Definition Of Quality Of Life Research Articles

Ethical Principles in Patient-Centered Medical Care to Support Quality of Life in Amyotrophic Lateral Sclerosis.

It is one of the primary goals of medical care to secure good quality of life (QoL) while prolonging survival. This is a major challenge in severe medical conditions with a prognosis such as amyotrophic lateral sclerosis (ALS). Further, the definition of QoL and the question whether survival in this severe condition is compatible with a good QoL is a matter of subjective and culture-specific debate. Some people without neurodegenerative conditions believe that physical decline is incompatible with satisfactory QoL. Current data provide extensive evidence that psychosocial adaptation in ALS is possible, indicated by a satisfactory QoL. Thus, there is no fatalistic link of loss of QoL when physical health declines. There are intrinsic and extrinsic factors that have been shown to successfully facilitate and secure QoL in ALS which will be reviewed in the following article following the four ethical principles (1) Beneficence, (2) Non-maleficence, (3) Autonomy and (4) Justice, which are regarded as key elements of patient centered medical care according to Beauchamp and Childress. This is a JPND-funded work to summarize findings of the project NEEDSinALS (www.NEEDSinALS.com) which highlights subjective perspectives and preferences in medical decision making in ALS.

Understanding quality of life within occupational therapy intervention research: A scoping review

There is little consensus regarding the meaning of quality of life (QOL) within occupational therapy literature. Measurement of QOL has varied in both research and practice. This scoping review explored the definitions and measures used within occupational therapy quantitative intervention research to evaluate QOL as an outcome. The review was completed by searching six databases using occupational therapy-related and QOL-related terms. Data were extracted from each article and authors performed descriptive statistics to establish trends for both definitions and measures. Eighteen publications met the inclusion criteria. Seven articles included a definition of QOL. Most authors defined QOL as a multidimensional construct, comprised of varying domains. Fourteen different standardised measures and two non-standardised measures were utilised. A clear conceptualisation of QOL that incorporates occupational therapy values such as client-centredness and holism is needed to advocate for the profession's role in health care and to encourage the development of suitable outcome measures.

PERCEPTION OF QUALITY OF LIFE AMONG COMMUNITY IN SELANGOR

The quality of life (QOL) is a subjective matter that has been diversely defined by scholars. Since 1930s researchers from various fields have expressed interests in the definition of QOL, including investigating and measuring QOL using different methods. Over the last four decades, Malaysia has made remarkable achievements regarding its economic growth as well as its socio-economic development. Numerous factors have been identified that may affect the quality of life of people according to their personal preferences. For example, the quality of the individual work as an engineer may differ with the quality of life of an individual work as a teacher. Nevertheless, how the individual itself measures the quality of life can be different between each other. Definitions of quality of life are as numerous and inconsistent as the methods of assessing it. This paper highlights the perception towards the quality of life for the community living in the state of Selangor. The objectives of this research are to identify the current living condition in Selangor and the level of satisfaction towards the living condition in the State. Data was obtaine through a questionnaire survey of 500 respondents living in Selangor. The outcome of the study indicates that the community in Selangor measured their quality of life differently based on their socio-economic background. Also, several indicators and action were highlighted by the community to be considered as part of the recommendation to improve the current living standard towards a better quality of life in Selangor.

