Patient centred assessment of quality of life for patients with four common conditions.

OBJECTIVES: To assess the reliability, validity, and responsiveness of a new quality of life measure, the patient generated index (PGI) of quality of life, in patients with four common clinical conditions. DESIGN: Prospective one year follow up study. SETTING: Outpatient departments and four general practices in Grampian, Scotland. SUBJECTS: 1746 patients consulting a general practitioner in one of four practices, or referred to outpatients from all Grampian practices over a four month period, with low back pain, menorrhagia, suspected peptic ulcer, and varicose veins. MAIN OUTCOME MEASURES: Postal questionnaire including the PGI, SF-36 health survey, and clinically derived condition specific measures of disease severity. RESULTS: Test-retest reliability was satisfactory for group comparisons (intraclass correlation coefficient 0.65). Validity was confirmed by the observed association of the PGI with the SF-36, condition specific instruments, and sociodemographic variables. For low back pain, the PGI and the SF-36 pain scale were found to be most responsive to clinical change. For patients with menorrhagia and suspected peptic ulcer, only the condition specific instruments detected larger changes than the PGI. CONCLUSIONS: It is possible to develop a patient generated index of quality of life that not only assesses the extent to which patients' expectations are matched by reality but also satisfies criteria of reliability and responsiveness to change. Further work is required to make the PGI more acceptable and meaningful to patients, but it is believed that it offers an exciting new approach to the evaluation of medical care.     

The welfare state as a determinant of women's health: support for women's quality of life in Canada and four comparison nations

The case is made that characteristics associated with the advanced welfare state in industrialised nations are primary contributors to women's quality of life. This is so since women's health and well-being are particularly sensitive to decisions made in relation to the spending priorities of governments, the extent to which services are provided, and the degree to which women are supported in moves towards equity. Data from the Organization for Economic Cooperation and Development, United Nations Human Development Program, and other sources are used to examine these influences upon quality of life of women in Canada as compared to that of women in Denmark, Sweden, the UK and the US. A consistent pattern was seen by which national features impacting on women's quality of life are more likely to be seen in nations with a social welfare orientation as compared to nations with market approaches to policy development.     

The Q-TWiST approach to assessing health-related quality of life in epilepsy

We propose to develop a methodology for evaluating clinical interventions for epilepsy in terms of their effects on disease-related outcomes, social cost and quality of life, while incorporating patient preference. The technique represents an extension of the quality-adjusted time without symptoms and toxicities (Q-TWiST) method, which has been previously used to evaluate treatments for cancer and AIDS with respect to their costs in terms of toxicities, and benefits in terms of improved progression-free and overall survival. The extensions we propose to develop allow additional dimensions of quality of life relevant to epilepsy to be included in the analysis. We demonstrate a possible application of the proposed Q-TWiST method with a hypothetical example comparing surgeryvs antiepileptic medication management alone for seizure control. The trade-offs between these alternative treatments are highlighted, along with patient importance weightings regarding various dimensions of quality of life. We describe further research needed to develop the methodology fully and comment on its potential usefulness.     

A sociodental approach to assessing children's oral health needs: integrating an oral health-related quality of life (OHRQoL) measure into oral health service planning

OBJECTIVE: We adopted a sociodental approach to assess the real dental needs of Thai primary school children, and integrated an oral health-related quality of life measure (OHRQoL) into oral health service planning. We then compared the results of this sociodental assessment with standard estimates of a child's oral health needs. METHODS: We developed a new model of sociodental needs assessment and used it to assess the level of impact that various oral health conditions have on the everyday lives of school children. We then carried out a cross-sectional study of all grade-6 children (11-12 years old) in Suphan-buri Province, Thailand. We examined the sample (n = 1034) to assess the children's oral health and then we interviewed each child individually to assess what impact any dental conditions he or she may have on their quality of life. This assessment was done using an OHRQoL indicator, the Child Oral Impacts on Daily Performances index (child-OIDP). We integrated the results obtained using this indicator with those estimates obtained using more traditional, standard clinical methods, in order to generate a clearer picture of exactly which non-progressive dental conditions really needed treatment. These results take into account the impact those conditions have on the overall well-being of children and their ability to function normally and unimpeded. We were then able to prioritize their dental needs according to the severity of disruption caused in their daily lives. FINDINGS: Using standard or "normative" estimates of dental health care needs, the children's need was 98.8%. This level of need decreased signifi cantly to 39.5% when adopting the sociodental approach (P <0.001). Overall, per 100 children with a standard or normative need for dental treatment, only 40 had a sociodental need for treatment when taking into account the impact their condition has on their everyday lives. Children thus identifi ed as requiring treatment were further categorized according to the severity of impact their condition had: 7.2% had severe, 10.3% moderate and 22.0% had minor impacts on OHRQoL. CONCLUSIONS: There was a marked difference between the standard normative and the sociodental needs assessment approach, with the latter approach showing a 60% lower assessment of dental health care needs in Thai 11-12-year-old children. Different levels of "impacts" on daily life can be used to prioritize children with needs.     

