An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

A randomized controlled trial evaluating the quality of life and the sense of coherence in seniors wearing complete conventional dentures or mandibular two-implant overdentures

La supériorité des prothèses mandibulaires retenues par deux implants (IODs) sur les prothèses conventionnelles (CDs) nécessitent d’être éclaircies notamment en rapport à leur influence sur la qualité de vie reliée à la santé bucco-dentaire (OHRQoL) ainsi que sur la stabilité de cet effet de traitement. De plus, l’influence des facteurs psychologiques, tel que le sens de cohérence (SOC), sur l’effet de traitement reste encore inconnue. Le but de cette étude est de déterminer l’amplitude de l’influence du port des IODs et des CDs sur l’OHRQoL et d’évaluer la stabilité de l’effet de traitement dans le temps, tout en prenant en considération le niveau du SOC. MÉTHODOLOGIE: Des participants édentés (n=172, âge moyen 71, SD = 4.5) ayant reçu des CDs ou des IODs ont été suivis sur une période de deux ans. L’OHRQoL a été évaluée à l’aide du questionnaire « Oral Health Impact Profile (OHIP -20) » et ce avant le traitement et à chacun des deux suivis. Le SOC a été évalué à l’aide du questionnaire « The Orientation to Life (SOC -13) » à chacun des deux suivis. Des analyses statistiques ont été effectuées pour évaluer les différences intra et entre groupes (analyses statistiques descriptives, bivariées et multivariées). RÉSULTATS: Une amélioration statistiquement significative de l’OHRQoL entre les statuts avant et après traitement a été notée dans les deux groupes (Wilks’s Lambda = 0.473, F (1,151) = 157.31, p < 0.0001). L’amplitude de l’effet du traitement IOD est 1.5 fois plus grande que celle du traitement CD. Ces résultats ont été stables pendant les deux années d’étude et ils n’ont pas été influencés par le SOC. CONCLUSION: Le traitement IOD amène une meilleure OHRQoL à long terme en comparaison avec le traitement CD et ce sans influence du niveau du SOC. Ces résultats sont cliniquement significatifs et confirment la supériorité des IODs sur les CDs.

Conways Game of Life JavaScript Exercise

For students learning JavaScript programming, this exercise sets out a fairly complete template for a DHTML implementation of Life. Students have to program the missing sections of code and attempt the extra features described. Only I have the password to unlock the solution!

Species 2000 & ITIS Catalogue of Life, Annual Checklist

The Species 2000 & ITIS Catalogue of Life is planned to become a comprehensive catalogue of all known species of organisms on Earth by the year 2011. Rapid progress has been made recently and this, the sixth edition of the Annual Checklist, contains 884,552 species, approximately half of all known organisms. The present Catalogue is compiled with sectors provided by 37 taxonomic databases from around the world. Many of these contain taxonomic data and opinions from extensive networks of specialists, so that the complete work contains contributions from an estimated 2-3,000 specialists from throughout the taxonomic profession. The work of the Species 2000 and ITIS teams is to peer review databases, select appropriate sectors and to integrate the sectors into a single coherent catalogue with a single hierarchical classification. It is planned in future to introduce alternative taxonomic treatments and alternative hierarchies, but an important feature is that for those users who wish to use it, a single preferred catalogue, based on peer reviews, will continue to be provided.

The Huntington's Disease health-related Quality of Life questionnaire (HDQoL): a disease-specific measure of health-related quality of life

Hocaoglu MB, Gaffan EA, Ho AK. The Huntington's disease health-related quality of life questionnaire: a disease-specific measure of health-related quality of life. Huntington's disease (HD) is a genetic neurodegenerative disorder characterized by motor, cognitive and psychiatric disturbances, and yet there is no disease-specific patient-reported health-related quality of life outcome measure for patients. Our aim was to develop and validate such an instrument, i.e. the Huntington's Disease health-related Quality of Life questionnaire (HDQoL), to capture the true impact of living with this disease. Semi-structured interviews were conducted with the full spectrum of people living with HD, to form a pool of items, which were then examined in a larger sample prior to data-driven item reduction. We provide the statistical basis for the extraction of three different sets of scales from the HDQoL, and present validation and psychometric data on these scales using a sample of 152 participants living with HD. These new patient-derived scales provide promising patient-reported outcome measures for HD.

