Definition Of Quality Of Life Research Articles

Families' Perspectives of Quality of Life in Pediatric Palliative Care Patients.

Medical and academic institutions began prioritizing Pediatric Palliative Care (PPC) less than two decades ago. Although policies and institutions claim to improve the Quality of Life (QoL) of PPC patients and their families, family-defined QoL remains ambiguous. This research investigates the definitions of QoL for PPC patients according to their primary caregivers. We conducted qualitative, semi-structured focus groups of the primary caregivers of PPC patients. The transcripts were analysed for themes using inductive thematic analysis. Participants included primary caregivers of children currently receiving PPC from a healthcare institution in California. We identified several factors that primary caregivers considered components of QoL for their children. The ability to communicate and adapt or be accepted underpinned the concept of QoL for families. QoL for PPC patients was defined by primary caregivers as being able to communicate in a respectful, controlled, physically- and socially-comfortable environment. Attempts to improve QoL should focus not only on pain and symptom control, but also on enhancing opportunities for children to communicate and maintain a sense of dignity.

Engaging patients to recover life projectuality: an Italian cross-disease framework.

Chronic disease is recognized as having a large impact on patient quality of life (QoL), which can be defined as an individual's satisfaction or happiness with life in domains he or she considers important. Policy makers and clinicians recognize increasingly that patients can safeguard their QoL by making healthy lifestyle choices and being actively engaged in their health care. However, in the emphasis on promoting patient engagement to enhance patients' QoL, there is no consensus regarding the relationship between QOL and patient engagement, resulting in a lack of shared guidelines among clinicians on interventions. Furthermore, no studies have provided an in-depth exploration of the perspective of patients with chronic conditions who are engaged in their health care and their requirements to achieve an improved QoL. Given this theoretical gap, the present study attempted to explore the patient engagement experience and its relationship with patient QoL in the context of the Italian healthcare system and in relation to different chronic diseases. In-depth qualitative interviews on a sample of 99 patients with a wide variety of chronic conditions (heart failure, chronic obstructive pulmonary disease, stroke, diabetes, and cancer). Patient engagement in health care can be defined as a context-based and cross-disease process that appears to enable patients to recover their life projectuality, which had been impaired by the onset of chronic disease. Successful patient engagement may also be related to a positive shift in the ways in which patients perceive self and life and experience empowerment to realize their life potential, thus improving quality of life. Patient engagement is a powerful concept capable of reflecting significant psychosocial changes that promote patient QoL along the care process. There appears to be theoretical and empirical justification for a broad definition of QoL. QoL deeply depends on the patient ability to engage in their care and on the health expectations they have. We propose a model of the relation between patient engagement and patients' trajectories in critical event responses and use it to illustrate a new perspective on QoL. This research showed the heuristic value patient engagement as a is a key concept in the promotion of a patients' experience-sensitive QoL interventions and assessment measures.

Quality of life in adolescents with cerebral palsy

Child development is dynamic and multidimensional, with genetic and epigenetic building blocks upon which the complex effects of environment are overlaid (ie, nurture through nature).1 In children with cerebral palsy and other disabilities, developmental outcome is more than the result of medical treatment, and includes the child's communication, coping, and problem-solving skills; educational opportunities; family adaptation; and service delivery2—factors all shown by quality of life (QoL). WHO's definition of QoL as “the individual's perception of their position in life in the context of the culture and value system in which they live, and in relation to their goals, expectations, standards, and concerns”3 represents the validation of the unique value of every person, typically developing or with a disability.