Personal quality improvement and individualized health process control: an update

Chronic disease management is about personal quality improvement. This involves tracking personal health measures over time to develop the patient's understanding of common and special cause variation. This can be done through the use of run, control, and time between charts. This review gives examples of different methods taken from the literature.     

Twelve years–experience with the Patient Generated Index (PGI) of quality of life: a graded structured review

The Patient Generated Index (PGI) is an individualised quality of life (QoL) measure that has been in use since 1994. Various adaptations have been made to suit a variety of client groups. The PGI’s psychometric properties have been studied but their review is necessary to inform instrument choice. This article provides a structured review, using grading criteria adapted from those developed to aid outcome measure selection for use with older people. These criteria grade quality of evidence and strength of findings for psychometric validity, providing a useful model for future reviews. All published articles providing data addressing validity, reliability and/or responsiveness were included in the review. Eighteen relevant articles were identified and analysed using the grading criteria. Variable results and quality of investigation were seen. Generally the measure was found to be adequately reliable for group comparisons. The PGI appeared valid but evidence for responsiveness was unclear. Those versions of the measure using fewer points in their Likert scales may have higher reliability. Cognitions involved in QoL judgements remain little understood and investigations of psychometric properties may be enhanced by examination of appraisal processes. Electronic Supplementary Material The online version of this article (doi> contains supplementary material, which is available to authorized users.     

Relationships between self-reported health related quality of life and measures of standardized exercise capacity and metabolic efficiency in a middle-aged and aged healthy population

Background: The purpose of this study was to evaluate to what extent self-reported health related quality of life (HRQL), assessed by the Swedish standard version of the Medical Outcome Study Short-Form 36 (SF-36), is related to measured exercise capacity and metabolic efficiency in a cohort of healthy subjects from the Gothenburg area of Sweden. Material and methods: Individuals were invited to take part in the evaluation where HRQL was compared with the maximal power output expressed in Watts assessed during a standardized treadmill test with incremental work loads. Whole body respiratory gas exchanges (CO₂/O₂) were simultaneously measured. Estimate of metabolic efficiency was derived from oxygen uptake per Watt produced (ml O₂/min/W) near maximal work. Results: The health status profile in the current population largely agreed with normative data from an age- and gender-matched reference group, although some measured scores were slightly better than reference scores. Males and females had a similar relationship between energy cost (ml O₂/min) for production of maximal work (W), while the regressions for maximal exercise power and age were significantly different between males and females (p < 0.01). The overall metabolic efficiency was the same in individuals between 40 and 74 years of age (10.4 ± 0.07 ml O₂/min/Watt). Maximal exercise power was only related to the SF-36 subscale physical functioning (PF), but unrelated to other physical subscales such as role limitations due to physical problems, good general health and vitality. There was also a discrepancy between measured maximal power and PF in many subjects, particularly in males who experienced either intact or severely reduced PF. Conclusions: Our results demonstrate that simultaneous measurements of self-reported and objective measures of PF should add a more integrated view for evaluation of therapeutic effectiveness, since the overall correlation was poor between objective and subjective scores among individuals.     

A comparison of SF-36 summary measures of physical and mental health for women across the life course

Background

Physical and mental component summary scores (PCS and MCS, respectively) are often used to summarise SF-36 quality of life subscales. This paper investigates PCS and MCS across the life course and compares the trajectories obtained from two different methods of calculation.