PERCEPTION OF QUALITY OF LIFE AMONG COMMUNITY IN SELANGOR

The quality of life (QOL) is a subjective matter that diversely defined by scholars. Since 1930s researchers from various fields have expressed their interest in the definition of QOL especially on the methods of investigation and measurement of QOL. Over more than four decades, Malaysia has made remarkable achievements regarding its economic growth as well as its socio-economic development. Numerous factors have been identified that may influence the quality of life of the people according to their personal preferences. For example, the perception or the satisfaction on the quality of an engineer may differ from an individual working as a teacher. Hence, how an individual measures their own quality of life can be different between another. The definitions and the method of assessing quality of life among communities are numerous and varied. This article assessed the perception of respondents on the quality of life among communities living in Selangor. The research objectives are to identify the current living condition in Selangor and to assess the level of satisfaction towards the living condition by the respondents living in Selangor. The study used quantitative research method where 500 respondents living in Selangor were surveyed and the questionnaire for the study comprises of questions on the satisfaction of living condition within the respondent areas. The preliminary analysis identified that the perception on the quality of life are significantly influenced by the respondent’s socio-economic background. Recommendation such as improvement in the physical conditions and continuous maintenance of the surrounding area within the neighbourhood were highlighted by the community as methods to improve the current living standard towards a better quality of life of the communities.

Contextualizing the lived experience of quality of life for persons with spinal cord injury: A mixed-methods application of the response shift model

Objective: The objective of this study was to gain greater insight into individuals’ quality of life (QOL) definitions, appraisals, and adaptations following spinal cord injury (SCI).Design: A mixed-methods design, applying the Schwartz and Sprangers response shift (RS) model. RS is a cognitive process wherein, in response to a change in health status, individuals change internal standards, values, or conceptualization of QOLSetting: Community-dwelling participants who receive medical treatment at a major Midwestern medical system and nearby Veterans’ Affairs hospital.Participants: A purposive sample of participants with SCI (N = 40) completed semi-structured interviews and accompanying quantitative measures.Interventions: Not applicable.Outcome Measures: Qualitative data were analyzed using content analysis to identify themes. Analysis of variance were performed to detect differences based on themes and QOL, well-being, and demographic and injury characteristics.Results: Four RS themes were identified, capturing the range of participant perceptions of QOL. The themes ranged from complete RS, indicating active engagement in maintaining QOL, to awareness and comparisons redefining QOL, to a relative lack of RS. Average QOL ratings differed as a function of response shift themes. PROMIS Global Health, Anxiety, and Depression also differed as a function of RS themes.Conclusion: The RS model contextualizes differences in QOL definitions, appraisals, and adaptations in a way standardized QOL measures alone do not.

Postnatal quality of life — A content analysis of qualitative results to the Mother-Generated Index

BackgroundThe Mother-Generated Index (MGI) assesses postnatal quality of life (QoL) without providing a predefined checklist, thus offering mothers the opportunity to identify areas of life affected by having a baby. AimTo identify: (a) details and particularities of areas of life affected after childbirth and thus specific domains defining postnatal quality of life; (b) changes in the importance of domains specifying QoL within the first weeks postpartum; and (c) the potential role of cultural differences with regard to the nature of QoL definitions. MethodsProspective, cross-cultural, longitudinal survey. We applied a qualitative content analysis to Mother-Generated Index data collected in Switzerland and Germany using combined deductively and inductively category building. ResultsWomen participated at three days (n=124) and six and a half weeks (n=82) postpartum. Eleven domains were identified, each with several subdomains: ‘physical well-being’ (e.g. fatigue), ‘psychological well-being’ (e.g. happiness, emotional confusion), ‘general well-being’, ‘motherhood’ (e.g. bonding with the baby), ‘family and partnership’ (e.g. time for partner and children), ‘social life’ (e.g. friends, being isolated), ‘everyday life’ (e.g. organisation daily routine), ‘leisure’ (e.g. less time), ‘work life’ (e.g. worries about job), ‘financial issues’ (e.g. less money), and further aspects. The most frequently indicated domains were ‘motherhood’ and ‘family and partnership’. Differences between the stages of assessment and countries were identified. DiscussionMothers faced challenges in defining their new role but welcomed the slowdown in the rhythm of life and experienced overwhelming maternal feelings. ConclusionOur findings suggest that postnatal quality of life is a concept that changes over time and differs between countries.

