A review of scales for assessment of the quality of life (QOL) in patients with oral cavity cancer

This article is a review of the quality of life (QOL) research in oral cavity cancer patients. The authors set out to carry out this study because research on the problem is still in its infantile period. Most authors use the following scales for assessment: Scale 1 - ability to eat in public; comprehensible speech; normal diet; change in taste, Scale 2 - social adaptation; pain and disfigurement, Scale 3 - determination of the physical and functional status; psychological status; social functioning, Scale 4 - reproduction/pastimes; sleep/rest; home management; work; eating, Scale 5 - fatigue and QOL. One of the indices most frequently used to measure cancer patients' quality of life is the Karnofsky's scale. The Karnofsky's index is determined by two independent factors: the patient oncologist and the nursing team, who perform evaluations on the basis of the patient's response. The differences between these two methods is not statistically significant. Taking into consideration the proposed scales in the literature the authors have prepared a questionnaire which includes a scale for QOL assessment of oral cavity cancer patients to be used in a future survey on the quality of life of cancer patients in some regions of Bulgaria.     

健康教育对晚癌患者生活质量及生存期研究

摘要:目的　探索健康教育对晚癌患者生活质量（Quality Of Life,QOL）及生存期的影响。方法　回顾性调查2013年8月-2014年2月期间接受华西宁养院家居服务的112例晚期癌症患者,对给予健康教育及躯体症状控制者纳入研究组（56例）,对仅给予躯体症状控制者作为对照组（56例）。分析两组患者基线资料可比性,比较两组患者QOL及生存期的差异。结果　两组间基线资料比较均无统计学差异（P＞0.05）;干预前两组患者间QOL评分比较无统计学差异（t＝0.110,P＝0.913）及QOL评分等级比较无统计学意义（Z＝0.180,P＝0.857）;干预后研究组QOL评分显著高于对照组（t＝5.093,P＜0.001）,研究组干预后较干预前QOL显著升高（t＝5.093,P＜0.001）;干预后研究组较对照组QOL评分等级明显改善（Z＝4.418,P＜0.001）。两组生存曲线整体比较具有统计学意义（χ2＝5.993,P＝0.014）。结论　健康教育能提高晚癌患者的生活质量及延长其生存期。     

Report from a National Cancer Institute (USA) workshop on quality of life assessment in cancer clinical trials

To promote the inclusion of quality of life (QOL) end-points in clinical research on cancer, the National Cancer Institute (USA) sponsored a workshop on QOL assessment in cancer clinical trials in July, 1990. Experts in clinical trials and QOL research formed four working groups to identify current areas of cancer treatment in which QOL end-points are most important; to discuss methodologic problems in QOL assessment; to address common problems in implementing clinical studies with QOL end-points; and to consider statistical issues in design, implementation, and data analysis. Recommendations made by the working groups are summarized in this paper.This article summarizes recommendations from the four working groups that comprised the workshop. Copies of the full reports are available from Dr Nayfield at the address above.     

Putting the Q into quality of life; the identification of subjective constructions of health-related quality of life using Q methodology

Health related quality of life (HRQOL) is presented as a largely subjective construct of increasing importance in health discourse and practice. Key difficulties with the assessment and measurement of quality of life (QOL) are discussed. A Q methodological investigation of subjective constructions of health-related QOL is then reported using importance items derived from studies of the WHOQOL. Eight factors emerged from a factor analysis of the Q sorts of 90 healthy participants, each corresponding to a distinct construction of the meaning and relevance of QOL. The factors are interpreted and discussed under the following headings: 'Happy families, 'Stand on my own two feet', 'Emotional independence', 'Just do it!', 'Life as a positive challenge', 'In God we trust', 'Staying healthy enough to bring home the bacon' and 'You can't choose your family'. This diversity of views has implications for QOL testing.     

Quality of life assessment in women with breast cancer: benefits, acceptability and utilization

In 2006, breast cancer was the third leading cause of death in American women; however, more women survive breast cancer than any other type of cancer. As the disease progresses, it is important to know how one's health-related quality of life (QOL) is affected for those who receive treatment, those who survive, and those who remain disease-free. The purpose of this study was to summarize the benefits, challenges, and barriers of QOL measurement for female breast cancer patients. A PubMed literature search was conducted using the terms "quality of life" and "breast cancer." The search was then refined with terms related to QOL assessment instruments. The research team reviewed over 100 of the 2,090 articles identified.     