Patient‐reported outcome measures in pediatric epilepsy: A content analysis using World Health Organization definitions

Patient-reported outcome (PRO) measures that assess the effect of epilepsy on children's lives include the concepts of health, health-related quality of life (HRQOL), and quality of life (QOL). They also contain varied health and health-related content. Our objectives were to identify what generic and epilepsy-specific PRO instruments are used in childhood epilepsy research and to make explicit their conceptual approach and biopsychosocial content. MEDLINE, EMBASE, and PsycINFO were searched from 2001 to 2011 for PRO measures used in pediatric epilepsy. Measures were analyzed on an item-by-item basis according to World Health Organization (WHO) definitions of QOL and the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) biopsychosocial health framework to distinguish the conceptual approach within each measure. The health content analysis coded each item according to specific ICF-CY components of body function, activity and participation, environment, or personal factors to determine the health content for each measure. Three generic and 13 epilepsy-specific PRO measures were identified; 10 of 16 measures utilized a biopsychosocial health approach rather than an HRQOL or QOL approach. Content analysis showed that in 11 of 16 measures, >25% of the items represented participation and activity components of the ICF-CY, whereas a high proportion of environment items were found in only one epilepsy-specific measure. This comprehensive review provides information aiding clinicians and researchers in the selection of the appropriate PRO instruments for children with epilepsy on the basis of content. Most epilepsy-specific and generic PROs use a biopsychosocial health approach as opposed to a subjective HRQOL/QOL approach to measurement. Clinicians and researchers must be aware of these concepts and content when intending to measure outcomes validly.

Quality of urban life & environmental sustainability studies: Future linkage opportunities

Throughout much of the world, cities are growing at an unprecedented rate presenting major challenges for national and local governmental officials. Not only must they cope with growing populations and an expanding infrastructure to accommodate growth, governments have to satisfy the changing needs of their existing populations. The challenge is particularly formidable for policy makers and planners. Research that addresses the quality of life (QOL) of urban residents can be helpful in meeting this challenge. In particular, research that measures and monitors the quality of urban life (QOUL) can inform policy makers and planners. Such research can also examine the culture of sustainability among urban residents, an increasingly important concept in the planning and management of cities. This paper offers operational definitions of QOL and QOUL. It then briefly reviews QOUL studies conducted in selected world cities during the past decade. Next, several types of measures are described as well as the conceptual models used to test relationships between the measures. Finally, measures covering the culture of sustainability among urban residents are suggested as part of QOUL studies. Such studies can be instrumental in the development of City Prosperity Indexes.

Review of cross-cultural issues related to quality of life after spinal cord injury.

Quality of life (QOL) is a dynamic concept that means different things to different people, both in the general public and within the research community. Because of this, a common definition of QOL has been hard to achieve. This article reviews cross-cultural issues related to QOL research in spinal cord injury (SCI). Many factors influence QOL for persons with SCI, including observable and objective indicators and subjective self-report ones. The World Health Organization's International Classification of Function, Disability and Health is used in this article as a framework to better understand how these factors may influence QOL. A number of important steps are summarized with respect to measurement issues in QOL. A comparison between data from 2 countries (United States and Brazil) using the International SCI QOL Basic Data Set shows similarities in scores and good reliability in the Brazilian sample. Substantial, significant correlations were observed among the SCI QOL Basic Data Set items and the WHOQOL-BREF within the US sample. The article ends with a set of recommendations for the development of cross-cultural measures of QOL for use in the SCI population.

Assessing the quality of life of children with sickle cell anaemia using self-, parent-proxy, and health care professional-proxy reports.

The quality of life (QoL) of children with sickle cell anaemia (SCA) in the United Kingdom has not been examined, and a discrepancy measure based on Gap theory has rarely been used. This study investigated whether (1) child self-reports of QoL using a discrepancy measure (the Generic Children's QoL Measure; GCQ) are lower than those from healthy children, (2) proxy reports from parents and health care professionals are lower than child self-reports, and (3) demographic and disease severity indicators are related to QoL. An interdependent groups, cross-sectional design was implemented. Seventy-four children with SCA, their parent, and members of their health care team completed the GCQ. Demographic and disease severity indicators were recorded. GCQ data from healthy children were obtained from the UK Data Archive. Contrary to past research, when examining generic discrepancy QoL, children with SCA did not report a lower QoL than healthy children, and parent- and health care professional-proxy reports were not lower than child self-reports. Few of the demographic and disease severity indicators were related to QoL. Proxy reports may be used to gain a more complete picture of QoL, but should not be a substitute for self-reports. The explanation for the relatively high levels of QoL reported is not clear, but children with SCA may have realistic expectations about their ideal-self, place greater emphasis on aspects other than health in shaping their QoL, and define achievements within the limits of their illness. Future research should focus on psychological factors in explaining QoL. Statement of contribution What is already known on this subject? Children with sickle cell disease (SCD) generally have a reduced QoL compared with healthy children, but there appears to be no research measuring QoL in paediatric SCD in the United Kingdom. Proxy QoL reports from parents are often lower than child self-reports, but there is less research examining proxy reports from health care professionals. Previous research has measured paediatric QoL using measures of current health-related QoL, but this is not in line with the WHO's definition of QoL as the discrepancy between current state and expectations. What does this study add? Children with Sickle cell anaemia do not have an impaired discrepancy QoL; they may have realistic expectations about their ideal-self and define achievements within the limits of their illness. Health care professionals are able to gauge a SCA child's discrepancy QoL better than parents. The GCQ (a generic discrepancy measure of QoL) takes into account expectations about ideal QoL and does not emphasize health; it may be of use to Psychologists working with SCA children.