COMPARISON OF QUALITY OF LIFE OF PATIENTS WITH LOCAL DISTRIBUTED BREAST CANCER FORMS AFTER CHEMOTHERAPY IN REGIONAL AND SYSTEM REGIMES

For several decades, breast cancer (BC) undoubtedly ranks first in the structure of oncopathology and is the most common cause of the loss of working capacity of the female population in most countries. Considering the increasing quality of care for patients with breast cancer, there is the need for standardization and implementation of methods to assess not only quantitative but also qualitative component of a comprehensive opinion on the results of therapy. Therefore, an important indicator to be taken into account is the quality of life (QL) of a patient. Definition of QL of patients with inoperable forms of locally advanced breast cancer before and after neoadjuvant courses of systemic polychemotherapy (SPCT) and selective intra-arterial polychemotherapy in combination with systemic (SIAPCT). 154 patients with LA BC T4A-DN0-3M0, who received comprehensive treatment on the basis of the Donetsk regional antitumor center and the University clinic of the Odessa National Medical University during the period from 2000 to 2017, who received SPCT or SIAPCT as a neoadjuvant course, were included in the study. According to the quality of life during the treatment period, wavelike dynamics with a clear advantage of selective intra-arterial polychemotherapy over the system was observed. According to the quality of health between groups, the marginal statistically significant difference in favour of regional PCTs was formed. In a detailed study of each of the options found stable symptomatic scale dependent components of the integral index of quality of life on the severity and duration of intoxication syndrome. On the basis of the results obtained, the statistical advantage of the RMRM remains with the regional PCT. The QL study is a reliable, informative and economical method for assessing the health status of the patient, both at the group and at the individual level. In cancer studies, the evaluation of QL is an important criterion for assessing the effectiveness of treatment and has a prognostic value.

Subjective cognitive impairment and quality of life: a systematic review.

Older adults with subjective cognitive impairment (SCI) experience increased affective symptoms, reduced engagement in a range of activities, as well as more functional problems when compared to those without SCI. These associations suggest that SCI may be detrimental to older adults' quality of life (QoL). The purpose of this paper is to advance understanding of the SCI-QoL relationship through a comprehensive review of the empirical literature relating SCI and QoL. A systematic literature review was conducted in CINAHL, PsycINFO, and PubMed per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses criteria. Eligible articles were appraised using the weight of evidence (WoE) framework to evaluate methodological quality, methodological relevance, and topic relevance. A narrative synthesis of results was conducted, based on conceptual definitions of QoL. Eleven articles were identified that met eligibility criteria. WoE ratings ranged from low to high scores. Studies reviewed reported that the presence, greater frequency, or greater severity of SCI is associated with lower QoL regardless of methodological quality rating, sample characteristics (e.g. geographic location, clinical vs. community settings), study design (e.g. cross-sectional vs. longitudinal), and operationalization of SCI or QoL. Across studies, QoL was negatively associated with SCI. However, a frequent limitation of the reviewed literature was the mismatch between the conceptual and operational definitions of SCI and QoL. Similarly, SCI measures varied in quality across the reviewed literature. This suggests future empirical work should focus on the appropriate strategies for conceptually and operationally defining these constructs.

Payers, patients, and physicians understanding of quality of life, functional status, and their importance relative to survival in triple-negative breast cancer.

e18156 Background: Value has taken center stage in US oncology treatment as evidenced by the growth of value frameworks and value-based pricing/contracting. These efforts include assessment of quality of life (QoL), survival, and functional status (FS), but the perspectives of payers, patients, and physicians are relatively unknown. We explored the relationships between QoL, FS, and survival in triple negative breast cancer (TNBC) and their importance relative to each other among the 3 key interviewed groups. Methods: Hour-long phone interviews with 6 individuals with TNBC and web-assisted phone interviews with 6 payers and 6 medical oncologists in the US were conducted. Respondents were asked how they differentiate QoL and FS, and how, relative to survival, each impacts their view of TNBC treatment. Results: For payers, QoL and FS are commonly confused and viewed as both supplementary and less important than survival metrics; however, they do desire to understand how each predicts survival. Oncologists prioritized survival, other clinical endpoints, and safety, but believed QoL and FS were very important. Moreover, they assess QoL by the adverse events experienced while on treatment, and view FS as being more objective. For patients, QoL and FS are intermingled, falling under a broad category of QoL. FS was poorly understood, and survival was viewed as critical to meaningful QoL. The threshold at which QoL overrides survival was the point at which patients consider themselves a burden to others. Conclusions: The definitions of QoL and FS used by health services researchers who define “value” is out of sync with patients, payers, and sometimes physicians, making communication of this important information to the individuals interviewed difficult. While the perceived value of QoL and FS varies, and considering the limited treatment options available for TNBC, survival supersedes both measures such that QoL and FS are nearly disregarded. [Table: see text]