Pattern mixture models for longitudinal quality of life studies in advanced stage disease

Analyses of longitudinal quality of life (QOL) for patients with advanced stage disease are frequently plagued by problems of non-random drop-out attributable to deteriorating health and/or death. As an example, Moinpour et al. cite specific challenges which limited their report and assessment of QOL for patients treated for advanced stage colorectal cancer in a clinical trial of several chemotherapeutic regimes performed by the Southwest Oncology Group. A particular source of confusion that arises in studies of advanced stage disease is whether or not to differentiate loss of follow-up due to death from drop-out where the patient is still alive but has dropped from the study. In this paper we examine exploratory data techniques for longitudinal QOL data with non-random missingness due to drop-out and censorship by death. We propose a pattern mixture model for longitudinal QOL, time of drop-out and survival, which allows for straightforward implementation of sensitivity analyses and explicit comparisons to the raw data. Our method is illustrated in the context of analysing the data and addressing the challenges posed by Moinpour et al.     

心理社会干预对肺癌患者生活质量影响的Meta分析

目的 系统评价心理社会干预对肺癌患者生活质量的影响。方法 计算机检索多个中英文数据库,收集关于心理社会干预对肺癌患者生活质量影响的临床随机对照试验,采用RevMan5.3.0和Stata12.0软件进行数据分析。结果 共纳入11项临床随机对照研究。心理社会干预组在干预结束后即刻〔SMD = 0.33, 95%CI (0.16, 0.51), P = 0.0001 〕和3个月以内〔SMD = 0.30, 95%CI (0.01, 0.59), P = 0.04〕的总体生活质量评分优于对照组,而在3个月以后,2组无统计学差异（P＞0.05）。在功能方面,心理社会干预在提高患者的躯体功能〔MD = 0.30, 95%CI (0.16, 0.43), P＜0.0001〕上有显著作用;而在情绪、认知、角色和社会功能方面,2组无统计学差异（P＞0.05）。结论 采用心理社会干预,有利于肺癌患者在干预后短期内（≤3个月）生活质量的改善,尤其是在躯体功能方面,而心理社会干预在3个月以后的效果尚不能确定,有待临床开展大样本、设计严谨的临床随机对照研究进一步证实。     

The value of the PedsQLTM in assessing quality of life in survivors of childhood cancer

AIMS: To determine differences in ratings of quality of life (QOL) depending on respondent (mother or child) and implications for the validity of measures of QOL, and interpretation of scores. METHOD: Forty-five survivors of acute lymphoblastic leukaemia (ALL) and 23 survivors of central nervous system (CNS) tumours and their mothers completed a generic measure of QOL: the Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0; Varni et al., 2001). RESULTS: Although correlations between mother and survivor ratings were largely moderate to good, further analyses showed that mothers reported QOL to be worse than survivors. Both mothers and survivors rated physical health worse than psychological health, and survivors of a CNS tumour had poorer QOL than survivors of ALL. Although survivors of ALL reported reasonably good physical health, their psychosocial health was more adversely affected. CONCLUSIONS: Implications for further use of the PedsQL 4.0 in the clinical or research context are discussed. Incidental findings highlight some limitations of the PedsQL 4.0 for work with this population.     

Quality of life and psychosocial adjustment in gynecologic cancer survivors

Gynecologic malignancies occur in approximately 1 in 20 women in the United States. Until recently, clinical management of these cancers has focused almost exclusively on prolonging the survival of patients. A recent literature search using MEDLINE revealed relatively few research studies that reported data on quality of life (QOL) in a gynecologic cancer population. Reports in the literature have been conflicting, with some studies finding deterioration in QOL and some finding stability or improvement in QOL over time. Until recently, the impact of various treatments (surgery, radiation, chemotherapy) on QOL in this population was unknown. Recently, the QOL of women with gynecologic cancer has been compared to that of women with other types of cancer. Also, risk factors for poor adjustment in gynecologic cancer are beginning to be investigated. This presentation will attempt to 1) summarize the relevant literature on QOL in a gynecologic cancer population, 2) compare QOL in this population to other types of cancer, 3) examine risk factors for poor adjustment and 4) describe the limitations of the literature and future research directions.     

Finding a useful conceptual basis for enhancing the quality of life of nursing home residents

In this article it is depicted that before nursing home staff can effectively contribute to optimising the quality of life (QOL) of nursing home residents, it has to be clear what exactly QOL is and how it can be enhanced. The aim is to identify a QOL framework that provides tools for optimising QOL and can form the basis for the development of guidelines for QOL enhancement. For that purpose, a framework should meet three basic criteria: (1) it should be based on assumptions about comprehensive QOL of human beings in general; (2) it should clearly describe the contribution of each dimension to QOL and identify relationships between the dimensions; (3) it should take individual preferences into account. After the criteria are defined, frameworks identified from a literature search are discussed and evaluated according to these criteria. The most suitable framework appears to be the QOL framework of the theory of Social Production Functions. The implications of this framework in understanding the QOL of nursing home residents are described and recommendations for further research are discussed.     