Prostate Cancer and Quality of Life: Analysis of Response Shift Using Triangulation Between Methods

Quality of life (QoL) after prostate cancer treatment is uncertain. Patient responses to QoL questions shift for a number of reasons: measurement intervals no longer have the same psychological anchors (recalibration), the importance attributed to different QoL domains changes over time (reprioritization), and the definition of QoL differs throughout the disease continuum (reconceptualization). Therefore, the aim of this study was to describe QoL response shift in a cohort of 66 men with prostate cancer. The method involved carrying out a sequential triangulation between quantitative and qualitative methods. Patients were assessed at baseline (P1), followed by a posttest (P2) and a then-test measurement (P3). The difference between P3 and P1 was used to determine the response shift effect (recalibration). From baseline to posttest, QoL significantly decreased. The recalibration then-test confirmed a low QoL in all periods evaluated. Coping mechanisms were found to differ by age group, with older men less concerned about side effects than younger men. Health professionals should be alert to QoL changes over time and possible side effects, should coping skills fail.

Quality of life in end stage renal disease patients.

To understand factors associated with quality of life (QOL), examine types of QOL instruments, and determine need for further improvements in QOL assessment. The method used databases (Pubmed, Google scholar) and a bibliographic search using key words QOL, end stage renal disease, Hemodialysis, Peritoneal dialysis, instruments to measure QOL, patients and qualitative/quantitative analysis published during 1990 to June 2014. Each article was assessed for sample size, demographics of participants, study design and type of QOL instruments used. We used WHO definition of QOL. For this review, 109 articles were screened, out of which 65 articles were selected. Out of 65 articles, there were 19 reports/reviews and 12 questionnaire manuals. Of the 34 studies, 82% were quantitative while only 18% were qualitative. QOL instruments measured several phenomenon such as physical/psychological health, effects and burdens of kidney disease, social support etc. those are associated with QOL. Few studies looked at spiritual beliefs, cultural beliefs, personal concerns, as per the WHO definition. Telemedicine and Palliative care have now been successfully used however QOL instruments seldom addressed those in the articles reviewed. Also noticed was that longitudinal studies were rarely conducted. Existing QOL instruments only partially measure QOL. This may limit validity of predictive power of QOL. Culture and disease specific QOL instruments that assess patients' objective and subjective experiences covering most aspects of QOL are urgently needed.

Quality Of Life Analysis: Socio-Economic Perspective With Reference To Jharia Coalfield

The paper makes an attempt to study the various aspects of Quality of Life (QOL) from socioeconomic perspective. While doing so, certain definitions of QOL and its ingredients have been studied.The significance of socio-economic parameters in the study of QOL has been highlighted. Socio-economic factors are not universal and may vary from place to place and time to time. As a case study, Jharia Coalfield region is studied and a methodology is prepared to evaluate the quality of life index of the region.While studying the Jharia Coalfield region, the history of coal mining there and the issues of QOL in mining areas have been studied.Issues of QOL in coal mining areas include the material dimensions, non-material diemnsions and the environmental dimensions.The utilization of the land there and the settlement pattern are shown. Based on technical information about the stability of the land, study areas are selected. In the selected study areas, socioeconomic survey is conducted and QOL index is formulated.

