm the effect. More high-quality studies focused on QoL are needed to determine the real impact of PD drug treatments for this important outcome. [ABSTRACT FROM AUTHOR]

Abstract: 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. [Copyright &y& Elsevier]

Objective: The conceptual framework of Quality of Life (QoL) allows approaching the knowledge of the living conditions of people in order to help establishing policies for QoL improvement. This study is aimed at examining the assessment made by older adults on their personal wellbeing and the satisfaction with life and the associated factors. A of the psychometric properties of the measurement instrument was also presented. Method: The data came from the Ageing in Spain Longitudinal Study, Pilot Survey (ELES-PS), carried out in 2011 among people 50 years old or more living in family housing in Spain. The Personal Wellbeing Index (PWI), as a multidimensional measure of QoL, was used to evaluate the subjective wellbeing. Personal, social and residential characteristics were considered as independent variables. Descriptive statistical analysis, ANOVA, correlation, factor and regression analyses were applied. Results and conclusions: The PWI had good psychometric properties and showed the convergent validity with satisfaction with life as a whole (SWLW). Unidimensional structure of the scale was also demonstrated. PWI and SWLW total scores reached 74.5%SM and 77.1%SM, respectively The best rated life domains were the satisfaction with relationships, safety and feeling part of the community. The SWLW observed significant differences in gender categories while PWI within age and social status. Both scales were associated with marital status, educational level, household size, current activity status and social status. The regression model of the PWI explained 34.2% of the variance through factors on socio-demographic and economic resources, psychosocial, health/functioning, family and social networks, leisure and residential environment. Based on these results, it would be desirable to deepen on this line from a longitudinal perspective to detect the influence of the changing conditions of the aged people in their personal well-being and life satisfaction. [ABSTRACT FROM AUTHOR]

Background: The International Wellbeing Index is a measure of general quality of life formed by two scales: the Personal Wellbeing Index (PWI) and the National Wellbeing Index (NWI). This paper studies the psychometric properties of the PWI and NWI, using Rasch analysis and classic psychometric methods.Methods: The PWI and NWI were applied to a representative sample of 1106 community-dwelling adults, aged 60 years and over, residing in Spain. Mean ± standard deviation age was 72.07 ± 7.83 years and 56.3% were women.Results: Five PWI items (achieving in life, relationships, safety, community connectedness, and future security), and five NWI items (economic situation, state of environment, social conditions, business, and national security of the country) fitted the Rasch model. After adjusting the response scale format, satisfactory fit was obtained, with good reliability (person separation index of 0.91 for both the PSI and NWI), local independency of items, and strict unidimensionality. The measures showed adequate external construct validity with related measures.Conclusions: The PWI and the NWI, with fewer items and simpler response scale formats, provided valid and reliable linear measures in older adults, according to Rasch and classic psychometric analyses. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Introduction: To explore the psychometric attributes of a new Satisfaction with Life Scale (SLS-6) in a wide Spanish-speaking population with Parkinson's disease (PD).Methods: This was an international, cross-sectional study. Several rater-based and patient-reported outcomes measures for evaluation of PD (e.g., Scales for Outcomes in Parkinson's Disease-Motor) and other constructs (e.g., Duke-UNC Functional Social Support Questionnaire, Scale for Living with Chronic Illness) were applied together with the SLS-6. Acceptability, scaling assumptions, reliability, precision, and construct validity were tested.Results: The study included 324 patients from five countries, with age (mean ± standard deviation) 66.67 ± 10.68 years. None of the SLS-6 items had missing values and all acceptability parameters fulfilled the standard criteria. Scaling assumptions allowed the calculation of a summary index from items 2 to 6, complementary to the global evaluation (item 1). For these five items, Cronbach's alpha was 0.85; the corrected item-total correlation 0.53-0.73; inter-item correlation, 0.45-0.70, with an item homogeneity index of 0.55. The standard error of measurement, based on Cronbach's alpha for a single observation, was 3.48. SLS-6 correlations were moderate to strong (rs ≥ 0.35) with the patient-reported outcomes and weak to moderate with the rater-based assessments used in the study. The SLS-6 total score was significantly different according to PD severity levels established according to Hoehn and Yahr staging, Clinical Impression of Severity Index, and Patient-Based Global Impression of Severity scale.Conclusion: The results suggest that SLS-6 is an easy, feasible, acceptable, consistent, precise and valid measure to evaluate satisfaction with life in PD patients. [ABSTRACT FROM AUTHOR]

Purpose: Health-related quality of life (HRQOL) of adults living with a chronic condition or disease is an important patient-reported outcome. There is a need to better understand the social health dimension of HRQOL among adults living with a chronic condition (with or without physical/mental disability). This study examined self-reported satisfaction with participation in social roles (SPSR) in adults, grouped by different age groups, living with a chronic condition relative to the US general population. Materials and methods: This cross-sectional survey study included a convenience sample of 1,822 community-dwelling adults living with one of four chronic conditions. Participants completed the self-report Patient Reported Outcomes Measurement Information System (PROMIS) Satisfaction with Participation in Social Roles v1.0—Short Form 7a (SPSR-SF). PROMIS SPSR-SF scores were compared with a US general population using normative data collected by PROMIS (n = 2,555). Results: Participants self-reported significantly lower SPSR (M = 45, SD = 8.3) than the US general population (M = 50, SD = 10), t(1821) = −25.65, p >.001. A regression analysis indicated that physical function explained more variance of PROMIS SPSR-SF scores than age. Conclusions: Relative to the PROMIS national sample, adults living with a chronic condition reported lower levels of SPSR. Decreased physical function was associated with lower SPSR. [ABSTRACT FROM AUTHOR]