Item response models for joint analysis of quality of life and survival.

A complication when assessing quality of life data longitudinally is that in many trials a substantial percentage of patients die before completing all of the assessments. Furthermore, a patient's risk of dying might be predicted by his current quality of life. This suggests jointly modelling quality of life and survival, and using this combined information to summarize the outcome. The aim of this paper is to address the complicated issues, such as death, present in analysing multiple-item ordinal quality of life data in clinical trials while recognizing the psychometric properties of the quality of life instrument being used. This is done by combining an item response model and Cox's proportional hazard model, where a latent variable process for quality of life determines the probability of selecting various options on quality of life items, and also serves as a time-dependent covariate in the survival model. We accomplish this by using Markov chain Monte Carlo methods to obtain parameter estimates. Then we compute a summary measure, area-under-QOL curve, to compare the efficacy of the treatments. The methods are illustrated with analysis of data from the Vesnarinone trial of patients with severe heart failure, in which quality of life was assessed with the Minnesota Living with Heart Failure Questionnaire.     

Health-related quality of life measures for women with urinary incontinence: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory

Urinary incontinence (UI) is a relatively common condition in middle-aged and older women. Traditional measures of symptoms do not adequately capture the impact that UI has on individuals' lives. Further, severe morbidity and mortality are not associated with this condition. Rather, Ul's impact is primarily on the health status and health-related quality of life (HRQOL) of women. Generic measures of HRQOL inadequately address the impact of the condition on the day-to-day lives of women with UI. The current paper presents data on two new condition-specific instruments designed to assess the HRQOL of UI in women: the Urogenital Distress Inventory (UDI) and the Incontinence Impact Questionaire (IIQ). Used in conjunction with one another, these two measures provide detailed information on how UI affects the lives of women. The measures provide data on the more traditional view of HRQOL by assessing the impact of UI on various activities, roles and emotional states (IIQ), as well as data on the less traditional but critical issue of the degree to which symptoms associated with UI are troubling to women (UDI). Data on the reliability, validity and sensitivity to change of these measures demonstrate that they are psychometrically strong. Further, they have been developed for simple, self-administration.The Continence Program for Women (CPW) Research Group is comprised of: Richard C. Bump, MD (1990–1993), Denise P. Elser, MD, J. Andrew Fantl MD, Donna K. McClish, PhD, and Jean F. Wyman, PhD, Schools of Medicine and Nursing, Virginia Commonwealth University/Medical College of Virginia, Richmond, VA; Richard C. Bump MD (1993-present) and James P. Theofrastous, MD, School of Medicine, Duke University, Durham, NC; and Curt D. Furberg, MD, PhD, Samuel S. Lentz, MD, Timothy M. Morgan, PhD, Deirdre Robinson, MD, and Sally A. Shumaker, PhD, The Bowman Gray School of Medicine of the Wake Forest University, Winston-Salem, North Carolina, USA.     

Systematic Review of Cost-Utility Analyses That Have Included Carer and Family Member Health-Related Quality of Life

ObjectivesHealth interventions for patients can also affect the health of their informal carers and family members. These changes in carer or family member health could be reflected in cost-utility analyses (CUAs) through the inclusion of their quality-adjusted life-years (QALYs). We conducted a systematic review to identify and describe all CUAs that have included family member health-related QALYs.MethodsA total of 4 bibliographic databases were searched from inception to July 2021. A 2-stage sifting process for inclusion of studies was undertaken. We performed data extraction using a standardized data extraction form and performed a narrative synthesis of the evidence.ResultsA total of 40 CUAs published between 1999 and 2021 were identified. CUAs were conducted in 15 different countries. CUAs examined 13 different conditions including 15 CUAs on vaccination, 5 on Alzheimer’s disease, 2 on Parkinson’s disease, 3 on dementia, and 2 on terminal illness. The EQ-5D was the most commonly used measure of family member health. Generally, including carer QALYs resulted in lower incremental cost-effectiveness ratios.ConclusionsWhen considering the total number of economic evaluations published, few have included family member QALYs and the methods for doing so are often inconsistent and data sources often limited. Estimation of family member QALYs in patient CUAs was regularly uncertain and often substantial in magnitude. The findings highlight the variation among methods and call for greater consistency in methods for incorporating family member QALYs in patient CUAs.     