Methods

The Australian Longitudinal Study on Women’s Health is a population-based study with three cohorts of women and SF-36 surveys taken at multiple time points. Scoring coefficients for each component score were determined using factor analysis with uncorrelated (orthogonal) and correlated (oblique) rotation at the baseline survey, which were then used to compute correlated and uncorrelated PCS and MCS scores at each survey (scaled to have mean of 50 and standard deviation of 10 at baseline).

Results

For both methods, PCS declined progressively across the lifespan, while MCS rose in young and mid-age women to a peak and subsequently declined in later life. Differences were apparent between correlated and uncorrelated scores, most notably for MCS in the older cohort, where correlated MCS reached 54.6 but still less than uncorrelated MCS, with a random effects model indicating 1.63 (95 % confidence intervals 1.58–1.67) units difference; it then declined to a score of 51.2 by the last survey and the difference widened to 3.44 (3.38–3.50) units compared with the uncorrelated MCS.

Conclusions

PCS and MCS have distinct trajectories through life, with differences in results from correlated and uncorrelated component summary scores. The divergence is most notable with MCS, especially for older women, suggesting that correlated MCS and PCS should be used when examining change in health over time in this age group.     

Disability and multidimensional quality of life: A capability approach to health status assessment

This paper offers an approach to assessing quality of life, based on Sen's (1985) theory, which it uses to understand loss in quality of life due to mobility impairment. Specifically, it provides a novel theoretical analysis that is able to account for the possibility that some functionings may increase when a person's capabilities decrease, if substitution effects are large enough. We then develop new data consistent with our theoretical framework that permits comparison of quality of life between those with a disability (mobility impairment) and those without. Empirical results show that mobility impairment has widespread rather than concentrated impacts on capabilities and is associated with high psychological costs. We also find evidence that a small number of functionings are higher for those with a disability, as our theory allows. The paper concludes by discussing possible implications for policy and health assessment methods.     

A gap approach to exploring quality of life in mental health

Improving quality of life (QoL) is an important treatment outcome for the serious mentally ill. There is, however, a need for an instrument which both captures consumers own assessments and gives direct information for intervention. A useful approach is to define QoL as the gap between actual and ideal life circumstances, which is weighted by importance. In this paper we detail how we developed and evaluated a QoL instrument which follows this model. This instrument, the (QoL-GAP), is based on self-appraised items within various life domains. For each item respondents firstly identify what they have (actual) and then what they would like (ideal). They then rate the item for its importance and make any comments. A weighted gap score for each item is subsequently derived from the ideal–actual gap being weighted by the importance rating. This weighted gap score is then related to domain satisfaction ratings, while their average from each domain is related to overall satisfaction and well-being. We surveyed 120 individuals with a serious and enduring mental illness living in different types of residences, such as psychiatric hospitals, hostels, or their own homes, in a largely urban part of Queensland. Sixty-eight percent were males, and 92% had schizophrenia or related disorders. We found that our approach demonstrated good psychometric properties, and that the model-based predictions were borne out: weighted gap measures were consistently more strongly related to domain satisfaction than were the actual circumstances alone. While further work is being undertaken – in such matters as short-forms and further evaluation of the QoL-GAP in a longitudinal study – our results suggest that this (gap) approach helps consumers state their own goals and give their opinions – and so is particularly relevant for consumer-focused mental health delivery and research. This revised version was published online in June 2006 with corrections to the Cover Date.     

Ordinal and cardinal measures of health inequality: an empirical comparison

When measuring health inequality using ordinal data, analysts typically must choose between indices specifically based upon ordinal data and more standard indices using ordinal data, which has been transformed into cardinal data. This paper compares inequality rankings across a number of different approaches and finds considerable sensitivity to the choice between ordinal‐ and cardinal‐based indices. There is relatively little sensitivity to the ethical choices made by the analyst in terms of the weight attached to different parts of the distribution. Copyright © 2009 John Wiley & Sons, Ltd.     

