Quality of life assessments and levels of decision making: differentiating objectives

The purpose of this paper is to examine uses of quality of life (QOL) measurements at different levels of decision making within the health care system, ranging from the micro (clinical) level, through the meso (agency, institutional or regional) level to the macro and meta (governmental) levels. We use individualized, group and population-based QOL and preference assessments as illustrative examples of ways in which QOL information and decision making level interact. We conclude that the meso and macro levels pose particularly challenging problems, and suggest that, if the primary emphasis is placed on applications of QOL assessments at the micro (clinical) level of decision making, a research agenda that is much too limited may be adopted.Supported by a grant from the National Cancer Institute of Canada with funds from the Canadian Cancer Society.     

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.     

Multilevel latent variable models for global health-related quality of life assessment

Quality of life (QOL) assessment is a key component of many clinical studies and frequently requires the use of single global summary measures that capture the overall balance of findings from a potentially wide-ranging assessment of QOL issues. We propose and evaluate an irregular multilevel latent variable model suitable for use as a global summary tool for health-related QOL assessments. The proposed model is a multiple indicator and multiple cause style of model with a two-level latent variable structure. We approach the modeling from a general multilevel modeling perspective, using a combination of random and nonrandom cluster types to accommodate the mixture of issues commonly evaluated in health-related QOL assessments--overall perceptions of QOL and health, along with specific psychological, physical, social, and functional issues. Using clinical trial data, we evaluate the merits and application of this approach in detail, both for mean global QOL and for change from baseline. We show that the proposed model generally performs well in comparing global patterns of treatment effect and provides more precise and reliable estimates than several common alternatives such as selecting from or averaging observed global item measures. A variety of computational methods could be used for estimation. We derived a closed-form expression for the marginal likelihood that can be used to obtain maximum likelihood parameter estimates when normality assumptions are reasonable. Our approach is useful for QOL evaluations aimed at pharmacoeconomic or individual clinical decision making and in obtaining summary QOL measures for use in quality-adjusted survival analyses.     

Data quality in hospital strategic information systems: a summary of survey findings

Fundamental changes in health care financing and delivery have resulted in an unprecedented need for data and information. The application of computer technology to daily hospital operations has gone far toward aiding various kinds of organizational decision making. The quality of those decisions, however, is dependent upon the quality of the data delivered by the various information systems used in the course of health care delivery and management. What remains unknown is the extent to which poor data quality occurs and what actions are taken to measure and control data quality in information systems used for strategic decision making. This article summarizes the results of a survey that was conducted for the purpose of explaining what information systems are important to hospital administrators in their strategic decision making, the frequency with which strategic decision makers encounter data quality problems, and what, if any, actions are taken to prevent, control, or correct apparent data quality problems.     

Information and involvement

This article discusses the beliefs that provision of good quality information is the key to (a) successful and satisfying involvement of patients in their own decision‐making and (b) involvement of lay people in the research process, in debate and other involvement in wider health issues. Education of children, health professionals, the public and the media is advocated, enabling critical appraisal skills and good quality health information to lead to improved involvement of citizens in health‐care decisions of all kinds, both individual and societal. Examples of individual, group and specific group involvement through research projects, debates about screening, Citizens’ Juries, etc. are used to illustrate benefits to patients and to health provision in general.     

Adult outpatients with depression: worse quality of life than in other chronic medical diseases in Argentina