Self-perceived quality of life of children and adolescents with physical disabilities in Hong Kong

Although illnesses and diseases are thought to adversely affect quality of life (QoL), whether children who have physical disabilities (PD) from a young age adapt to the effect of developmental disabilities has rarely been investigated. This study attempted to assess the subjective wellbeing, and examine the correlation between objective and subjective QoL, of children with PD. Using a self-reported non-disease-specific questionnaire, the QoL of 72 young persons (13.5 ± 2.0 years) with PD was contrasted with those who do not have disabilities (n=510; age-matched). MANOVA analyses revealed that the PD group had lower objective QoL score (63.0 ± 7.4 vs. 66.8 ± 5.7, p > 0.001) but the two groups were not significantly different in subjective QoL score (70.9 ± 11.4 vs. 69.6 ± 13.6, p=0.466). No correlation was found between objective and subjective QoL in the PD group (r ranged from 0.06 to 0.19), while weak to medium correlations (r ranged from 0.03 to 0.41) were observed for the controls. The apparent detachment of subjective feeling and objective circumstances in the PD group may reflect adjustment to developmental disabilities.     

Parents’ perception of the quality of life of preschool children at risk or having developmental disabilities

Despite increased concern for the health related quality of life (HRQOL) of people with disabilities, little is known about the HRQOL of children with developmental disabilities. The present study aimed to explore the HRQOL of children who were at risk or having developmental disabilities in Hong Kong. Using the parent-reported Chinese Pediatric Quality of Life Inventory (PedsQL), the HRQOL of 173 children (2–4 years) with signs of delays in development was contrasted with that of 132 children with typical development. We found that those who exhibited high risk of developing a developmental disability had significantly lower overall well-being (76.3 ± 13.7 vs. 84.2 ± 11.3; p<0.001) and psychosocial health (71.3 ± 15.6 vs. 82.5 ± 12.9; p<0.001) but not necessarily physical health. The findings are consistent with previous findings in children with different disabilities and chronic illnesses. They suggest children at risk or having DDs need help in restoring their quality of life up to the standard experienced by their healthy peers, particular in psychosocial aspects such as social functioning, emotion functioning, and school functioning.     

深圳市罗湖区社区高血压病人生命质量及影响因素

目的　了解深圳市罗湖区社区高血压管理病人生命质量状况 ,并分析其影响因素。方法　采用整群随机抽样 ,抽取罗湖区 10个社区健康服务中心 4 90名高血压病人 ,采取SF 36量表评价高血压病人的生命质量 ,并分析其影响因素。结果　高血压病人QOL值分别为生理功能82 .9± 2 2 .4 ,生理角色为 73.2± 32 .5 ,肌体疼痛 6 6 .2± 2 7.7,总健康 5 5 .6± 2 3.3,生命力 5 9.2±2 3.1,社会功能 80 .1± 2 2 .3,情感角色 73.2± 35 .2 ,心理健康 74 .8± 17.5。相对而言 ,接受管理时间长、男性、收入高、病程短的病人QOL高。结论　社区高血压综合防制能有效地提高患者生命质量。     

Quality of life of alcoholics and non-alcoholics: does excessive drinking make a difference in the urban setting?