A conceptual definition of quality of life with a left ventricular assist device: Results from a qualitative study

ObjectiveTo develop a conceptual definition of quality of life (QoL) with a left ventricular assist device (LVAD). BackgroundConceptual and operational definitions of QoL with an LVAD are lacking. MethodsA grounded theory method was used. Adult, outpatient LVAD recipients (n = 11) participated twice in individual or paired interviews. ResultsA conceptual definition of QoL while living with an LVAD was established as: “Being well enough to do and enjoy day-to-day activities that are important to me.” Participants described 5 important life domains consistent with QoL literature: physical, emotional, social, cognitive, and spiritual/meaning. However, participants identified unique concerns not addressed by generic or heart failure disease specific measures typically used in the LVAD population. ConclusionExisting generic and heart-failure specific QoL measures are not adequate for understanding QoL among LVAD patients. Cognition and spiritual/meaning domains were significant; these need inclusion for comprehensive QoL assessment in the LVAD population.

Impact of hormone therapy on quality of life after menopause

Given the complexity of the literature on quality of life (QOL) and hormone therapy (HT) among women in the menopausal transition and postmenopause, the purposes of this integrative review were to (1) define QOL as a multidimensional construct; (2) review validated instruments for measurement of QOL; (3) review results of HT and QOL clinical trials that have used validated instruments; and (4) assess the effectiveness of HT on QOL, including health-related QOL (HRQOL), menopause-specific QOL (MSQOL), and global QOL (GQOL). The literature on HT and QOL was searched for definitions of QOL and validated instruments for measuring QOL, and the results were summarized. The purposes of this integrative review were to evaluate the effects of HT on HRQOL, differentiating the effects of HT on GQOL, HRQOL, and MSQOL. As a basis for this review, we searched for published controlled clinical trials in which the effects of HT on QOL were studied using validated QOL instruments, in particular menopause-specific validated instruments. Clear definitions are elucidated. Validated instruments for the measurements of HRQOL, GQOL, and MSQOL are summarized, and the necessity of their incorporation into future research and clinical practice is emphasized. The published effects on QOL of estrogens and progestogens administered to symptomatic and nonsymptomatic women in the menopausal transition and beyond are reviewed. The impact of various health state-related symptoms on HRQOL and GQOL is now an integral component of contemporary health care. Effects of HT include GQOL and HRQOL and should be menopause-specific. There is clearly a need for further studies on menopause and menopause-related therapies using appropriate and validated instruments. Literature review shows that HT provides a significant benefit for MSQOL in midlife women, mainly through relief of symptoms, but treatment also may result in a global increase in sense of well-being (GQOL). HRQOL benefits are contingent on symptom status, as are MSQOL outcomes. Women who are severely symptomatic experience a significant improvement in HRQOL and MSQOL, although this improvement is not significant among women without severe symptoms at baseline measures in clinical trials.

The effects of spending time outdoors in daylight on the psychosocial wellbeing of older people and family carers: a comprehensive systematic review protocol

Review question/objective The overall objective of this research is to undertake a systematic review of the effects of spending time outdoors in daylight on the psychosocial wellbeing of older adults and family carers. The specific objectives to be addressed are: Which aspects of psychosocial wellbeing are affected by spending time outdoors in daylight in older adults and family carers? To what extent is spending time outdoors in the daylight effective for improving aspects of psychosocial wellbeing in older adults and family carers? Inclusion criteria Types of participants This review will consider studies that include all older adults aged 55 years or more, including those living in a community setting or a residential aged care facility. In addition, this review will consider family carers, who are defined as unpaid relatives or friends of an older person, who help that individual with their activities of daily living. No further inclusion criteria will be applied. Types of intervention(s)/phenomena of interest The intervention or phenomenon of interest is spending time outdoors in daylight. ‘Outdoors in daylight’ is a broad term that encompasses all outdoor environments where participants are exposed, directly or indirectly, to daylight in a natural setting while participating in any type of outdoor activity. For our review, the definition of outdoor activity is simply ‘being outdoors’ in order to capture all types of engagement with outdoor environments. Studies will be excluded if they utilise artificial ‘bright’ light sources or modify the indoor environment to improve light exposure. An absence of activity or indoors activity with no exposure to daylight will be used as a comparator. Types of outcomes This review will consider studies that include objective and/ or subjective measures of the following outcomes: Older adults: • psychosocial well-being: o behavioural disturbances; o cognition; o mood levels; o quality of life; o satisfaction with service provision; and o social interaction. Family carer health: o carer satisfaction; and o carer stress.