Quality of Life After Bariatric Surgery.

The purpose of this review is to provide an introduction to quality of life (QOL) outcomes after bariatric surgery and a summary of the current evidence. QOL has been emphasized in bariatric surgery since the NIH Consensus Conference statement in 1991. Initial studies were limited to 1- and 2-year follow-up. More recent findings have expanded the follow-up period up to 12years, providing a better description of the impact on long-term QOL. Overall, there is little to no consensus regarding the definition of QOL or the ideal survey. Bariatric surgery has the greatest impact on physical QOL, and the impact on mental health remains unclear. There are some specific and less frequently reported threats to quality of life after bariatric surgery that are also discussed. Obesity has a definite impact on quality of life, even without other comorbidities, and surgery for obesity results in significant and lasting improvements in patient-reported quality of life outcomes. This conclusion is limited by a wide variety of survey instruments and absence of consensus on the definition of QOL after bariatric surgery.

Quality of life among children with spina bifida in Uganda

BackgroundChildren surviving after spina bifida repair often have significant disability, the consequences of which may be more profound in low-income countries. The aim of this cross-sectional study was to measure...

Conceptual Issues Surrounding Quality of Life in Oncology Nursing.

Quality of life (QOL) is a critical, prevalent, and enduring concept in oncology nursing research and practice. QOL is a paramount issue in the consideration of treatment, goal planning, and decision making for individuals with cancer, their families, and their care providers. Journals, well-developed valid and reliable instruments, and multiple conceptual models and frameworks are devoted to QOL. This column will review two broad conceptual aspects to consider in relation to QOL. First, conceptual considerations will be discussed for the definition and measurement of QOL. Second, conceptual issues related to QOL as an outcome will be discussed.

Evaluation of individual quality of life among hemodialysis patients: nominated themes using SEIQoL-adapted.

BackgroundQuality of life (QoL) has become an important issue for patients with chronic renal failure diseases who are permanently undergoing hemodialysis. In this study, an adapted schedule for the evaluation of individual quality of life (SEIQoL-adapted) was used to evaluate QoL among hemodialysis patients, to explore their views about the most important aspects of life satisfaction.Methods and resultsA multiple approach design and convenience sampling were applied to recruit 53 patients from a hemodialysis unit in Iran. Data were collected through structured interviews and then analyzed using conventional content analysis. A total score for QoL was calculated using scale guideline. The most important aspects of life were health, family, financial status, living conditions, leisure activities, relationships and socializing, religious and spiritual issues, medical knowledge, and therapies or treatments. The calculated mean QoL score was 66.2, indicating a relatively high life satisfaction. Males had higher QoL scores than females in both married and single groups. Moreover, the relationships between the QoL scores and education, job and marital status were not statistically significant.ConclusionThe SEIQoL-adapted revealed reasonable lay definitions of QoL in a group of patients following chronic renal failure. The patients’ views of the aspects of life could be used by health policy makers, clinicians, and caregivers as a reliable guide to the most important priorities for treatment and medical interventions.