The current study assessed whether perceived quality of life differed between alcoholics and non-alcoholics. Patients attending an urban-based hospital were screened for alcoholism using the CAGE questionnaire. Patients were recruited from an out-patient clinic setting as well as from an in-patient substance abuse unit. Quality of life scores were based on Chubon's (1987) Life Situation Survey. Results indicated that alcoholics experience a lower quality of life than their non-alcoholic counterparts regardless of setting; however, all patients reported experiencing poor life quality. The impact of alcoholism treatment programmes on patients already experiencing low quality of life is questioned.Study supported by NIAAA-R01-AA08278     

Health-related quality of life (HRQoL) in patients with cancer and other concurrent illnesses

This study analyzed the impact of eight common chronic medical conditions on cancer patients' health-related quality of life (HRQoL) as measured by the functional living index-cancer (FLIC). The FLIC was administered to a population of 405 people in 14 communities in the North Central US within 4-8 weeks of diagnosis with breast or colorectal cancer. At that time, patients also self-reported any other health conditions for which they had been receiving medical treatment. The impact of the selected chronic conditions on the FLIC scores was analyzed using Student's t-tests and linear multiple regression. In the bivariate analysis, patients with heart/circulation problems had lower FLIC total scores (p < 0.05), physical well-being subscale scores (p < 0.05), and nausea subscale scores (p < 0.01). Patients with diabetes had lower nausea subscale scores (p < 0.05). The social well-being subscale score was higher with the report of arthritis/joint problems (p = 0.001). In multivariate analysis adjusted for age, arthritis/joint problems were predictive of the social well-being (p < 0.01) and hardship due to cancer (p < 0.05) subscale scores; heart/circulation problems (p < 0.001) and diabetes were predictive of the nausea subscale scores. ECOG performance status was significant predictor for the FLIC total and all of the subscale scores. HRQoL as measured with the FLIC scores in patients with cancer is impacted by the presence of other concurrent health conditions; this finding has implications for HRQoL theory and application.     

中年知识分子生命质量与生活满意度的关系

目的 研究中年知识分子生命质量与生活满意度之间的关系。方法 对463例40～59岁的大专院校和医院职工进行问卷调查和体能检查，对所得资料进行因子分析和典型相关分析。结果 中年人群生命质量与生活满意度之间呈正相关关系(典型相关系数r=0．6748)；而生活满意度主要由人际关系、家庭生活、医疗保健和身体健康来体现。结论 提高生活满意度是体现中年知识分子生命质量的关键。     

Assessing quality of life in eating disorder patients

Objective: To examine quality of life among subgroups of eating disorder patients. Method: Self-report questionnaires which included two quality of life measures were completed by 87 individuals referred for treatment to the Australian Capital Territory Eating Disorders Day Program. Health-related quality of life, as measured by the Medical Outcomes Study 12-item Short Form Mental Component Summary scale, and subjective quality of life, as measured by subscales of the World Health Organization Brief Quality of Life Assessment Scale (WHOQOL-BREF), were compared among individuals who received the diagnosis of anorexia nervosa purging subtype (n=15), anorexia nervosa restricting subtype (n=19), bulimia nervosa (n=40) and binge eating disorder (n=10), and among a general population sample of young adult women employed as a control group (n=495). Results: Eating disorder patients, when considered together, showed marked impairment in both health-related and subjective quality of life relative to normal control subjects. However, in both domains, restricting anorexia nervosa patients reported significantly better quality of life than other patient groups, after controlling for levels of general psychological distress. Scores on the Social Relationships subscale of the WHOQOL-BREF among individuals in this subgroup were similar to those of normal control subjects. Conclusions: Reliance on any one instrument is likely to be misleading in assessing the quality of life of eating disorder patients. Careful consideration needs to be given to the assessment of restricting anorexia nervosa patients in particular.     