Species 2000 & ITIS Catalogue of Life, 2012 Annual Checklist

The Species 2000 & ITIS Catalogue of Life is planned to become a comprehensive catalogue of all known species of organisms on Earth. Rapid progress has been made recently and this, the twelfth edition of the Annual Checklist, contains 1,404,038 species. Please note that this is probably just slightly over 2/3 of the world's known species. This means that for many groups it continues to be deficient, and users will notice that many species are still missing from the Catalogue. The present Catalogue is compiled with sectors provided by 115 taxonomic databases from around the world. Many of these contain taxonomic data and opinions from extensive networks of specialists, so that the complete work contains contributions from more than 3,000 specialists from throughout the taxonomic profession. Species 2000 and ITIS teams peer review databases, select appropriate sectors and integrate the sectors into a single coherent catalogue with a single hierarchical classification. It is planned to introduce alternative taxonomic treatments and alternative classifications, but an important feature is that for those users who wish to use it, a single preferred catalogue, based on peer reviews, will continue to be provided.

Quality of life and its association with cardiovascular risk factors in a community health care program population

OBJECTIVE: To evaluate quality of life in a population that attended a specific community event on health care education, and to investigate the association of their quality of life with the presence of cardiovascular risk factors INTRODUCTION: Interest in health-related quality of life is growing worldwide as a consequence of increasing rates of chronic disease. However, little is known about the association between quality of life and cardiovascular risk factors. METHODS: This study included 332 individuals. Demographics, blood pressure, body mass index, and casual glycemia were evaluated. The brief version of the World Health Organization Quality of Life questionnaire on quality of life was given to them. The medians of the scores obtained for the physical, psychological, emotional, and environmental domains were used as cutoffs to define higher and lower scores. A multinomial logistic regression model was used to define the parameters associated with lower scores. RESULTS: Diabetes mellitus, dyslipidemia, and obesity were associated with lower scores in the physical domain. Dyslipidemia was also associeted with lower scores in the psychological domain. Male gender and regular physical activity had protective effects on quality of life. Aging was inversely associated with decreased quality of life in the environmental domain. CONCLUSION: The presence of cardiovascular risk factors is related to a decreased quality of life. Conversely, male gender and regular physical activity had protective effects on quality of life. These findings suggest that exercising should be further promoted by health-related public programs, with a special focus on women.

Oral health-related quality of life and satisfaction before and after treatment with complete dentures in a Dental School in Brazil

Purpose: The aim of this study was to evaluate the impact of treatment with new complete dentures on oral health-related quality of life and satisfaction of edentulous patients attending the Prosthodontic Department in a Dental School in Brazil. Methods: A total of 70 edentulous subjects (37-86 years) treated by undergradute students at the Araçatuba Dental School, University of State of São Paulo, were accessed. A specific questionnaire for edentulous patients (EDENT) based on the Oral Health Impact Profile (OHIP-EDENT) was applied to collect information on patient oral health-related quality of life. Questions related to the personal satisfaction of the edentulous patients with their complete dentures were also included. The patients were accessed before the treatment, and 3 months after receiving the new dentures. Results: After rehabilitation with new complete dentures, all domains of OHIP-EDENT showed significant improvements. There was also a significant improvement in patient satisfaction after placement of new complete dentures. Furthermore, it was possible to observe association between upper denture satisfaction and age. Conclusion: Conventional complete dentures may have a positive impact on oral health-related quality of life and satisfaction of edentulous patients. © 2012 Japan Prosthodontic Society.

