Quality of life measurement

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Quality of life measurement and outcome in aphasia

Quality of life measurement and outcome in aphasia

The use of QLQA in the assessment of people with apha- sia focuses on the frequency of activities of life, depending on the correct use of language. It may point out gains in linguistic and communicative behaviors, due to rehabilitation training and/or personal ability of coping with disease limitation, and it shows daily personal aspects of discomfort, which are rarely evidenced by the patients, while leading them to isolation and passivity. Timely interventions by speech-language patholo- gists and occupational therapists, psychological support to patients and caregivers, and changes in communicative environments are needed to promote socialization, according to the conceptual models of the ICF. As aphasia causes com- munication impairment and altered relationships, for aphasic people the aim of rehabilitation should be to improve either the disability (making language and communication more efficient) or the possibilities of coping behaviors, interven- ing in the social sphere, and reinforcing self-esteem and the desire to return to personal autonomy.

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Quality of life measurement in bone metastases: A literature review

Quality of life measurement in bone metastases: A literature review

Abstract: Quality of life (QOL) has become an important consideration in the care of patients with bone metastases as prevalence, incidence and patient survival are on the rise. As a result, more interventional studies now measure patient’s QOL as a meaningful endpoint. However, well-developed bone metastases specifi c quality of life instruments are lacking. A literature review was conducted to better understand the nature of QOL instruments used in bone metastases trials. A total of 47 articles evaluating QOL in patients with bone metastases were identifi ed. Twenty- fi ve different instruments were used to evaluate QOL with study-designed questionnaires and the EORTC QLQ-C30 being most commonly employed. Many studies used more than one scale or instrument to measure QOL. This makes it diffi cult to compare QOL in bone metastases patients across studies and come to any formal conclusions. Therefore, this review demonstrates the need to develop a bone module that can be used across countries in future clinical trials.

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Measurement properties of quality of life measurement instruments for infants, children and adolescents with eczema: protocol for a systematic review

Measurement properties of quality of life measurement instruments for infants, children and adolescents with eczema: protocol for a systematic review

Evidence tables will include the following: reference, geographical location, language, setting, study type, key characteristics of study subjects, name of measurement instruments, domains measured, number of items and (sub)scales, number and type of response categories, re- call period in the questions, scoring algorithm, time needed for administration, mode of administration, tar- get population for whom the questionnaire was origin- ally developed, how a full copy of the questionnaire can be obtained, the instructions given to those who complete the questionnaire, the available versions and translations of the questionnaire, results of the measure- ment properties, all items from the COnsensus-based Standards for the selection of health Measurement IN- struments (COSMIN) box Generalisability, and all items from the COSMIN box Interpretability [17, 18].

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Comparison Between CB-SEM and PLS-SEM: Testing and Confirming the Maqasid Syariah Quality of Life Measurement Model

Comparison Between CB-SEM and PLS-SEM: Testing and Confirming the Maqasid Syariah Quality of Life Measurement Model

Structural Equation Modelling (SEM) is a powerful multivariate statistical analysis technique which combines both factor analysis and multiple regression analysis. It is capable of analysing the inter-relationships among latent constructs simultaneously in a model. These latent constructs are measured using certain number of items in a questionnaire. Covariance-based SEM (CB-SEM) or full SEM have become the choice for many researchers in a variety of disciplines because of their ability to evaluate complex relationships using parametric statistical approach. Researchers could also opt for Variance-based SEM (VB-SEM) or Partial Least Square-SEM (PLS-SEM) when their data failed the parametric assumptions such as multivariate normality distribution and minimum sample size. However, the approach of VB-SEM or PLS-SEM is a non-parametric instead of a parametric approach in CB-SEM. This article compared the performance of both SEM approaches using the same dataset to validate the Measurement Model for Maqasid Syariah Quality of Life (MSQoL). The findings of both analyses suggested that CB-SEM or full SEM is more appropriate to validate and confirm the MSQoL measurement model.