Current research into the impact of major depressive illness on society goes beyond estimating its prevalence, complications or comorbidity patterns, to include research that seeks to establish how this disorder affects individuals' daily functioning and well-being. However, it is unclear whether depression affects such broadly defined quality of life (QOL) outcomes to a similar or an even greater extent than chronic physical illness. The present study assessed QOL in a sample of 48 ambulatory depressed patients who sought psychiatric assistance at a centre in La Plata, Argentina, during a 15-month period. All of them met DSM-IV criteria for current major depression, as diagnosed by clinicians. For the purposes of comparison, we also evaluated the QOL of additional samples of persons who were healthy or who had chronic physical illness. QOL was assessed with the WHOQOL-100, a generic and transcultural instrument developed simultaneously in 15 centres, by the World Health Organization (WHO). Results indicated that QOL was significantly poorer in depressed persons than in either healthy persons or individuals with other frequent chronic pathologies in Argentina. The impact of depression was also found to be related to the seriousness of the episode. We suggest that it is important to include QOL assessments of patients with depressive disorders when evaluating the course and progress of their treatment. Such assessments can be used in health care decision making and resource allocation.     

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.     

生命质量评价应用及存在问题分析

传统的健康评价指标如患病率、死亡率及期望寿命等越来越不适应现代人对健康评价和需求。以重视健康主观感受的生命质量评价得到了广泛应用,不仅应用于一般人群和特殊人群,而且还有助于卫生政策的制定和卫生效益的评价。但生命质量评价在我国应用中还存在重视程度不够、应用范围不广、测量手段单一等问题。     

The use of computer-based simulation in a Master of Health Administration curriculum.

In this paper, the use of a simulation tool to support the appreciation of data and information by health administration students with varied backgrounds and educational training is discussed. Specifically, the authors developed educational and training material that can be used in a variety of courses to improve information management and decision making. Improved information management is being recognized as a critical component of the movement to achieve consistent quality in patient care, institutional performance, and policy planning. This is now especially important as new information systems are making data and good quality evidence increasingly more available. Ultimately, it is hoped that this process will lead to findings that will assist evidence-based decision making within all health providers.     

Overview of the use of the U.S. EPA exposure factors handbook

Risk assessments are important components of the decision making process. At hazardous waste sites, they are used as tools to determine appropriate cleanup levels. Therefore, it is critical that the best up-to-date methods, models, and exposure data are available to the exposure and risk assessor to realistically estimate the potential for human and ecological exposures to environmental contaminants. The EPA Exposure Factors Handbook published in 1997 is a tool available to exposure assessors which summarizes statistical data on exposure factors necessary to conduct human health exposure assessments. Since it was first published by EPA in 1989, the handbook has been the primary source of data for human exposure assessments. The purpose of this paper is to provide an overview of the handbook, its impact, applications, discussion about data gaps, and future directions.     

HIV-related knowledge, attitudes, and stress among health care providers: a literature review and research agenda

The role of health services administrators in assuring high quality care for HIV-positive individuals and a physically safe, psychologically comfortable work environment for providers is an important one. Administrators need sound information on which to base policy and operational decisions about treatment of infected individuals. While the current literature provides some information in this regard, significant limitations and gaps remain. We have reviewed this literature and suggested a number of research issues that are relevant to administrative decision making. As the epidemic grows and changes in geographic diffusion and patient populations affected, empirical information to inform decision making will become even more critical. In addition, this information and the methods developed for data collection and interpretation in this area may be applicable to providers caring for a broader range of chronic conditions.     

Factors of the innovation, organization, environment, and individual that predict the influence five systematic reviews had on public health decisions.

OBJECTIVE: To determine the extent to which systematic reviews of public health interventions influenced public health decisions and which factors were associated with influencing these decisions. METHODS: This cross-sectional follow-up survey evaluated the use of five systematic reviews in public health decision making. Independent variables included characteristics of the innovation, organization, environment, and individual. Primary data were collected using a telephone survey and a self-administered organizational demographics questionnaire. Public health decision makers in all 41 public health units in Ontario were invited to participate in the study. Multiple linear regression analyses on the five program decisions were conducted. RESULTS: The systematic reviews were perceived as having the greatest amount of influence on decisions related to program justification and program planning, and the least influence on program evaluation decisions. The greater the perception that one's organization valued the use of research evidence for decision making and that ongoing training in the critical appraisal of research literature was provided, the greater the perception of the influence the systematic review had on public health decisions. CONCLUSIONS: Organizational characteristics are important predictors of the use of systematic reviews in public health decision making. Future dissemination strategies need to promote the value of using systematic reviews for program decision making as well as promote ongoing training in critical appraisal among intended users in Ontario.     

