Understanding Quality Of Life Research Articles

QL-09 * TRAJECTORY OF QUALITY OF LIFE AT END OF LIFE IN MALIGNANT GLIOMA: SUPPORT FOR THE TERMINAL DROP THEORY

Very little is known about quality of life (QOL) at end-of-life (EOL) in malignant brain tumor patients, which limits clinicians ability to best to help patients at this stage. The QOL trajectory at EOL has commonly been hypothesized to be decline, a linear relationship to time before death with a relatively gradual decline. Alternately, QOL at EOL could be hypothesized to be analogous to the theory of cognitive aging, wherein the patient QOL has a curvilinear relationship to time before death; a relatively flat curve with a rapid decline a short time before death. 89 patients with malignant glioma were enrolled in this NCI funded study of QOL and neurocognition. Patients completed the EORTC-QLQ-C30 at three month intervals until death. Mean length of follow-up was 224 days (median 155 days). Mean age of patients was 52 years (range 18-80). The gender ratio was 49% men and 51% women. One patient was Latino (so 97% Non-Hispanic), 69 participants were Caucasian, one was African American, and one was Native American. The mean educational level was 13 years (range 8-20). Twenty-eight patients had glioblastoma (grade IV), nine had a grade III oligodendroglioma, and six had a grade III oligoastrocytoma. Data were plotted over time to determine if the shape of the curve resembles terminal decline or terminal drop. Interestingly, as can be seen from the graph, Global QOL slightly improved over time. Growth Curve Analysis confirms this finding. Results of this study may supporting the terminal drop theory but may also illustrate response shift, a conundrum for QOL researchers in which patients' perspective changes and thus they report improved QOL. Longer follow-up is necessary to delineate this pattern. A better understanding of QOL at EOL will improve medical and psychosocial palliative care.

Illness perceptions matter: understanding quality of life and advanced illness behaviors in female patients with late-stage cancer

Patients with late-stage cancer are living longer, making it important to understand factors that contribute to maintaining quality of life (QOL) and completing advanced illness behaviors (eg, advance directives). To examine whether illness perceptions-the cognitive beliefs that patients form about their cancer-may be more important guides to adjustment than clinical characteristics of the cancer. In a cross-sectional study, 105 female patients diagnosed with stage III (n = 66) or IV (n = 39) breast (n = 44), gynecological (n = 38), or lung (n = 23) cancer completed self-report measures of illness perceptions, QOL, and advanced illness behaviors. Clinical data was obtained from medical records. Despite modest associations, patients' beliefs about the cancer were clearly unique from the clinical characteristics of the cancer. Illness perception variables accounted for a large portion of the variance (PS < .01) for QOL and advanced illness behaviors, whereas clinical characteristics did not. QOL scores were predicted by patients' reports of experiencing more cancer related symptoms (ie, illness identity), believing that their cancer is central to their self-identity, and higher income. Higher completion of advanced illness behaviors was predicted by higher income, the cancer being recurrent, and participants perceiving their cancer as more severe but also more understandable. This study was limited by a cross-sectional design, small sample size, and focus on female patients. Addressing patients' beliefs about their cancer diagnosis may provide important targets for intervention to improve QOL and illness behaviors in patients with late-stage cancer.

Understanding Quality of Life and Patient Expectations Among Adolescents With Neonatal Brachial Plexus Palsy: A Qualitative and Quantitative Pilot Study

To explore the quality of life (QOL) and patient expectations among adolescents with neonatal brachial plexus palsy (NBPP)and their parents using qualitative and quantitative approaches. A total of 18 adolescents (10-17 y) with residual NBPP impairment and their parents under went separate 1-hour tape-recorded semistructured interviews. We also collected quantitative physical examination measures and patient-rated outcome scores, specifically the Pediatric Outcomes Data Collection Instrument and the Child Health Questionnaire, to quantify the severity of each adolescent’s functional deficit and increase our understanding of QOL and patient expectations. Through qualitative analysis, we identified several patient- and system-dependent factors contributing to QOL, such as social impact and peer acceptance, emotional adjustment,aesthetic concerns and body image, functional limitations, physical and occupational therapy, finances, pain, and family dynamics. Despite residual impairment, most adolescents and their parents reported a good overall QOL according to quantitative outcome measures. Our study results showed that functional and aesthetic factors were responsible for most observed differences in QOL among NBPP adolescents. We also found that the Pediatric Outcomes Data Collection Instrument might be more sensitive than the Child Health Questionnaire in assessing patient expectations and QOL among this patient population. Understanding patient expectations and QOL in NBPP adolescents is essential for medical decision making and advancing care. Physical examination measurements alone may not be sufficient for measuring outcome, and knowledge regarding environmental factors and family dynamics is important for clinicians to consider when counseling families of children with NBPP and improving overall outcome. Prognostic IV.