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Development and evaluation of a quality of life measurement scale in English and Chinese for family caregivers of patients with advanced cancers

Development and evaluation of a quality of life measurement scale in English and Chinese for family caregivers of patients with advanced cancers

Many QOL scales are originally developed in Europe and North America. There are differences in socio-cul- tural context between the East and the West that can affect QOL measurement. Our qualitative study of Chin- ese family caregivers of advanced cancer patients in Singapore has shown substantial differences between the concerns of the caregivers and the contents of five exist- ing QOL measurement scales developed in the West [7]. The five existing scales collectively, but not individually, provide adequate coverage of the physical and social do- mains of quality of life and most themes on negative emotions. However, they do not cover themes on posi- tive emotions (such as feeling appreciated), existential concerns (such as making sense of caregiver’s role), daily life strains (such as hectic life) and financial constraints (such as restrictions on spending) [7]. Although the Caregiver Quality of Life Index-Cancer has been trans- lated into simplified Chinese (which is the written form of Chinese used in China and Singapore), empirical find- ings from China provided “ only partial support for the relevance and construct validity of the scale for Chinese caregivers” [8]. Worldwide, English and Chinese are two of the most widely used languages [9]. Singapore is a multi-ethnic society, with Chinese (74%), Malay (13%) and Indian (9%) being the major ethnic groups. Among ethnic Chinese, Malay and Indian residents aged 15 or above, 73%, 80% and 84% are literate in English (either monolingual or multilingual), respectively [10]. The number of residents aged 15 or above who are literate only in Chinese, Malay or Tamil (the main Indian language used in Singapore) are approximately 486

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Measurement and meaning in health related quality of life research

Measurement and meaning in health related quality of life research

Current methods for deriving weightings not only restrict discussions regarding what is important in a good quality life, but they are also an obstacle to realizing the self- determination which partially motivates the use of these measures. For instance, consider again the case in which the general population consisting o f mostly healthy individuals is enlisted to determine the relative weightings o f various health states. Imagine, as in the example above, that ‘I find it hard to dress m y self is ranked as a health state expressing low quality of life and weighted accordingly. This ranking becomes a problem if those whose quality o f life the measure is meant to assess do not experience difficulty dressing as undignified or adversely affecting their quality of life. Individuals who answer yes to the question will have their quality o f life score dim inished despite their individual or even collective experience. If quality of life measurement is meant to give respondents a voice in their health care and as Edgar suggests weighting is one of the mechanisms that allows this to happen, then this discrepancy is a serious problem.

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An integrative approach to quality of life measurement, research, and policy

An integrative approach to quality of life measurement, research, and policy

Recent research on QOL has focused on two basic methodologies of measurement. One method focuses upon self-reported levels of happiness, pleasure, fulfillment, and the like-termed “subjective well-being” (SWB – see Diener and Lucas (1999) and Easterlin (2003)). The other utilizes so-called “objective” measurements of QOL-quantifiable in- dices generally of social, economic, and health indicators (United Nations Development Programm, 1998) – that re- flect the extent to which human needs are or can be met. For example, objective measures include indices of economic production, literacy rates, life expectancy, and other data that can be gathered without directly surveying the individuals being assessed. Objective indicators may be used singly or in combination to form summary indexes, such as the UN’s Hu- man Development Index (Sen, 1999; United Nations Devel- opment Programm, 1998). While these measurements may provide a snapshot of how well some physical and social needs are met, they are narrow, opportunity-biased, and can- not incorporate many issues that contribute to QOL such as identity, participation, and psychological security. It is also clear that these so-called “objective” measures are actually proxies for experience identified through “subjective” asso- ciations of decision-makers; hence the distinction between objective and subjective indicators is somewhat illusory.

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Measurement properties of adult quality-of-life measurement instruments for eczema: protocol for a systematic review

Measurement properties of adult quality-of-life measurement instruments for eczema: protocol for a systematic review

contributing reviewers. This will increase the credibility of any findings. However, coordinating work packages between many reviewers is certainly a challenge. Whether or not we will be able to reach the goal of recommending one best instrument is unclear. It may well be that no in- strument will meet all the filter criteria or that several in- struments will meet them. In any case, the findings of this systematic review will inform a consensus-finding process at the fourth meeting of the HOME initiative (HOME IV) that will take place in Malmö, Sweden, in April 2015. Based on the findings of this work, we hope to be able to inform group discussion and consensus voting with the ultimate goal to endorse one instrument to be in- cluded in the core set of outcome measurement instru- ments for eczema. If instruments lack important requirements, for instance, in relation to responsive- ness or feasibility, further validation work will need to be done before a QoL instrument can be included in the core set.