Quality of Life (QoL) in patients with Traumatic Brain Injury (TBI): A Literature Review

Purpose: To describe the definition of quality of life (QoL) and identify the most appropriate tool for QoL assessment used in patients with TBI.Method: Searching was conducted from PubMed, CINAHL, EBSCO, and ProQuest during 2000-2011. A total of 33 studies were analyzed for this review consisting of 9 review studies, 2 intervention studies, and 22 descriptive studies.Result: Two important definitions of QoL were used in studies related to TBI namely achievement and subjective well-being. Although varieties of generic measurements have been used to measure QoL in TBI patients, there was a lack of TBI-specific Health-related Quality of Life (HRQoL) instrument. Despite the different approach and time measured either short or long outcomes, appropriate domains of QoL tool seem essential particularly among those with moderate and severe TBI.Conclusion: QoL is a wide concept which can be defined in several dimensions. The QOLIBRI as a new disease-specific QoL measurement in TBI seems a feasible and valid approach for the assessment of QoL in TBI. However, the application across cultural remains a challenge and needs a validation.

Perceptions of Health Status in Multiple Sclerosis Patients and Their Doctors

To compare neurologist and patient perceptions of multiple sclerosis (MS)-related health status. MS patients (n=99) were recruited from six sites in Canada. Following a consultation with their neurologist, patients estimated their relapse frequency, rated their general health and quality of life (QoL), reviewed descriptions of eight health domains and selected the three most important, and completed a utility assessment using the standard gamble (SG). Concurrently, neurologists independently used the same instruments to rate their patients' health status. Assessments were compared on the basis of paired mean values of both groups and the degree of exact agreement quantified by intraclass coefficient (ICC) and kappa analyses, which yield values of 1.0 with 100% agreement. There were significant differences (p<0.001) between patient and neurologist ratings for relapses in the last year (0.86 vs. 0.4, respectively), QoL (61.2 vs. 69.7 (maximum score = 100) and utility (0.864 vs. 0.971); ICC analysis revealed moderate to poor levels of agreement (0.56 for QoL to 0.03 for SG). There was little concordance in identification of important health domain and the only significant associations were in bodily pain and social functioning (kappa statistic = 0.24, p = 0.026 for both). Neurologists identified physical functioning domains as important, while patients placed more emphasis on mental health domains. Discrepancies between neurologist and patient perceptions of MS were observed. The study identifies a need to educate neurologists on the recognition of MS health domains that are important in the definition of patient QoL.

Quality of Life: Definition and Measurement

RETRACTION NOTICE This article has been retracted due to violating Good Publication Practice and not complying to EJOPS's/PsychOpen's Ethical Guidelines on plagiarism and redundant or concurrent Publication. Quality of life (QoL) can be defined in many ways, making its measurement and incorporation into scientific study difficult. This is a theoretical paper regarding the definition and measuring of quality of life. The search strategy included a combination of key words 'quality of life', 'definition of QoL' as well as 'measuring QoL' in titles using Medline and Google Scholar databases. Quality of life is a complex, multifaceted construct that requires multiple approaches from different theoretical angles. Scientists from the various disciplines of social science are encouraged to exploit the strengths of other’s contributions in a collaborative effort. A thorough understanding of subjective well-being requires knowledge of how objective conditions influence people’s evaluations of their lives. Similarly, a complete understanding of objective indicators and how to select them requires that we understand people’s values, and have knowledge about how objective indicators influence people’s experience of well-being.