Distinguishing between quality of life and health status in quality of life research: A meta-analysis

Despite the increasing acceptance of quality of life (QOL) as a critical endpoint in medical research, there is little consensus regarding the definition of this construct or how it differs from perceived health status. The objective of this analysis was to understand how patients make determinations of QOL and whether QOL can be differentiated from health status. We conducted a meta-analysis of the relationships among two constructs (QOL and perceived health status) and three functioning domains (mental, physical, and social functioning) in 12 chronic disease studies. Instruments used in these studies included the RAND-36, MOS SF-20, EORTC QLQ-30, MILQ and MQOL-HIV. A single, synthesized correlation matrix combining the data from all 12 studies was estimated by generalized least squares. The synthesized matrix was then used to estimate structural equation models. The meta-analysis results indicate that, from the perspective of patients, QOL and health status are distinct constructs. When rating QOL, patients give greater emphasis to mental health than to physical functioning. This pattern is reversed for appraisals of health status, for which physical functioning is more important than mental health. Social functioning did not have a major impact on either construct. We conclude that quality of life and health status are distinct constructs, and that the two terms should not be used interchangeably. Many prominent health status instruments, including utility-based questionnaires and health perception indexes, may be inappropriate for measuring QOL. Evaluations of the effectiveness of medical treatment may differ depending on whether QOL or health status is the study outcome.     

Prediction of survival: a comparison between two subjective health measures in an elderly population

A large amount of evidence shows that the subjective evaluation of health is a predictor of survival in many different populations. Subjective health (SH) is measured using different types of measures such as a general evaluation of health or a comparative evaluation of health. The aim of this study was to compare the prediction of survival by two measures of SH (a general measure and an age-related measure) and evaluate the association with other variables in an elderly population. The baseline survey was conducted during 1994, covering 1138 men and women aged over 70. The survival status was ascertained 7 years later. After adjustment for age, sex, education, marital status, perceived socioeconomic status and presence of diseases the two SH measures were found to be predictors of mortality, but only in men. In men, there was no significant difference between the two types of SH measures in their prediction of mortality. Also in men, when there was only one or no disease, being married had a protective effect compared with not being married when both types of SH measures were used. In elderly women, the association between the two types of SH and survival diminished after adjusting for the various variables. However, the general SH measure may be the preferable measure to use when needed. Education in women was associated with mortality only via the age-related SH measure.     

中国四地城乡居民生命质量的比较分析

目的:应用中国大样本人群调查的EQ-5D量表,对中国城乡居民的生命质量进行多维测量与比较分析。方法:按年龄和性别配额进行抽样,对沈阳、北京、成都和南京睦个地区的城乡居民进行生命质量相关问卷的入户调查。使用基于中国人群偏好的效用值积分体系,将测量的健康结果转换成健康效用值,对不同类别居民的健康效用值、EQ-5D量表及其天花板效应进行系统分析。结果:描述统计显示,样本地居民的健康效用均值为0.951,区间为[0.364,1];其中,城市居民和农村居民的健康效用均值分别为0.955和0.948。在全样本中,城乡居民分别有20.0%和12.7%的人具有不同程度的疼痛或不舒服和焦虑或抑郁问题。在16岁~34岁亚组人群中,最主要的健康问题是焦虑或抑郁,35岁及以上的人群逐渐面临疼痛或不舒服的健康问题。进一步的计量模型分析显示,在控制其他影响因素后,农村居民比城市居民处于完全健康的概率高5.4个百分点,农村居民在疼痛或不舒服和焦虑或抑郁两个维度处于健康的概率也高于城市居民,但在行动、自我照顾和日常生活3个维度上,农村居民的健康概率低于城市居民。结论:样本地城乡居民的健康效用均值相近,但农村居民在疼痛或不舒服、焦虑或抑郁维度处于优势,城市居民在行动、自我照顾和日常生活维度处于优势。     

Reproductive health awareness: an integrated approach to obtaining a high quality of health

The Georgetown University Institute for Reproductive Health has evolved a multi-dimensional approach to reproductive health education which has grown from their work in natural family planning and fertility awareness. This cohesive approach offers help to community, educational, and health organizations in providing knowledge and skills development in body/self-care, gender awareness, sexuality, and interpersonal communications.     