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Response shift masks the treatment impact on patient reported outcomes (PROs): the example of individual quality of life in edentulous patients

Response shift masks the treatment impact on patient reported outcomes (PROs): the example of individual quality of life in edentulous patients

Some studies have found that memory can influence the findings from the then-test [17]. A limitation with our study is that we did not control for recall bias and we did not compare the changes with any criterion measure of change [18,19]. However, receiving dentures is a signifi- cant and salient event and it seems likely that the influ- ence of recall bias is minimal especially given the number of judgements a patient had to make and the 3 month gap between assessments. One alternative explanations for our findings of a discrepancy between prospective and ret- rospective assessments is that subjects may have expected that receiving high quality dentures should improve their health, an they retrospectively rated their initial health as lower to reflect this expectation, a cognitive mechanism known as the implicit theory of change [20]. Our interpre- tation of the results is based on the assumption that the retrospective then-test data provides a more valid indica- tion of baseline IQoL for comparison with 3 month data than does the baseline assessment itself. If, however we assume that the retrospective judgement is biased and that the concurrent baseline assessment is more valid, our results would be interpreted differently and there would be no treatment effect. To support the response shift the- ory, we would need to show that the new information available to patients after receiving their dentures led to more valid judgments of their baseline scores. However, it is as yet unclear how one would determine which theory is more valid for a particular situation. It would be impor- tant to distinguish patients who's situation had improved or deteriorated from those who had changed their mind

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Understanding quality of life through Sen's capability framework : an application to people living with HIV/AIDS

Understanding quality of life through Sen's capability framework : an application to people living with HIV/AIDS

comprehensive as possible. Therefore, according to this interpretation of Sen’s works, the concept of quality of life is not to be found in the comparison between the columns of Table II-2, in other words by analysing that table horizontally, but in the well-being column. From this point of view, the concept of quality of life can be seen as the most complex and articulated form of evaluation of well-being conceived in the capability framework. If I can use the metaphor of a scale, then the concept of standard of living is the most restricted form of evaluation of individuals’ well-being; it consists of an objective assessment of people’s financial circumstances, e.g. their income and assets, and represents the lowest end of the scale. The concept of ‘well-being’ represents a more comprehensive form of assessment of individuals’ well-being, since it is concerned with assessing people’s perceptions, both emotionally and cognitively, of their own circumstances, from their work environment, social life etc. to their life as a whole; it represents the middle point of the scale. The concept of quality of life represents the most comprehensive form of assessment of individuals’ well-being; it consists of both subjective and objective assessments of people’s own circumstances. Subjective assessments of quality of life are identical to well-being evaluations, so the two expressions can be and are usually used interchangeably. Objective assessments of quality of life differ from standard of living because they do not only focus on people’s income, but include their housing and wider environment, e.g. the level of

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A battery of instruments to assess Quality of Life (BASIQ): validation of the italian adaptation of the Quality of Life Instrument Package (QoL-IP)

A battery of instruments to assess Quality of Life (BASIQ): validation of the italian adaptation of the Quality of Life Instrument Package (QoL-IP)

Scopo del presente lavoro è la valutazione delle caratteristiche metriche del BASIQ (BAtteria di Strumenti per l’Indagine della Qualità di Vita), traduzione e adattamento italiani del Quali- ty of Life Instrument Package (QoL-IP) del Centro per la Salu- te Pubblica dell’Università di Toronto. Questa batteria si basa su un modello interpretativo della QdV-G che integra aspetti qualitativi e quantitativi, soggettivi ed oggettivi, lasciando una posizione centrale alla relazione individuale tra attribuzione di importanza e percezione di soddisfazione. Il BASIQ è costituito da tre questionari: un’intervista diretta alla persona, un questio- nario rivolto al proxy (caregiver, operatore socio-assistenziale di prima linea, ecc.) ed un questionario per il valutatore esterno (medico di medicina generale, medico specialista, amministra- tore di sostegno, ecc.).

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Quality of life in men living with advanced and localised prostate cancer in the UK: a population-based study

Quality of life in men living with advanced and localised prostate cancer in the UK: a population-based study

Men were sent a postal survey (Appendix p2-22) on behalf of their treating Trust/Board. Men consented by returning completed surveys and declined by not returning them, returning them unanswered or opting out via a free-phone helpline. Up to two reminders were sent to non- responders. The data collection period differed by nation: England 16/10/2015-21/04/2016; NI 14/06/2016-18/10/2016; Scotland 20/07/2016-01/11/2016; Wales 28/07/2016-09/11/2016). The survey included a range of validated measures, including those defined in the International Consortium on Health Outcome Measurement (ICHOM) minimum outcome dataset 14 : the Expanded Prostate cancer Index Composite short form (EPIC-26) 17 ; items on