Qualidade de vida em disfagia na doença de Parkinson: uma revisão sistemática

A doença de Parkinson pode causar distúrbios da deglutição em qualquer fase da doença devido às disfunções dos movimentos. Apesar da diversidade de sintomas, normalmente as alterações iniciais na deglutição do parkinsoniano são despercebidas e podem ocasionar prejuízo na qualidade de vida. Contudo, instrumentos que avaliam a qualidade de vida em disfagia na doença de Parkinson não têm sido sistematicamente estudados. Esta revisão sistemática objetivou identificar a utilização do questionário de Qualidade de Vida em Disfagia para avaliação na doença de Parkinson. Foram incluídos artigos com sujeitos de ambos os sexos e com doença de Parkinson idiopática, e excluídos os artigos de avaliação de tratamento e que apresentaram indivíduos com outra forma de parkinsonismo. Após a busca realizada nos portais da Bireme, Pubmed e Banco de Teses da Capes, foram analisados 30 artigos, dos quais dois foram incluídos depois da aplicação da Escala de Jadad modificada. Os dois artigos evidenciaram que o questionário de Qualidade de Vida em Disfagia é um instrumento seguro e relevante para avaliar alterações da deglutição do parkinsoniano nos domínios do instrumento, exceto no sono. Além disso, o questionário pode indicar uma compreensão da qualidade de vida geral. Sendo assim, a utilização do questionário de Qualidade de Vida em Disfagia contribuiu para avaliação da qualidade de vida em disfagia de sujeitos com doença de Parkinson.

Quality of Life Patterns and Survival Among Older People

As the numbers and proportions of elderly people in the global population increase, quality of life (QOL) within this group becomes an important research issue. Undertaking cross-national comparisons of elderly people can provide a better understanding of QOL patterns. This study examines QOL patterns using a harmonization data set from two longitudinal studies of the older people in the United Kingdom (UK) and Taiwan and explores the relationship between clusters of older people and mortality hazards in these countries. Data were derived from the 1989 wave of the Nottingham Longitudinal Study of Activity and Ageing and the Survey of Health and Living Status of the Elderly in Taiwan. Cluster analysis was used to observe QOL patterns in the older people and their profiles. Cox regression analysis was used to test for the presence of clusters associated with mortality hazards. Fifteen subgroups were extracted from cluster analysis of the Nottingham Longitudinal Study of Activity and Ageing sample (n = 690), and 20 groups were generated from cluster analysis of the Survey of Health and Living Status of the Elderly in Taiwan data set (n = 1,438). Cox regression analyses revealed a relationship between mortality risk and certain clusters over a 14-year period in the U.K. and Taiwan. Using cluster analyses to group the older people according to shared characteristics identified different QOL levels across these profiles both in the UK and Taiwan. The author also identified differences in the same profile levels between the two countries. It is important to explore the relationship between clusters and mortality hazards because clusters reflect important QOL factors affecting mortality risk.

Žmonių su psichine negalia gyvenimo kokybė

Quality of Life of people suffering from mental disorder was barely analysed in Lithuania. Analysis of quality of life in medicine usually is based on the measuring quantitative parameters in patients. Such measurements allow gather a lot of valuable and statistically reliable data, though scientific studies show [10; 14] that qualitative analysis can reveal unique and especially sensitive aspects. Because of this reason quality of life was analyzed in qualitative way in the article. Aim of the article is to analyse understanding of quality of life in a case of mental disorder. Two groups of respondents were analysed: the subjective understanding of quality of life was built on the interview with 10 people suffering from mental disorder, the objective is interviewing 29 people not having disability. Research methods: literature analysis, qualitative research (narrative). The research results revealed differences in objectively and subjectively understanding quality of life. People suffering from mental disorder understand their quality of life as having close person in life, employment, ab-sence of control, material safety. Though objectively understand-ing quality of life in society is understood as visits in self-support groups, integration, social participation.