Subjective quality of life in patients with chronic fatigue syndrome

The aim of this study was to (1) assess Subjective Quality of Life (SQOL) of patients with Chronic Fatigue Syndrome (CFS) using a generic concept and to compare the findings with those in groups with mental disorders and healthy subjects, and (2) investigate whether and, if so, to what extent socio-demographic and clinical variables predict SQOL in CFS patients. Seventy-three patients diagnosed with CFS were randomly selected and interviewed from two specialised clinics. CFS was diagnosed using the Oxford Criteria. SQOL was assessed on the Manchester Short Assessment of Quality of Life (MANSA) and Health-Related Quality of Life (HRQOL) on the Medical Outcome Study Short-Form 36 (MOS) SF-36. A battery of mood and symptom questionnaires, including the Symptom Checklist Questionnaire (SCL-90-R), was administered to assess various aspects of symptomatology as potential predictor variables. Multiple regression analyses were conducted to identify predictors of SQOL. Overall, SQOL was low in CFS patients and less favourable than in groups with mental disorders and healthy subjects. Satisfaction was particularly low with life as a whole, leisure activities and financial situation. Whilst SQOL was only moderately correlated with HRQOL, the SCL-90-R score, especially SCL-90-R Depression scale score, was the best predictor of SQOL explaining 35% of the variance. HRQOL and generic SQOL appear distinct despite some overlap. The findings underline that SQOL is significantly disrupted in CFS patients. Depressive symptoms are statistically the strongest ‘predictor’ of SQOL, although the direction of the relationship is not established. These data suggest that treatment of depression associated with CFS, regardless of causation, could help to improve SQOL in CFS patients.     

河南农村老年人期望寿命研究

通过对唐河县６０岁以上农村老年人的调查，借鉴国外老年人功能测量和健康期望寿命研究方法，以日常生活活动（ＡＤＬ）丧失为期望寿命的判定终点，计算了河南农村６０岁以上老年人的健康期望寿命，探讨了健康期望寿命指标及其研究方法应用于农村老年功能健康和生命质量评价的可行性。结果显示，６０～６４岁组老年人群的平均预期寿命为１６．７岁，其中男性为１４．８岁，女性为１９．３岁。健康期望寿命为１４．９岁，男性为１３．５岁，女性为１６．８岁。女性各年龄组的平均期望寿命均高于男性，但各年龄组女性期望寿命占平均余寿的比例却明显低于男性     

Concomitants of menopause-specific quality of life in premenopausal and post-menopausal women living in South Korea

ABSTRACT

The present study investigated the concomitants of menopause-specific quality of life among premenopausal and postmenopausal women. Based on the Wilson and Cleary model of quality of life, this cross-sectional study recruited 329 women of age 40–65 years following operational convenience. The study was conducted in the office of the Korea Population, Health and Welfare Association (KPHWA) in Incheon, South Korea. Data collected on sociodemographic characteristics, social support, biological/physiological characteristics, the Pittsburgh Sleep Quality Index (PSQI-K), and self-rated health. Menopause-specific quality of life questionnaire (MENQOL) was used in this study. Hierarchical multiple linear regression analysis was performed. The study found that social support and self-rated health were negatively correlated with MENQOL in premenopausal women, while the income level and self-rated health were negatively associated with MENQOL in postmenopausal women. Sleep quality was positively correlated with MENQOL in both premenopausal and postmenopausal women. The study results indicate the need for tailored approaches based on menopausal status. Especially, social support may help improve the MENQOL of premenopausal women, while in postmenopausal women, improved sleep quality may enhance their menopause-specific quality of life.     

The Nottingham Health Profile as a measure of quality of life in zoster patients: convergent and discriminant validity

The main symptoms of zoster, a disease caused by the reactivation of the varicella zoster virus (that causes chicken-pox) are: rash, associated with pain, burning, or itching, and pain that outlasts the rash sometimes by months or years. The uncomfortable and long-lasting symptoms of herpes zoster are likely to compromise the patient's quality of life. However, the impact of zoster on health-related quality of life has not previously been measured directly. Recent papers have demonstrated the ability of generic measures to discriminate among patients with different clinical symptoms. In this paper, we demonstrate the convergent validity for zoster of a generic measure, the Nottingham Health Profile (NHP), by measuring its correlation with rash progression, pain levels, and pain medications. The discriminant validity of the NHP was demonstrated by its ability to distinguish between different levels of pain severity. The NHP dimensions most highly correlated with the pain measures, were pain (0.42–0.50), energy (0.34–0.38) and sleep (0.32–0.38). The NHP scores in all six dimensions show large differences at different levels of pain severity that are statistically significant. These results demonstrate the NHP's validity as a measure of health-related quality of life in zoster patients.     