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Quality of life in men living with advanced and localised prostate cancer in the UK: a population-based study

Quality of life in men living with advanced and localised prostate cancer in the UK: a population-based study

Men were sent a postal survey (Appendix p2-22) on behalf of their treating Trust/Board. Men consented by returning completed surveys and declined by not returning them, returning them unanswered or opting out via a free-phone helpline. Up to two reminders were sent to non- responders. The data collection period differed by nation: England 16/10/2015-21/04/2016; NI 14/06/2016-18/10/2016; Scotland 20/07/2016-01/11/2016; Wales 28/07/2016-09/11/2016). The survey included a range of validated measures, including those defined in the International Consortium on Health Outcome Measurement (ICHOM) minimum outcome dataset 14 : the Expanded Prostate cancer Index Composite short form (EPIC-26) 17 ; items on

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Living with diabetes: quality of care and quality of life

Living with diabetes: quality of care and quality of life

In conclusion, the results of this study indicate the main problems perceived by patients with DM that affect their quality of life. These problems concern the difficulty of fol- lowing a strict treatment regimen for the rest of their lives, fear of hypoglycemia, a disease-centered health care model lacking dialog and participation in decision-making, and bureaucratic and administrative circuits that hamper the inte- gration of the disease into patients’ social and occupational lives. These findings are not exclusive to the study setting or to DM, but reflect the biopositivist perspective that char- acterizes modern medicine. 42–44 Despite the efforts of some

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Measurement Properties of the Arabic Lebanon Version of the Pediatric Quality of Life Inventory 4 0 Generic Core Scales for Young Child (5   7 years), and Child Aged 8   12 Years: Quality of Life of in Urban and Rural Children in Lebanon

Measurement Properties of the Arabic Lebanon Version of the Pediatric Quality of Life Inventory 4 0 Generic Core Scales for Young Child (5 7 years), and Child Aged 8 12 Years: Quality of Life of in Urban and Rural Children in Lebanon

The strength of the present study is that it is representative of the general population, thus able to make inferences based on the available observations (Villalonga-Olives et al., 2010). There are some limitations in the present study. It is limited to South Lebanon, because of a lack of resources. To continue the validation, it is necessary to include an assessment of its re- sponsiveness to change of the group over time. Self-reporting of diseases as a measurement of health status also presents some limitations (Sabbah et al., 2003). Some HRQOL scales were skewed, which is to be expected in a general population. However, the parametric techniques that were applied are quite robust, and have been demonstrated to be adequate in analyzing skewed data if sample size is large enough (Verrips et al., 1999). The PedsQL Total Score reliability coefficients were calculated only for those cases where all items have been completed (Ware, 1997). An algorithm must be recommended to substitute a personspecific estimate for any missing item when the re- spondent answered at least 50 percent of the items in a scale, then it is possible to derive scale scores for nearly all respon- dents across the PedsQL4.0 scales (Ware, 1997). Finally, the absence of a generic valid reference instrument in Arabic in Lebanon remains a major obstacle for the establishment of concurrent validity as well as predictive validity.

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The F unctional A ssessment of C hronic I llness T herapy (FACIT) Measurement System: properties, applications, and interpretation

The F unctional A ssessment of C hronic I llness T herapy (FACIT) Measurement System: properties, applications, and interpretation

responses. One of the aims of a large multicenter study of cancer and HIV patients (N = 1615) was to test the psy- chometric properties and statistical equivalence of the English and Spanish language versions of the FACT sub- scales across literacy level (low vs. high) and mode of administration (self report vs. interview). Technical equiv- alence across mode of administration was demonstrated in the high literacy patients; there were few differences in data quality or psychometric measurement properties of the FACT-G. Technical equivalence between modes of administration with the FACT permits unbiased assess- ment of the impact of chronic illnesses and their treat- ments on patients from diverse backgrounds [23]. We have additional data to support the appropriateness of computer-administered versions of the questionnaire, including a multimedia touchscreen program [24]. We are currently developing other novel administration methods such as computer-assisted telephony and web-based administration. Across these modes of administration, our preliminary data suggest that while there are small dif- ferences in the way people respond based on mode of administration, these alternate formats are essentially equivalent.