Quality of life themes in Canadian adults and street youth who are homeless or hard-to-house: A multi-site focus group study

BackgroundThe aim of this study was to identify what is most important to the quality of life (QoL) of those who experience homelessness by directly soliciting the views of homeless and hard-to-house Canadians themselves. These individuals live within a unique social context that differs considerably from that of the general population. To understand the life areas that are most important to them, it is critical to have direct input from target populations of homeless and hard-to-house persons.MethodsFocus groups were conducted with 140 individuals aged 15 to 73 years who were homeless or hard-to-house to explore the circumstances in which they were living and to capture what they find to be important and relevant domains of QoL. Participants were recruited in Toronto, Ottawa, Montreal, and Vancouver. Content analysis was used to analyze the data.ResultsSix major content themes emerged: Health/health care; Living conditions; Financial situation; Employment situation; Relationships; and Recreational and leisure activities. These themes were linked to broader concepts that included having choices, stability, respect, and the same rights as other members of society.ConclusionsThese findings not only aid our understanding of QoL in this group, but may be used to develop measures that capture QoL in this population and help programs and policies become more effective in improving the life situation for persons who are homeless and hard-to-house.Quality of life themes in Canadian adults and street youth who are homeless or hard-to-house: A multi-site focus group study.

Quality of life: a reappraisal

PurposeWith this reappraisal, the purpose of this paper is to present a reflexion on and discussion of the concept of quality of life (QL) with the intention of delimiting its meaning and application within the scope of the research project entitled “Costs and benefits of urban dispersion on a local scale”.Design/methodology/approachThe concept of QL contains a significant degree of complexity and multidimensional variables, in addition to the dynamic nature inherent in all social phenomena. The application of this concept at a local level and within the context of the Portuguese socio‐territorial reality requires rethinking the concept through the different authors and approaches, in order to delineate the research process, and guarantee its operationalisation, selecting the social indicators than can serve this purpose, with the intent of gaining a clearer understanding of QL as perceived and evaluated by the people and groups living in various dispersed urban areas.FindingsFrom the readings of literature in the field, one can understand the importance of choosing the relevant domains when analysing and measuring QL. As with the choice of indicators, in order to be able to measure the QL, simultaneously, at a local level, the choice of indicators and the delimitation of units of analysis are also fundamental in order to be able to obtain the comparison and real measure of quality of life and not the contingencies of specific contextual characteristics.Originality/valueThe study aims to open a new research perspective in the field of social sciences, more specifically in the areas related to QL and urban dispersion.

Caring, Quality of Life and Service Provision: A Perspective

This paper features Quality of Life (QoL) assessment in care provision, including the author’s own research with Alzheimer’s Disease and residential and day care services for adults with Learning Disabilities. Features of epistemology, methodology and methods are examined which may be unchallenged in the rush for objective empirical data. These unquestioned features may impede the development of theory and practice in this field. Questions include: What is meant by QoL in this type of highly artificial socially complex environment? What are the underlying assumptions in the way QoL is measured? Have underlying philosophical assumptions informed theory and aided understanding of QoL? What about the beliefs and attitudes of front line staff, those involved with clients? How do political, policy and other aspects of ‘praxis’ operate in caring environments? Rather than QoL and embedded services being measured in empirical terms, there is space available for a constructionist conceptualization; the latter need not sit uneasily with the former. The reality of, and within, care delivery processes should be challenged. Elements of hermeneutic enquiry and phenomenological psychology could help decipher the manifestations of the above phenomena, via accounts of the lived experiences and personal accounts of staff and carers.

Beyond facts: understanding quality of life

Traditionally, the concept of quality of life has been viewed through objective indicators. Beyond Facts looks at quality of life through a new lens, namely, the perceptions of millions of Latin Americans. Using an enhanced version of the recently created Gallup World Poll that incorporates Latin America-specific questions, the Inter-American Development Bank surveyed people from throughout the region and found that perceptions of quality of life are often very different from the reality. These surprising findings have enormous significance for the political economy of the region and provide a wealth of information for policymakers and development practitioners to feast upon.