生存质量量表信度和效度的初步评价

按QWB量表修订框架,结合多种生理、心理、社会适应量表,精选26个问题条目重新编制NWS量表(NewWell-BeingScale)。经对福州市359例老年人生存质量的标准化研究,考核评价NWS量表的信度和效度。结果表明:该量表具备良好的信度,Cronbachα值高达0.8345;采用确定决断分值的内容效度考核,其误判比例＜30％;采用疾病等级为效标的实证效度考核,量表对疾病状态具有良好的甄别力;采用因子分析的结构效度考核,各问题条目可进行合理的归因与解释。NWS量表的信、效度均优于QWB量表,推荐使用。     

The Quality of Life of Older Adults with Urinary Incontinence: Determining Generic and Condition-Specific Predictors

Urinary incontinence (UI) is an unpleasant problem for many adults. This study determined the importance of demographic, health and incontinence variables for the generic and incontinence-specific quality of life (QoL) of older adults (age ≥ 60 years). Telephone surveys of adults reporting at least weekly episodes of UI (n = 435) were conducted as part of a randomized, controlled trial. Logistic regression analyses showed that the predictors of generic and incontinence-specific QoL differed. Life satisfaction, a generic outcome, was predicted by education, the number of days in bed due to health problems, the number of days not feeling well and the amount of urine lost. Generic health was related to education, the number of days sick in the previous 30 days and the number of days health issues restricted activities. The incontinence-specific QoL outcomes were predicted by age, mobility difficulties, the amount of urine lost, the frequency of UI, and the number of daytime and night-time voids. The specific QoL measures provide a different profile of those most affected in this sample than that obtained by the generic measures. The most affected are younger persons with severe urine loss. Older persons may have other conditions impinging on QoL and may have adapted behaviourally and psychologically to urine loss. This revised version was published online in June 2006 with corrections to the Cover Date.     

影响老年军人生活质量的相关因素研究

目的 探讨影响驻西安地区军队老年人群生活质量的相关因素。方法 采用M0ssF一36量表的中文版对西安地区军队934名老干部进行生活质量测量。结果 西安地区军队老年人的生活质量与年龄、家人对自己关心程度、健康自评、看病自付费用和对自己所患疾病治疗效果的评价呈显著相关，而与他们的性别、人均收入、原职称、子女同住情况和学历均无显著相关。结论 军队干休所医痘卫生工作的重点不仅要放在医疗保健，而且也要注重老年人的心理卫生保健，才能全面地提高老年军人的生活质量。     

The distinction between affect and cognition in the quality of life of cancer patients—sensitivity and stability

The distinction between affect and cognition has been put forward to clarify the lack of differences found in studies describing quality of life under deteriorated circumstances, such as serious iliness. In the study reported here, cancer patients under treatment (n=201) were compared with a random sampie from the normal population (n=200). As hypothesized, the affective component of life quality turned out to be more severely impaired than the cognitive component. Besides, it was investigated which factors contribute to the affective and the cognitive component of the quality of life of cancer patients under treatment. In cancer patients affect proved more strongly related to the physical domain. Cognition on the other hand was more strongly related to coping resources, especially personality characteristics like the level of self-esteem. It is concluded that an affective measure of quality of life is more sensitive to change in patients. The stability of life quality is attributed to the rather strong relation the affective and the cognitive component both have to coping resources.     

Measuring quality of life in hospice patients using a newly developed Hospice Quality of Life Index

The purpose of this study was to evaluate the validity and reliability of the newly developed Hospice Quality of Life Index (HQLI). Sixty-eight patient/caregiver dyads from one hospice were asked to fill out the HQLI on admission and after 3 weeks of hospice care. Hospice experts evaluated the items on the tool to assess content validity. The content validity index (0.83) and the alpha coefficients (r=0.87 and 0.83) supported the validity and reliability of the HQLI. Item analysis revealed items with which patients were most satisfied and aspects of quality of life that were considered to be most important.