Can Bayesian methods make data and analyses more relevant to decision makers? A perspective from Medicare

Decision making in health care has become increasingly reliant on information technology, evidence-based processes, and performance measurement. It is therefore a time at which it is of critical importance to make data and analyses more relevant to decision makers. Those who support Bayesian approaches contend that their analyses provide more relevant information for decision making than do classical or "frequentist" methods, and that a paradigm shift to the former is long overdue. While formal Bayesian analyses may eventually play an important role in decision making, there are several obstacles to overcome if these methods are to gain acceptance in an environment dominated by frequentist approaches. Supporters of Bayesian statistics must find more accommodating approaches to making their case, especially in finding ways to make these methods more transparent and accessible. Moreover, they must better understand the decision-making environment they hope to influence. This paper discusses these issues and provides some suggestions for overcoming some of these barriers to greater acceptance.     

Cardiopulmonary resuscitation preferences in Dutch community-dwelling and hospitalized elderly people: an interaction between gender and quality of life.

OBJECTIVE: To study the effects of information, gender, quality of life, and hospitalization on cardiopulmonary resuscitation (CPR) preferences and on the wish for information and participation in CPR discussions. METHODS: Seventy-five community-dwelling inhabitants of the city of Leiden and 45 consecutive patients in two hospitals in Leiden, The Netherlands, aged 75 years or older, were interviewed about their CPR preferences in their current states of health and in three hypothetical scenarios. Health-related quality of life (QOL) was assessed in separate items. The subjects were asked about their wishes for information and participation in CPR discussions. RESULTS: The chances of surviving CPR were overestimated. After receiving accurate information, 65% of the subjects, more women than men, did not want CPR. Overall QOL did not differ between men and women. Concerning the separate QOL items, men's CPR preferences were more associated with pain, whereas women's were more associated with being impaired in physical functioning and daily and social activities. CPR preferences in the current state of health did not differ significantly between community-dwelling and hospitalized participants. Although only 6% of all participants had ever discussed CPR with their doctors, 70% indicated they wanted routine CPR discussions (either when in good health at home or upon hospital admission), and 61% preferred to make the final decision about CPR themselves. CONCLUSIONS: CPR preferences are affected by different QOL items in men and women. CPR preferences in the current state of health do not differ between hospitalized and community-dwelling elderly people. As the majority of elderly people want CPR discussions, they should be involved in decision making concerning CPR.     

Indirect Treatment Comparison/Network Meta-Analysis Study Questionnaire to Assess Relevance and Credibility to Inform Health Care Decision Making: An ISPOR-AMCP-NPC Good Practice Task Force Report

Despite the great realized or potential value of network meta-analysis of randomized controlled trial evidence to inform health care decision making, many decision makers might not be familiar with these techniques. The Task Force developed a consensus-based 26-item questionnaire to help decision makers assess the relevance and credibility of indirect treatment comparisons and network meta-analysis to help inform health care decision making. The relevance domain of the questionnaire (4 questions) calls for assessments about the applicability of network meta-analysis results to the setting of interest to the decision maker. The remaining 22 questions belong to an overall credibility domain and pertain to assessments about whether the network meta-analysis results provide a valid answer to the question they are designed to answer by examining 1) the used evidence base, 2) analysis methods, 3) reporting quality and transparency, 4) interpretation of findings, and 5) conflicts of interest. The questionnaire aims to help readers of network meta-analysis opine about their confidence in the credibility and applicability of the results of a network meta-analysis, and help make decision makers aware of the subtleties involved in the analysis of networks of randomized trial evidence. It is anticipated that user feedback will permit periodic evaluation and modification of the questionnaire.     