Vital Signs Evaluation of Human Behaviour via an Autonomous Body Area Network System

Enhancing Quality of Life (QOL) has long been an explicit and implicit goal for individuals, nations, and the world. QOL involves diverse multidimensional factors spanning wealth, physical health, social well-being, and international relationships. This study presents a definition of QOL combining the measurement of health-related QOL with an autonomous Body Area Network System (BANs). A method of evaluating vital signs is performed and linked to physical intensity assistance in exercise. Specifically, BAN acts as a supportive system which can assist a user in monitoring his or her body's parameters, providing real-time feedbacks and dynamically sharing information from any location to one or more users.

Dementia-specific quality of life instruments: a conceptual analysis.

Over the past 20 years, many researchers have worked in developing various methods for measuring quality of life (QoL) of people with dementia. The aim of this review is to develop the conceptual frameworks of the dementia-specific QoL instruments, to identify their evolution over time and to provide elements of reflection on the QoL concept in dementia and its evaluation. An electronic search was conducted on PsycINFO and MEDLINE databases, from January 1985 to June 2015 using a combination of key words that include QoL, dementia, and review. The analysis of the conceptual frameworks of the 18 selected dementia-specific QoL tools shows a great diversity in: (1) the QoL definitions (e.g. health-related QoL definitions, QoL definitions based on Lawton's work, or similar to this latter); (2) the theoretical QoL models (e.g. Lawton' work and modified Lawton, adaptation, personhood); (3) the domains and dimensions; (4) the way to construct the instrument (e.g. development based on literature, opinion of the experts), and (5) the items' formulation (e.g. use of criterion of intensity or frequency). There are different conceptual frameworks in the dementia-specific QoL measures with improvements over time (e.g. inclusion of interesting concepts such as adaptation, taking into account the views of patients themselves). Each of the conceptual parameters (definitions, models, domains, and dimensions) is discussed to identify the scales that are conceptually the strongest. Through their review, recommendations for future instrument refinement and development are discussed and a new QoL definition is proposed.

Late-stage lung cancer patient preferences about chemotherapy treatment adverse side effects.

93 Background: Patients’ preferences regarding treatment adverse events are not systematically considered when choosing a treatment for stage lung cancer. Further, there is no clinical guide for patients or physicians on how to integrate patient preferences of adverse events in treatment and care decisions. Although it is assumed that most cancer patients prefer either an active or a shared role in decision making, particularly in late stage cancers. Our specific aim of this abstract is: Aim: Determine whether individual patients’ preferences, characteristics, and treatment experiences affect the meaning of chemotherapy treatment success. Methods: We have completed two years of our three-year research using a mixed method study design, which includes focus groups, cross-sectional, prospective, and randomized experimental designs. We initially selected three cancer centers in Nebraska and one in South Dakota for patient and provider recruitment. Currently, we have six cancer centers participating in this multi-center Patient Centered Outcomes Research. Results: Four focus groups were conducted with 36 participants that included patients, family members and caregivers and oncology providers. Patients and caregivers confirmed that survival alone is not their measure of lung cancer treatment success Definition of treatment success should emphasize effective clinical guidance throughout treatment, symptom management, functionality, and quality of life Definition of treatment success evolves over time, appearing to be linked to patients’ experiences with chemotherapy. Participants advocated for better patient-provider communication practices as well as the expanded use of patient navigation and new patient orientation programs. Conclusions: Late stage lung cancer patients have definite opinions about the impact of adverse treatment effects on their quality of life.

Chapter 18 - Psycho-oncology

Psycho-oncologic care for glioma patients has two important aspects. First, clinical decision making regarding treatment of the tumor should reflect a sound balance between quality and quantity of life. Second, supportive care should be targeted at the symptoms that are most detrimental to perceived quality of life (QOL) of glioma patients, and of their informal caregivers. In this chapter we will first focus on the definition of QOL and the ways of measuring this adequately in clinical trials, and then discuss the impact of the disease itself, and of established and experimental treatment modalities on perceived QOL. Subsequently, we will discuss frequently occurring symptoms that have an impact on the perceived QOL of glioma patients and their caregivers. This will include what is known about the efficacy of symptomatic treatment and maintaining or improving QOL in both patients and caregivers, followed by recommendations for future directions of clinical care and research.