Achieving the Best of Both Worlds

Achieving the Best of Both Worlds

Generic patient‐reported outcomes in child health research: a review of conceptual content using World Health Organization definitions

Our aims were to (1) describe the conceptual basis of popular generic instruments according to World Health Organization (WHO) definitions of functioning, disability, and health (FDH), and quality of life (QOL) with health-related quality of life (HRQOL) as a subcomponent of QOL; (2) map the instruments to the International Classification of Functioning, Disability and Health (ICF); and (3) provide information on how the analyzed instruments were used in the literature. This should enable users to make valid choices about which instruments have the desired content for a specific context or purpose. Child health-based literature over a 5-year period was reviewed to find research employing health status and QOL/HRQOL instruments. WHO definitions of FDH and QOL were applied to each item of the 15 most used instruments to differentiate measures of FDH and QOL/HRQOL. The ICF was used to describe the health and health-related content (if any) in those instruments. Additional aspects of instrument use were extracted from these articles. Many instruments that were used to measure QOL/HRQOL did not reflect WHO definitions of QOL. The ICF domains within instruments were highly variable with respect to whether body functions, activities and participation, or environment were emphasized. There is inconsistency among researchers about how to measure HRQOL and QOL. Moreover, when an ICF content analysis is applied, there is variability among instruments in the health components included and emphasized. Reviewing content is important for matching instruments to their intended purpose.

Quality of Life in Children and Adolescents Post-TBI: A Systematic Review and Meta-Analysis

Traumatic brain injury is (TBI) a leading cause of morbidity and mortality in children and adolescents in first-world nations. Research from our team investigating adult survivors of pediatric TBI indicate that survivors of severe TBI are particularly vulnerable to global impairments, including poorer school performance, greater employment difficulties, poor quality of life (QoL), and increased risk of mental health problems. Investigation into less observable consequences, including QoL, has emerged recently as an important outcome to assess in TBI populations. The status of QoL in pediatric TBI populations is mixed, likely a reflection of the varied methodological and theoretical perspectives on QoL. This systematic study will clarify the nature of QoL in survivors of pediatric TBI, and identify predictors of QoL in this group. Of 419 articles identified, 11 studies met our inclusion criteria, and 9 were ultimately analyzed in this review. Four studies reported good QoL and 5 poor QoL. The difference between good and poor QoL was statistically significant due to TBI severity [chi-square(3)=77.38, p<0.001], timing of outcome assessment [chi-square(1)=565, p<0.001], and definition of QoL [chi-square(3)=34.73, p<0.001]. The odds of having a poor QoL increased 5.8 times (RR=1.21) when injuries were more severe. Good outcomes are contingent on milder injuries, proxy reporting, and early assessment, whereas poor outcomes reflect more severe injuries and later assessment (≤ 6 months versus ≥ 1 year post-trauma, respectively).

Quality of life domains relevant to people living with HIV and AIDS who are on antiretroviral therapy in Swaziland

Quality of life (QOL) domains that are context specific to people living with HIV and AIDS (PLWHA) who are on antiretroviral therapy (ART) in Swaziland are unknown. This presents a problem when research has to be conducted on QOL of PLWHA who are on ART. As a result, this study was conducted to identify, validate and describe domains necessary to assess QOL of PLWHA, who are on ART in Swaziland. A qualitative, explorative, descriptive, and contextual design was used for this study. The first phase dealt with a review of fifty existing QOL definitions and the identification of the common domains amongst them. Findings from this review revealed that the most common domains of QOL are the physiological, psychological, spiritual and socio-economic domains. The second phase was the validation of the above common domains identified from the examined QOL definitions to make them context specific to PLWHA who are on ART in Swaziland. A workshop was used to validate the domains with expert nurses involved in the care of PLWHA in Swaziland. The experts in ART care were trained on ART and had more than a year's experience of working with PLWHA who are on ART. The validation process revealed that the essential context specific domains to consider when assessing QOL of PLWHA who are on ART are, (1) physiological domain, (2) psychological domain, (3) spiritual domain, (4) socio-economic domain, (5) cognitive domain, and (6) environmental domain. The process of validation of the domains was important as two extra domains were revealed, which were not initially recognised by the researcher during literature review.