A five-year prospective study of quality of life after colorectal cancer

Purpose

Long-term (??5?years) quality of life after colorectal cancer is not well described. The present study assessed quality of life (QOL) and psychological distress in colorectal cancer survivors more than 5?years to describe changes over time and antecedents of long-term outcomes.

Method

A prospective survey of a population-based sample of 763 colorectal cancer patients assessed socio-demographic variables, health behaviors, optimism, threat appraisal, and perceived social support at 5?months post-diagnosis as predictors of QOL and psychological distress 5?years post-diagnosis.

Results

QOL improved over time (P?P?>?0.07 for each measure). Risk factors for poorer QOL and/or greater psychological distress included: later stage disease, having a permanent stoma, rectal cancer, fatigue, smoking, being single, low social support, low optimism, and a more negative cancer threat appraisal. Being women, having a pet, having a private health insurance, and receiving both surgery and adjuvant treatment were protective.

Conclusion

Consistent with response shift theory, the antecedents of QOL after colorectal cancer are multifactorial and include predisposing socio-demographic, medical, and psychological variables. Psychosocial interventions that target both social support and threat appraisal may be effective for this patient group. Additional stepped-up support may be needed for people from a poorer social environment who have multiple risk factors for poorer adjustment. Health system effects require further investigation.     

Community- versus Individual-Level Indicators to Identify Pediatric Health Care Need

Increasingly, geographic information systems employing spatial data are being used to identify communities with poorer health care status. Since health care indicators are strongly linked to income, could these data, usually based on adult indicators, be used for pediatric health care need? We hypothesized that individual-level indicators such as quality of life scales (QOL) would be better than community-level indicators at identifying families with poorer health care practices. Surveys and medical record reviews were used for a sample of 174 caregivers of young children. Lower level of income was associated with poorer scores on several QOL domains, and on the primary health practices (i.e., non-urgent emergency room use and lack of age-appropriate immunization status). One community-level indicator, the medically underserved area (MUA), was almost as good as the best individual-level indicators at predicting primary health care practices. The community-level indicator of MUA appears to meet its initial intent, providing information on the location of very low-income individuals with high health care need even among a sample of Medicaid-insured children with an identified health care provider.     

Economic appraisal in the National Health Service: a survey.

Considerable emphasis is currently being placed on the pursuit of efficiency in health service provision. This paper reports the results of a survey of the use of economic appraisal to assist decision makers in choosing efficient courses of action. The survey group comprised National Health Service staff who had undertaken a correspondence course in health economics. The respondents were asked to identify issues arising locally where economic appraisal could have been applied but was not, and to suggest reasons why economic appraisal had not been used. They were then asked to give local examples of attempts to use economic appraisal and to indicate whether they were successful or what problems had been encountered. The results suggest that there is greater use of economic appraisal than is apparent from published sources but there is still not very much. The paper also summarises comments from the respondents on the decision making process in the National Health Service.     

Gesundheitsökonomie und HTA

For a comprehensive health technology assessment (HTA), health economic studies are analysed as well as medical studies. Significance and effects of HTA are rather different in European countries. In Germany HTA is conducted by two official agencies: DIMDI and IQWiG. While DIMDI requires health economic assessments, IQWiG is prohibited from considering economic aspects by law (pure assessment of benefits). For the health economic assessment in HTA reports mainly secondary scientific evidence is exploited, i.e. primarily cost effectiveness and cost utility analyses. The study perspective, the study alternatives and the modelling methods are of great importance for the evaluation and have to be justified in depth. The cost effectiveness ratio and the budget impact are the most important results of the health economic assessment, which is the basis for the appraisal by the health care authorities. For this decision medical, utilitarian or other aspects like the avoidance of unwanted distribution effects are considered. On the other hand often only a few studies are available for the decision making when the appraisal has to be done. This problem might be less relevant in the near future as the number of HTAs and the number of health economic evaluations increases.