Patients’ understanding of the concepts of health and quality of life

Objective The aim of this study was to identify how persons’ with rheumatoid arthritis (RA) understand the concepts of health and quality of life (QoL). Methods A phenomenograpic approach was used to gauge variations in understanding of health and QoL. Semistructured interviews were conducted with 22 persons having RA. The interviews were audiotaped, transcribed verbatim, and analyzed, resulting in a descriptive system consisting of categories and subcategories. Results Health was primarily associated with being healthy/being free from disease, being able to function normally, experiencing well-being, and having a healthy lifestyle. Two above-mentioned domains, “being healthy” and “being able to function normally” overlapped with respondents’ understanding of QoL. Additional perceived domains included attitudes towards life and, social and physical environments. Conclusion The results show that patients’ understanding of the two concepts of health and QoL partially overlap and partially differ. Practice implications Patients’ understanding of the concepts is individual and diverse, which needs to be taken into account in patient–physician consultations to ensure good communication. Furthermore, the interpretation of results based on patient-reported outcomes instruments measuring health status and/or QoL needs to be further studied over time to identify possible changes in these conceptions.

In reply to Mauer et al. “Statistical methodology is crucial in prognostic factor-analysis of health-related quality of life”

I would like to thank Dr. Mauer and researchers from the European Organisation for Research and Treatment of Cancer (EORTC) [1] for their important comments on our recent publication regarding health-related quality of life (QOL) in gastric cancer patients treated with first-line chemotherapy [2]. They express their opinion that the modeling strategy lacked clear selection criteria and validation. Clearly our analysis, which was conducted in a single center on a relatively small number of patients, did not establish a definitive causal relationship between baseline QOL and survival. However, there is agreement that QOL provides an assessment of patient well-being as well as of cancer survival [3]. As clinical researchers, we share Dr. Mauer’s conclusion that the results lacked adequate validation. Although external or internal validation of our final model can be readily performed these days, bootstrap is a computationally very expensive technique. The prognostic value of social functioning in our analysis, as shown in Fig. 1, was evident (the absolute difference of 1-year mortality was 0.27; 95% confidence interval [CI] of 0.8–0.87). Patients with major comorbidities or poor performance status were excluded from our randomized trials. The absolute survival advantage, therefore, most likely overestimate the advantage in the general population of gastric cancer patients. We also emphasize that our analysis represents only a small sample of patients and that patients treated with different chemotherapy regimens were included. What is clear at this time is that pretreatment measurement of QOL could help doctors in their clinical decisions as it relates to patients’ expected survival. In addition to providing prognostic information, QOL assessment may be useful to improve communication with the patient and help doctors to design tailored supportive care based on correct identification of the overall burden of symptoms, the relative importance given to each of them by the patient, and the patient’s expectations regarding treatment efficacy. Nevertheless, our results, as well as a recently published validation study by EORTC [4], may be helpful for clinical understanding of QOL in cancer patients.

Quality of life concerns and end‐of‐life care preferences of aged persons in long‐term care facilities

This study aimed at understanding quality of life (QOL) concerns and end-of-life care preferences of older people living in long-term care facilities in Hong Kong. Previous studies about the QOL of residents in long-term care facilities were often from a qualitative perspective, because it could yield an in-depth description of the experience. Quantitative studies in this area were not only scarce, but also less specific in capturing the concerns of this vulnerable group. Their forethought about their care planning was also overlooked. We successfully interviewed 287 older residents from 10 long-term care homes using the modified Quality-of-Life Concerns in the End of Life Questionnaire (QOLC-E) in a cross-sectional survey. The mean (SD) ages of the frail and non-frail groups were 83.8 (6.74) and 82.35 (5.82) respectively. The majority of them were female and widowed. Existential distress, value of life and food-related concerns were the least desirable QOL concerns in both groups. Considerable numbers were uncertain about their end-of-life care preferences and they preferred their physician to be their surrogate. The older residents had similar QOL concerns as patients with terminal or advanced diseases. Most of the older residents welcomed discussion about death and dying but had not planned for their end-of-life care and had a high regard for their physicians' authority. The results reveal the major QOL concerns among the older residents living in long-term care facilities. This study, which is an initial step in profiling the older people's end-of-life care preferences, also shed light on how to formulate advance care planning in long-term care facilities.

Studies of the inner life: the impact of spirituality on quality of life.

This article defines spirituality and relates the importance of spirituality to understanding quality of life. Spirituality is examined through organizational religious activities, non-organizational activities and/or as an expression of faith. Spirituality as a variable in the study of quality of life is not a new concept; however, it has returned to the scene during recent years, and has gone through an evolutionary process.