Optimism and health-related quality of life in adolescents with cancer

Objective   To delineate the relationship between optimism and health-related quality of life (HRQOL) and quality of life (QOL) in adolescents with cancer living in the Bronx, New York.
Methods   Optimism was assessed using the Life Orientation Test, Revised (LOT-R). HRQOL and QOL were measured using the Pediatric Quality of Life Inventory, Cancer Module, Acute Version and The Pediatric Quality of Life Inventory, Generic Core Scale, respectively. Associations between optimism and HRQOL and QOL were assessed using Pearson's product-moment correlations.
Results   Twenty-three adolescents participated in this study; the mean age was 16 and the majority was male. This sample was highly optimistic and reported high HRQOL and QOL. Optimism was correlated with less reported pain and hurt, better communication with doctors, higher reported psychological functioning and higher overall QOL.
Conclusion   Optimism is associated with higher QOL in inner city adolescents with cancer. Further research should assess whether interventions that increase optimism lead to greater QOL in this population.     

Statistical analysis of quality of life data in cancer clinical trials

In clinical trials endpoints other than total and/or disease-free survival are gaining more and more interest. In particular, quality of life (QOL) or the well-being of patients has emerged as a synonym for variables describing the subjective reactions of patients towards their disease and its treatment. The statistical analysis of such QOL data is complicated firstly by the large number of variables measured and their obvious lack of objectivity. The construction of suitable aggregate measures allowing a reduction of the measurements into a (preferably) unidimensional index are discussed in the context of an analysis at a fixed time point during the course of treatment. A second problem arises from the consideration that a patient's well-being is subject to changes over time. We discuss the modelling of QOL by suitable stochastic processes which are extensions of a multistate disease process. This allows QOL events to be incorporated into methods of survival analysis by either estimating the relevant transition probabilities between states or calculating quality-adjusted survival times. Finally, some brief guidelines for the planning of clinical trials including QOL measurements will be proposed.     

Development and validation of the nasopharyngeal cancer scale among the system of quality of life instruments for cancer patients (QLICP-NA V2.0): combined classical test theory and generalizability theory

Quality of Life Research - This research was designed to develop a nasopharyngeal cancer (NPC) scale based on quality of life (QOL) instruments for cancer patients (QLICP-NA). This scale was...     

Joint modeling quality of life and survival using a terminal decline model in palliative care studies

Palliative medicine is a relatively new specialty that focuses on preventing and relieving the suffering of patients facing life‐threatening illness. For cancer patients, clinical trials have been carried out to compare concurrent palliative care with usual cancer care in terms of longitudinal measurements of quality of life (QOL) until death, and overall survival is usually treated as a secondary endpoint. It is known that QOL of patients with advanced cancer decreases as death approaches; however, in previous clinical trials, this association has generally not been taken into account when inferences about the effect of an intervention on QOL or survival have been made. We developed a new joint modeling approach, a terminal decline model, to study the trajectory of repeated measurements and survival in a recently completed palliative care study. This approach takes the association of survival and QOL into account by modeling QOL retrospectively from death. For those patients whose death times are censored, marginal likelihood is used to incorporate them into the analysis. Our approach has two submodels: a piecewise linear random intercept model with serial correlation and measurement error for the retrospective trajectory of QOL and a piecewise exponential model for the survival distribution. Maximum likelihood estimators of the parameters are obtained by maximizing the closed‐form expression of log‐likelihood function. An explicit expression of quality‐adjusted life years can also be derived from our approach. We present a detailed data analysis of our previously reported palliative care randomized clinical trial. Copyright © 2012 John Wiley & Sons, Ltd.     

Different pathways in social support and quality of life between Korean American and Korean breast and gynecological cancer survivors

PURPOSE: The purpose of this study was to investigate: (1) how social support influences quality of life (QOL) and (2) whether or not the pathways for predicting QOL outcomes differ between Korean American and Korean survivors of breast and gynecological cancer. METHOD: To identify multiple dimensions of health status and psychosocial outcomes, two standardized QOL and psychological distress measures were administered to 51 Korean Americans and 110 Koreans. Social support was measured by items assessing functional social support and social network structures. Hierarchical multiple regression and path analyses were employed to investigate the effects of social support on outcomes and to compare between Korean Americans and Koreans. RESULTS: The findings indicate that functional social support directly influences QOL and psychological distress, and social network structures are directly and/or indirectly associated with outcomes. Moreover, the two groups showed different pathways from social support to outcomes. CONCLUSION: This study provides practical research information by illuminating the relationships between social support components influencing QOL for Korean American and Korean survivors. This study may increase the utility and efficacy of the research and interventions to enhance cancer survivors' social participation and to diminish barriers to follow-up care, considering the different living conditions between the United States and Korea.     