Psoriasis: correlation between severity index (PASI) and quality of life index (DLQI) in patients assessed before and after systemic treatment

BACKGROUND: Psoriasis is a chronic inflammatory disease of the skin that affects patients of all ages and both genders. The impact of the disease on quality of life is greater among patients with moderate to severe psoriasis. OBJECTIVE: to establish a correlation between the psoriasis area and severity index (PASI) and the Dermatology Life Quality Index (DLQI) based on a quality of life questionnaire adapted to the Brazilian context for patients with plaque psoriasis before and after systemic treatment. METHODS: This was a cross-sectional, descriptive study of psoriasis patients who did not undergo treatment or who manifested clinical activity of the disease. Patients were evaluated according to the PASI and the quality of life questionnaire adapted to the Brazilian context before and 60 days after systemic treatment. RESULTS: Thirty-five patients participated in the study. Twenty-six were men, with a mean age of 46 years. There was no correlation between the PASI and the quality of life questionnaire adapted to the Brazilian context, but there was a correlation between the PASI and some items of the quality of life questionnaire adapted to the Brazilian context, such as jobs involving public contact. CONCLUSION: The non-correlation between the PASI and the quality of life questionnaire adapted to the Brazilian context in this work may be associated with a history of chronic disease, which implies greater acceptance of the illness, or may be related to the low income and social status of the patients studied. The correlation observed among patients with careers involving public contact suggests that some professions are more impacted by the disease. It may be necessary to adapt the quality of life questionnaire to patients with a low income and cultural and social limitations. The small sample size (n=35 patients) and the short follow-up period of 60 days were some of the limitations of this work.

Measures of quality of life in children with cochlear implant: systematic review

The use of cochlear implant (CI) in children enables the development of listening and communication skills, allowing the child's progress in school and to be able to obtain, maintain and carry out an occupation. However, the progress after the CI has different results in some children, because many children are able to interact and participate in society, while others develop limited ability to communicate verbally. The need for a better understanding of CI outcomes, besides hearing and language benefits, has spurred the inclusion of quality of life measurements (QOL) to assess the impact of this technology. OBJECTIVE: Identify the key aspects of quality of life assessed in children with cochlear implant. METHOD: Through a systematic literature review, we considered publications from the period of 2000 to 2011. CONCLUSION: We concluded that QOL measurements in children include several concepts and methodologies. When referring to children using CI, results showed the challenges in broadly conceptualizing which quality of life domains are important to the child and how these areas can evolve during development, considering the wide variety of instruments and aspects evaluated.

Low dynamic muscle strength and its associations with fatigue, functional performance, and quality of life in premenopausal patients with systemic lupus erythematosus and low disease activity: a case–control study

Abstract Background The purpose of the present study was to compare dynamic muscle strength, functional performance, fatigue, and quality of life in premenopausal systemic lupus erythematosus (SLE) patients with low disease activity versus matched-healthy controls and to determine the association of dynamic muscle strength with fatigue, functional performance, and quality of life in SLE patients. Methods We evaluated premenopausal (18–45 years) SLE patients with low disease activity (Systemic lupus erythematosus disease activity index [SLEDAI]: mean 1.5 ± 1.2). The control (n = 25) and patient (n = 25) groups were matched by age, physical characteristics, and the level of physical activities in daily life (International Physical Activity Questionnaire IPAQ). Both groups had not participated in regular exercise programs for at least six months prior to the study. Dynamic muscle strength was assessed by one-repetition maximum (1-RM) tests. Functional performance was assessed by the Timed Up and Go (TUG), in 30-s test a chair stand and arm curl using a 2-kg dumbbell and balance test, handgrip strength and a sit-and-reach flexibility test. Quality of life (SF-36) and fatigue were also measured. Results The SLE patients showed significantly lower dynamic muscle strength in all exercises (leg press 25.63%, leg extension 11.19%, leg curl 15.71%, chest press 18.33%, lat pulldown 13.56%, 1-RM total load 18.12%, P < 0.001-0.02) compared to the controls. The SLE patients also had lower functional performance, greater fatigue and poorer quality of life. In addition, fatigue, SF-36 and functional performance accounted for 52% of the variance in dynamic muscle strength in the SLE patients. Conclusions Premenopausal SLE patients with low disease activity showed lower dynamic muscle strength, along with increased fatigue, reduced functional performance, and poorer quality of life when compared to matched controls.