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Development of a minimum protocol for assessment in the paediatric voice clinic : Part 2: subjective measurement of symptoms of voice disorder

Development of a minimum protocol for assessment in the paediatric voice clinic : Part 2: subjective measurement of symptoms of voice disorder

validated tool for measurement of quality of life that can be used in children from 8 years, though the content of the scales are less relevant for the specific issues relating to the impact of voice disorder. Furthermore there are very few child measures available with good enough psychometric properties to allow them to be used in ENT and SLT diagnostic clinics. Insights from adult measurement of voice must be therefore be sought.

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Quality of work life

Quality of work life

beings. Quality of Work Life is the degree to which individuals are able to satisfy their important personal needs while employed by the firm. Companies interested in enhancing employees Quality of Work Life generally try to instill in employees the feelings of security, equity, pride, internal democracy, ownership, autonomy, responsibility and flexibility. They try to treat employees in a fair and supportive manner, open communication channels at all levels, offer employees opportunities to participate in decisions affecting them and empower them to carry on with their assignments. Quality of Work Life has also been associated with organizational changes aimed at increasing the levels of job widening (greater horizontal task flexibility) and job enrichment (greater vertical task flexibility including the taking on of new responsibilities including those formerly undertaken by supervisory or managerial personnel). Crucially, the idea is that of attaining higher levels of involvement and thereby motivation by improving the attractiveness of the work itself rather than through improving the terms and conditions of work (Hertzberg). Quality of life phenomena explored in early studies included job satisfaction (measured by employee turnover, absenteeism or attitude surveys), organizational climate and the learning of new tasks. Quality of Work Life refers to fair remuneration, safe and healthy environment, opportunities for growth. Better Quality of Work Life leads to motivation and satisfaction. Motivated and satisfied employees make better contribution to production, quality and productivity. Organizations in the past, gave more importance on the advanced technology for higher productivity surpassing the needs and mental state of its employees. This created a negative impact on the working environment among the employees. Thus, this was realized that the societal support hand with the technical innovations. This integration can also be made through quality of work life programs. Quality of Work Life denotes all the organizational inputs which aim at the employee satisfaction and enhancing organizational effectiveness. In the late 1950’s the term Quality of Work Life was used to stress prevailing poor quality of life at work place and it is first defined then in terms of people reaction to work, particularly an individual’s job satisfaction and meant unfavorable needs of job environment for people.

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Quality of Life: Factors Determining its Measurement Complexity

Quality of Life: Factors Determining its Measurement Complexity

environment factors of quality of life, a macroeconomic situation of a country (economic activity, macroeconomic stability) and the role of the state in economic life of the country are assessed. On the other hand, on the level of individual’s quality of life, material well-being includes such factors as a financial situation (income and accumulated wealth), living/housing conditions, and employment (Easterlin, 1995, 2001; Felce & Perry, 1995; Schalock, 2004; Susniene, Jurkauskas, 2009). It is interesting that according to the results of studies conducted by psychologists (Kahneman et al., 1999) and economists (Easterlin, 1974; Scitovsky, 1976; Layard, 2005), relationship between average happiness and average income is not direct – after a certain level of income is reached, no further gains in quality of life are observed. Thus, the importance of material well-being, as an internal factor affecting quality of life, decreases. To explain this, British economist R. Layard (2005, 2007) uses the principles of habit and rivalry. First, people quickly get used to higher income, thus it does not provide such a great satisfaction, as one might expect. Also, peoples’ perception about minimum income, which would be sufficient for subsistence, is constantly changing. Second, people tend to compare themselves with their social environment – family, neighbors, friends, colleagues. Income and accumulated wealth is no exception. According to happiness researcher, economist J. S. Duesenberry (1949), it is not only the absolute income, which is important to the person, but also the relative one in comparison to other members of the society. When everybody’s income is growing, there will be some, which will still feel unhappy, if their income is growing less quickly than that of the relative leader of the group.

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Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer

Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer

Considering the six problematic items from the multi- trait-scaling analyses, one may speculate on possible explanations for these findings in relation to the popula- tion of children undergoing cancer treatment. It appears that the dimensionality regarding Physical Limitation and the social dimensions (Social Inclusion, Social Exclusion) are difficult to separate from one another. It is reasonable that physical health and social life are related to one another in persons undergoing heavy treatment. Three of these items (item 10, 26, 31) con- cern the child’s perception of explaining the disease to others. The result may represent a mixture of effects of cancer treatment on all dimensions. Reasons for not communicating with peers may be a result of physical weakness giving social restrictions and be related to both physical and social aspects. The results regarding sleep difficulty (item 11) and problems concentrating

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