Quality of life in osteogenesis imperfecta: A mixed-methods systematic review.

Clinical interventions and research have mostly focused on the orthopedic, genetic, and pharmacological outcomes of individuals with osteogenesis imperfecta (OI), and although quality of life (QoL) has gained recognition as an important patient-outcome, it has received little attention in individuals with OI. This mixed-methods systematic review of the literature included five search engines and identified a total of 212 articles. Once study eligibility was reviewed, 10 studies met the inclusion criteria and were included in this mixed-methods review (9 quantitative and 1 qualitative). Among the 10 included QoL studies, six reported on children with OI, three on adults with OI, and one on the parents of children with OI. Physical QoL in children and adults with OI appears to be less than that of the general population, with individuals with more severe OI types reporting worse QoL. On the other hand, mental and psychosocial QoL is the same or better in individuals with OI than that of the general population. Pain, scoliosis activity limitations and participation restrictions due to decreased function are associated with lower levels of physical QoL. Researchers must agree on a definition of QoL as it relates to OI and use validated measures appropriate for evaluating QoL in OI. Pediatric studies should consider both the child and the parent's QOL perceptions as these may differ. QoL in the adult population should not be dismissed in order to offer proper client-centered interventions throughout the lifespan.

The definition and role of quality of life in Germany's early assessment of drug benefit: a qualitative approach.

In 2011, Germany introduced a new form of drug benefit assessment, linking reimbursement prices to drug benefit and making quality of life (QoL) one of the main benefit criteria. Thus, QoL outcomes co-determine drug prices in Germany. QoL has, however, not been defined in the regulations. This study analyzed the definition and role of QoL in Germany's drug benefit assessment. It serves as a case study on the complexity of QoL as a parameter of health technology and drug assessments, which have become mandatory in almost all industrialized countries. In a qualitative analysis, the publicly available dossiers (summaries), dossier evaluations, protocols of the oral hearings, the final resolutions of the Federal Joint Committee (G-BA) and its rationale of all benefit assessments completed by 2013 (n=66) were processed. Additionally, quantitative data on the decision outcomes were collected. Only two decisions drew on QoL outcomes as "main justifications" for additional benefit. It was due to a lack of valid and statistically significant QoL results, a deficient presentation of QoL data, or differing understandings of QoL, that QoL benefit was not demonstrated in more than two cases. While manufacturers applied wider definitions of QoL, the assessment institutions questioned evidence if it was not reported with the help of validated QoL questionnaires or deviated from their definition of QoL. The German experience with QoL as a drug benefit criterion highlights the importance of a clear QoL definition and according methodological regulations.

Quality of life assessment in domestic dogs: An evidence-based rapid review

Assessment of quality of life (QoL) is an important, increasingly popular outcome measure in veterinary research and practice, particularly in dogs. In humans, QoL is commonly assessed by self-reporting and since this is not possible for animals, it is crucial that instruments designed to measure QoL are tested for reliability and validity. Using a systematic, replicable literature search strategy, the aim of this study was to find published, peer-reviewed instruments for QoL assessment in dogs and to assess the quality of these. CAB Abstracts and PubMed were searched in July 2013 using terms relevant to dogs, wellbeing and QoL. Inclusion and exclusion criteria were applied. When instruments were not published in full, authors were contacted to obtain them. Criteria were applied to assess the quality, validity and reliability of the 52 instruments obtained. Twenty-seven additional instruments used in peer-reviewed publications were not included because they had not been fully described in the publication or were not provided by authors upon request.Most of the instruments reviewed (48/52) were disease-specific rather than generic. Only four publications provided a definition of QoL or wellbeing. Only 11/52 instruments demonstrated evidence of assessing reliability or validity, and the quality of these instruments was variable. Many novel, unvalidated instruments have been generated and applied as clinical outcomes before it was known whether they measured QoL. This rapid review can be used to identify currently available and validated canine QoL instruments, and to assess the validity and quality of new or existing instruments.