Integrating the patient's views into the measurement of quality of life: Examples from the peri- and post-menopausal periods

This paper focuses on patient's views and how they are addressed in current approaches to the measurement of health related quality of life (QOL) during the peri-and post-menopausal periods. Although all QOL questionnaires are meant to be subjective as they ask for self-reported assessments, they do differ in their rationale, particularly the standards against which patient QOL is assessed. These standards can be defined either by the researchers, the doctors, the community or the patients themselves. Approaches to measurement include the assessment of symptoms, physical function, the ability to perform daily activities, the achievement of personal expectations and motivational needs, well-being and utility theory. The contribution that each approach can make to the measurement of quality of life is examined and instruments such as those used during the peri- and post-menopausal periods are given as examples. The different underlying rationales have resulted in instruments that serve different purposes. The rationale therefore should be used as a guide for choosing the most appropriate measure according to whether the information is required to inform decision making by payers, clinicians or individuals. Further research is required to assess interventions for peri- and post-menopausal women in the context of their needs and expectations.     

Does Rurality Affect Quality of Life Following Treatment for Breast Cancer?

Purpose: The present research examined the extent to which rural residence and social support seeking are associated with quality of life (QOL) among breast cancer patients following chemotherapy. Methods: Female breast cancer patients (n = 46) from communities of varying degrees of rurality in a Midwestern state completed psychological and QOL measures at 1-month postchemotherapy. Analyses assessed the relationships between QOL outcomes, rurality, and social support seeking. Findings: Using age and education as covariates, regression analyses were conducted to determine the extent to which QOL was related to social support seeking and rural/urban residence. Analyses revealed that social support seeking was associated with lower scores on multiple indices of QOL, and it was associated with higher self-reported symptoms of depression. Several significant associations with rural/urban residence were noted as well. Specifically, increasing rurality, as defined by USDA Rural-Urban continuum codes, was associated with lower overall QOL, lower functional well-being, and increased complaints of breast cancer specific symptoms. Conclusions: These findings highlight the relevance of continued efforts to address social support needs among women with a history of breast cancer living in rural and urban communities. They also suggest that individuals in more rural communities may be at risk for lowered QOL in the early period following cancer treatment. Future research is needed to replicate these results with larger and more diverse samples of rural and urban dwelling individuals, and to determine whether these effects may be attributed to identifiable characteristics of rural communities (eg, fewer cancer-related resources).     

Reconsidering the psychometrics of quality of life assessment in light of response shift and appraisal

The increasing evidence for response shift phenomena in quality of life (QOL) assessment points to the necessity to reconsider both the measurement model and the application of psychometric analyses. The proposed psychometric model posits that the QOL true score is always contingent upon parameters of the appraisal process. This new model calls into question existing methods for establishing the reliability and validity of QOL assessment tools and suggests several new approaches for describing the psychometric properties of these scales. Recommendations for integrating the assessment of appraisal into QOL research and clinical practice are discussed.     

An instrument to assess mental patients’ capacity to appraise and report subjective quality of life

Quality of life (QOL) is increasingly recognized as an important outcome measure in treatment studies and service evaluation. However, patients or service users may sometimes lack the capacity to either evaluate or express their subjective QOL, for example due to cognitive impairment, communication disorders, symptom distress or burden of completing the assessment itself. This paper describes the development of an instrument, the capacity to report subjective quality of life inventory (CapQOL), which evaluates the ability of patients to appraise their subjective QOL and to complete related measures. The CapQOL is a simple and brief screening tool, designed for use in people with a wide range of mental disabilities. It helps researchers to identify individuals who are unable to appraise or report their subjective quality of life. We administered the CapQOL to 442 patients with early psychosis. About 89% of the participants were assessed to be able to complete a subjective QOL measure. The CapQOL demonstrated satisfactory psychometric properties. Further validation studies in people with psychosis as well as other mental disabilities are indicated.     

General life satisfaction and domain-specific quality of life in chronic schizophrenic patients

Subjective quality of life (QOL) has often been assessed through questionnaires or structured interviews focusing on the person's satisfaction with various life domains. In particular, most QOL instruments for psychiatric patients are based on this concept. We report on a study casting some doubts on the rationale of this approach. We investigated the QOL of 48 chronic schizophrenic outpatients with a long-term disease history (at least 20 years) using a German version of the Lancashire QOL Profile. The interrelations between general life satisfaction, satisfaction with specific life domains, psychological well-being and psychopathology were studied using correlation analysis and multiple linear regression. Of the life domains assessed, only two, namely social relations and health, contributed significantly to the patients' general life satisfaction, while the others (including work, leisure, family relations and housing) did not. The subscales on psychological well-being (self-esteem, affective state) as well as psychopathology were found to be more closely associated with general life satisfaction than almost all life domains considered. The findings are discussed with regard to the specific situation of the group of patients investigated. They give indications that the life domain approach to measuring QOL has its limitations, in particular when applied to patients having adapted to a very restricted everyday life.