NON-FARM RURAL ONTARIO RESIDENTS' PERCEIVED QUALITY OF LIFE

This paper presents a study of Ontario non-farm ruralresidents’ perceived quality of life. The researchsought to understand residents’ perceived quality oflife both in absolute and relative terms. Measurementfocused on indicators of satisfaction with personallife, community and environment and quality of life incomparison to others. A pre-tested questionnaire wasmailed to a random sample of non-farm rural residentsin Brock and Uxbridge Townships, which lie within onehour’s drive northeast of metropolitan Toronto. Nearly forty-two (41.8) percent of the residentsreturned completed questionnaires. The majority ofrespondents indicated they were satisfied with mostaspects of the quality of their lives. The demographiccharacteristics that were consistently found to havesignificant associations with indicators of absolutequality of life and relative quality of life wereincome, length of residency, presence or number ofchildren in the home and township. Other demographiccharacteristics almost as consistently found to besignificantly associated with indicators of absoluteand relative quality of life were gender, followed byage, marital status, amount of land surrounding thehome and education. Comparing objectively-baseddemographic characteristics and more subjectivelyderived indicators of absolute and relative quality oflife provided a useful way of understanding quality oflife perceptions of Ontario rural non-farmresidents.

Quality of life in cancer patients: use of a revised Hospice Index.

Improving or maintaining the quality of life for persons with cancer is a major goal of end-of-life care; however, to measure quality-of-life outcomes, a valid and reliable measure is needed. The purpose of this project was to report the psychometric properties of the revised Hospice Quality of Life Index (HQLI), including validity and reliability for hospice patients with cancer. Data were collected from home care hospice patients with cancer (n = 255) and a group of apparently healthy adults in the community (n = 32). The revised HQLI is a 28-item self-report instrument that includes three subscales: Psychophysiological Well-being, Functional Well-being, and Social/Spiritual Well-being. Evidence for validity was provided in three ways. First, factor analysis confirmed the three subscales (Psychophysiological, Functional, and Social/Spiritual Well-being). Second, a weak significant correlation was found between the Easterm Cooperative Oncology Group Performance Status Rating scores and HQLI scores (r = .26; P = .00). Third, the HQLI was able to discriminate between hospice patients with cancer and apparently healthy adults (lambda = .34; P = .00). In addition, the mean scores of these two groups were significantly different (t = 6.64; P = .00). However, only a minimal difference in scores was found on the Social/Spiritual Well-being subscale between the cancer and healthy groups. Reliability for the revised HQLI was high for both the total scale (alpha = .88) and the subscales (alpha =.82-.85). Emphasis has been placed recently on understanding quality of life from the patient's perspective. The development of a valid and reliable tool can guide care givers in providing meaningful quality-of-life care. The HQLI provides patients the opportunity to express beliefs about quality-of-life issues and to maintain direction over a critical aspect of their care. Of note from this study, the significant difference between groups in functional well-being and minimal difference in social/spiritual well-being suggest that patients are able to appraise their functional abilities realistically and still maintain their social network and spiritual beliefs. Indeed, it may be that patients give family relationships and spiritual beliefs greater focus during a terminal illness.

Cross-cultural development of a quality of life measure for men with erection difficulties.

Erection difficulties have a profound effect on a man's quality of life, however, the emotional consequences are often overlooked in quantitative research where most sex-related questionnaires focus on a man's functional ability. Consequently, we developed a cross-cultural instrument to measure quality of life specific to male erection difficulties (QOL-MED). The items in the QOL-MED originated from interviewing forty men with erection difficulties In Seattle and Boston. Twelve men in the USA and 29 men in England helped us refine the instrument. Testing the QOL-MED's psychometric properties involved two administrations over a two-week period in the USA (n = 40) and the UK (n = 29). For discriminant validity, we predicted quality of life would worsen with increased self-perceived severity of the condition. After controlling for years with erection difficulties in a linear regression model, we found a significant negative association between self-perceived severity and quality of life for men in the UK only (p < 0.01). The expectation that the measure would produce evidence for convergent validity by being more closely correlated to well-being than functional status was not confirmed. Both the USA and UK instruments were internally consistent (Cronbach's alpha = 0.94 and 0.96, respectively), and reproducible (0.78 and 0.95, respectively). This instrument provides a promising tool for studying therapies and understanding quality of life in patients with erectile dysfunction.