Expecting a good quality of life in health: assessing people with diverse diseases and conditions using the WHOQOL‐BREF

Background and objectives Fulfilling patient expectations is central to defining a good quality of life (QoL) in health. The WHOQOL‐BREF was developed using novel, person‐centred methods and is a generic patient‐reported outcomes measure (PROM). However, without robust psychometric performance, PROMs cannot be relied upon to assess individuals. This study investigated the WHOQOL‐BREF (UK), with this use in mind. Design Cross sectional with nested repeated measures. Setting and participants Twenty‐seven disease groups or health conditions and healthy people were recruited at 38 UK sites, in a wide range of settings (n = 4628). Interventions ‘Treatment as usual’; new and alternative interventions. Outcome measures WHOQOL‐BREF (UK); SF‐36. Results Respondent burden was low, as acceptability and feasibility were high. Internal consistency was excellent (0.92) and test–retest reliability good. Distinctive QoL profiles were found for diverse conditions. Musculoskeletal, psychiatric and cardiovascular patients reported the poorest QoL and also improved most during treatment. Overall, QoL was good, and best for healthy groups, supporting discriminant validity. Compared with the SF‐36, WHOQOL physical and psychological domains showed good concurrent validity, although social was weak. Small or moderate effect sizes confirmed responsiveness to change in specified domains for certain conditions and interventions. Age had a small impact on reporting QoL. Discussion and conclusion The WHOQOL‐BREF is found to be a high quality patient‐centred generic tool suited to individual assessment in clinics, for research, and audit.     

Common tongue conditions affect quality of life: an issue to be recognized

Introduction

There is an increasing recognition that oral disorders might cause significant impact on life of patients. To date, there has been less focus on oral health?Crelated quality of life (OHR-QoL) measures in outpatient clinics for oral diseases.

Aim

This study was carried out to test the assumption that patients with common tongue conditions would report a worse OHR-QoL than controls.

Method

A total of 59 oral subjects with various tongue conditions and 44 controls were enrolled in this prospective study. Demographic, clinic, and laboratory findings of oral subjects were recorded, and an OHR-QoL questionnaire, named 14-item oral health impact profile (OHIP-14), was completed by oral subjects and controls at the outpatient clinics of four centers.

Results

Median of OHIP-14 total scores of the oral subjects with common tongue conditions was 11 and that of controls was 4 (P?=?0.00) indicating that OHR-QoL was worse in oral subjects than in controls. Most (n?=?39, 66%) of the oral subjects had mild to distressing pain. Eating was the most commonly affected function. Oral subjects were arbitrarily divided into two groups. Group 1 (n?=?22) included patients with tongue conditions which were associated with candidal infections and the other patients formed Group 2 (n?=?34). A significant difference between Group 1 and Group 2 was observed only with respect to functional limitation (P?=?0.027), indicating that oral subjects of Group 1 had more functional limitation.

Conclusion

Common tongue disorders were believed to be innocuous by most. When the influence of one of the most common form of oral disease (tongue conditions) on OHR-QoL was taken into consideration, OHR-QoL will provide an additional dimension and may help to improve the impact of a disease on an individual??s life. Moreover, we also encourage more extensive use of these OHR-QoL instruments for oral diseases at outpatient clinics.     

Adolescent distinctions between quality of life and self-rated health in quality of life research

Background  

In adult quality of life (QOL) research, the QOL construct appears to differ from self-rated health status. Although increased QOL continues to be recognized as an important outcome in health promotion and medical intervention, little research has attempted to explore adolescent perceptual differences between self-rated health and QOL.     

Quality of life across medical conditions and psychological factors: implications for population health management

Purpose

To identify the contributions of medical conditions and psychological distress to well-being within a non-clinical sample, stratified by age. It was predicted that medical conditions and psychological distress would be negatively associated with well-being. It was also predicted that psychological distress and medical conditions would account for significant variance in well-being. It was further predicted that psychological distress would mediate the relationship between medical conditions and well-being across the life span.

Methods

1,424,307 employees/health plan members that completed an HRA. SEM was used to characterize relationships among medical conditions and psychological distress in predicting well-being (QoL, HRQoL, and impairments in ADLs) in five adult age groups.

Results

Medical conditions and psychological distress were negatively associated with well-being. As age increased, psychological distress was less associated with well-being. However, in those >75 years old, psychological distress had the largest association with well-being. All medical conditions, except cancer, were negatively associated with well-being. There were decreasing effects of medical conditions across the life span, with the exception of pulmonary disease which increased. Psychological distress mediated the relationship between medical conditions and well-being, with chronic pain having the greatest mediation across the life span.

Conclusions

The analysis revealed differences in the contribution of psychological distress and medical conditions to well-being by age group. Additionally, the contribution of psychological distress was equitable to that of medical conditions, thus highlighting the importance of addressing psychological distress in medical populations for well-being. Findings suggest the relevance of age in well-being and the need for further longitudinal investigation.