Association between symptoms and quality of life in patients with schizophrenia: a pooled analysis of changes over time

Quality of life is an important outcome in the treatment of patients with schizophrenia. It has been suggested that patients' quality of life ratings (referred to as subjective quality of life, SQOL) might be too heavily influenced by symptomatology to be a valid independent outcome criterion. There has been only limited evidence on the association of symptom change and changes in SQOL over time. This study aimed to examine the association between changes in symptoms and in SQOL among patients with schizophrenia. A pooled data set was obtained from eight longitudinal studies that had used the Brief Psychiatric Rating Scale (BPRS) for measuring psychiatric symptoms and either the Lancashire Quality of Life Profile or the Manchester Short Assessment of Quality of Life for assessing SQOL. The sample comprised 886 patients with schizophrenia. After controlling for heterogeneity of findings across studies using linear mixed models, a reduction in psychiatric symptoms was associated with improvements in SQOL scores. In univariate analyses, changes in all BPRS subscales were associated with changes in SQOL scores. In a multivariate model, only associations between changes in the BPRS depression/anxiety and hostility subscales and changes in SQOL remained significant, with 5% and 0.5% of the variance in SQOL changes being attributable to changes in depression/anxiety and hostility respectively. All BPRS subscales together explained 8.5% of variance. The findings indicate that SQOL changes are influenced by symptom change, in particular in depression/anxiety. The level of influence is limited and may not compromise using SQOL as an independent outcome measure.

Age Related Differences in Individual Quality of Life Domains in Youth with Type 1 Diabetes.

BACKGROUND: Investigating individual, as opposed to predetermined, quality of life domains may yield important information about quality of life. This study investigated the individual quality of life domains nominated by youth with type 1 diabetes. METHODS: Eighty young people attending a diabetes summer camp completed the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting interview, which allows respondents to nominate and evaluate their own quality of life domains. RESULTS: The most frequently nominated life domains were 'family', 'friends', 'diabetes', 'school', and 'health' respectively; ranked in terms of importance, domains were 'religion', 'family', 'diabetes', 'health', and 'the golden rule'; ranked in order of satisfaction, domains were 'camp', 'religion', 'pets', and 'family' and 'a special person' were tied for fifth. Respondent age was significantly positively associated with the importance of 'friends', and a significantly negatively associated with the importance of 'family'. Nearly all respondents nominated a quality of life domain relating to physical status, however, the specific physical status domain and the rationale for its nomination varied. Some respondents nominated 'diabetes' as a domain and emphasized diabetes 'self-care behaviors' in order to avoid negative health consequences such as hospitalization. Other respondents nominated 'health' and focused more generally on 'living well with diabetes'. In an ANOVA with physical status domain as the independent variable and age as the dependent variable, participants who nominated 'diabetes' were younger (M = 12.9 years) than those who nominated 'health' (M = 15.9 years). In a second ANOVA, with rationale for nomination the physical status domain as the independent variable, and age as the dependent variable, those who emphasized 'self care behaviors' were younger (M = 11.8 years) than those who emphasized 'living well with diabetes' (M = 14.6 years). These differences are discussed in terms of cognitive development and in relation to the decline in self-care and glycemic control often observed during adolescence. CONCLUSIONS: Respondents nominated many non-diabetes life domains, underscoring that QOL is multidimensional. Subtle changes in conceptualization of diabetes and health with increasing age may reflect cognitive development or disease adjustment, and speak to the need for special attention to adolescents. Understanding individual quality of life domains can help clinicians motivate their young patients with diabetes for self-care. Future research should employ a larger, more diverse sample, and use longitudinal designs.

Histoire naturelle des quadrupèdes ovipares et des serpens / par le comte Lacepède.

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