Measuring the quality of later life.

This paper examines quality of life as a scientific construct with a wide range of applications. The assessment of patients'' quality of life is assuming increasing importance in medicine and health care. Illnesses, diseases and their treatments can have significant impacts on such areas of functioning as mobility, mood, life satisfaction, sexuality, cognition and ability to fulfil occupational, social and family roles. The emerging quality of life construct may be viewed as a paradigm shift in outcome measurement since it shifts the focus of attention from symptoms to functioning. This holistic approach more clearly establishes the patient as the centre of attention and subsumes many of the traditional measures of outcome. Quality of life assessment is particularly relevant to ageing populations both for healthy elderly and for those who develop chronic diseases where maintenance of quality of life rather than cure may be the primary goal of treatment. This paper introduces the concept of quality of life and describes the significant difficulties in definition, measurement and interpretation that must be addressed before such measures can be used as reliable and valid indicators of disease impact and treatment outcomes. It is argued that approaches to quality of life assessment in the elderly should incorporate advances in knowledge about the psychological adaptation to ageing. Consequently, the unique perspective of the individual on his or her own quality of life must be incorporated into outcome assessments aimed at improving the quality of health care. Incorporating measures of subjective outcome such as quality of life into policy decisions on resource allocation in health care will prove one of the major challenges for health services over the next decade.     

A new short form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS.

Quality of life is an increasingly important outcome measure in medicine and health care. Many measures of quality of life present patients with predetermined lists of questions that may or may not be relevant to the individual patient. This paper describes a brief measure, the SEIQoL-DW, which is derived from the schedule for evaluation of individual quality of life (SEIQoL). The measure allows respondents to nominate the areas of life which are most important, rate their level of functioning or satisfaction with each, and indicate the relative importance of each to their overall quality of life. Given its practicality and brevity, the measure should prove particularly useful in clinical situations where patient generated data on quality of life is important. This article describes the first clinical application of the measure, assessing the quality of life of a cohort of patients with HIV/AIDS managed in general practice.     

WEIGHTING HEALTH STATES AND STRONG EVALUATION*

The problem of public consultation over the allocation of health care resources is addressed by considering the role that quality of life measures, such as QALYs and the Nottingham Health Profile, could play. Such measures are typically grounded in social surveys, and as such may reflect public preferences for health care priorities. Using Charles Taylor's concepts of “weak” and “strong” evaluation, it is suggested that current quality of life measures are inadequate, insofar as they typically presuppose that survey respondents are mere “weak evaluators”, who express only inarticulate preferences. Respondents may, conversely, be understood as strong evaluators, with deeper visions of human nature and the good life informing their health preferences. Space is then created for such respondents to be asked to defend their preferences, and so be encouraged to reflect critically and publicly on the beliefs and prejudices that ground their view of health care priorities.     

Weighting health states and strong evaluation

The problem of public consultation over the allocation of health care resources is addressed by considering the role that quality of life measures, such as QALYs and the Nottingham Health Profile, could play. Such measures are typically grounded in social surveys, and as such may reflect public preferences for health care priorities. Using Charles Taylor's concepts of "weak" and "strong" evaluation, it is suggested that current quality of life measures are inadequate, insofar as they typically presuppose that survey respondents are mere "weak evaluators", who express only inarticulate preferences. Respondents may, conversely, be understood as strong evaluators, with deeper visions of human nature and the good life informing their health preferences. Space is then created for such respondents to be asked to defend their preferences, and so be encouraged to reflect critically and publicly on the beliefs and prejudices that ground their view of health care priorities.     

Effectiveness of home care programmes for patients with incurable cancer on their quality of life and time spent in hospital: systematic review

Objective: To investigate whether for patients with incurable cancer comprehensive home care programmes are more effective than standard care in maintaining the patients’ quality of life and reducing their “readmission time” (percentage of days spent in hospital from start of care till death). Design: Systematic review. Methods: A computer aided search was conducted using the databases of Medline, Embase, CancerLit, and PsychLit. The search for studies and the assessment of the methodological quality of the relevant studies were performed by two investigators, blinded from each other. Prospective, controlled studies investigating the effects of a home care intervention programme on patients’ quality of life or on readmission time were included in the analyses. Results: Only 9 prospective controlled studies were found; eight were performed in the United States and 1 in the United Kingdom. Their methodological quality was judged to be moderate (median rating 62 on a 100 point scale). None of the studies showed a negative influence of home care interventions on quality of life. A significantly positive influence on the outcome measures was seen in 2 out of the 5 studies measuring patients’ satisfaction with care, in 3/7 studies measuring physical dimensions of quality of life, in 1/6 studies measuring psychosocial dimensions, and in 2/5 studies measuring readmission time. The incorporation of team members’ visits to patients at home or regular multidisciplinary team meetings into the intervention programme seemed to be related to positive results. Conclusions: The effectiveness of comprehensive home care programmes remains unclear. Given the enormity of the problems faced by society in caring for patients with terminal cancer, further research is urgently needed.

Key messages

• Only nine controlled prospective studies have compared the effects of home care intervention programmes for patients with terminal cancer with those of standard care, in relation to patients’ quality of life and time spent in hospital between start of care and death
• The methodological quality of these studies seemed to be moderate
• Home care programmes did not have a negative influence on quality of life or time spent in hospital; some studies observed positive effects on these outcome measures
• Enabling team members to visit patients at home and holding regular multidisciplinary team meetings seem important elements for obtaining favourable results
• The general belief that home care programmes are effective for patients with terminal cancer is not supported scientifically

     

Quality and professionalism in health care: a review of current initiatives in the NHS.

Since the start of the 1990s the NHS and the clinical professions have made significant investments in quality management in health care, and a plethora of initiatives has been aimed at service improvement. From a patient''s perspective the extent to which these exercises have been cost effective is uncertain, although they have certainly involved great effort and enterprise on the part of many clinicians and managers. An important opportunity now exists to integrate this work into the mainstream of clinical and general service management. If clinicians can accept quality management concepts as central to their professional ethos and regulatory structures this could help them to maintain their professional authority and protect them and their patients from imposed decisions based on inadequate understanding of health care costs and benefits.     

A study of the impact of oral health on the quality of life of older people in the UK- findings from a National Survey.

Objectives The aim of this study was to was to determine whether older adults perceive oral health as affecting their life quality and to identify variations in impacts in relation to socio-demographic factors, dental service utilisation and method of payment. Design This study formed part of the Office for National Statistics Omnibus Survey, which utilised a random probability sample of addresses from the British Postcode Address File (PAF). Setting 3,000 homes were selected from one hundred post sectors across Britain. Respondents were interviewed in their homes about how oral health affects their quality of life. Subjects 454 older people (aged 65 and over) took part in the survey. Main outcome measures The study group perceived oral health as impacting on their quality of life in general (negative and/or positive impact) (70%, 318), enhancing (53%, 241) and detracting (44%, 199) from their life quality. The most frequently perceived way in which oral health affects life quality was its effect on eating and comfort. Older people from higher socio-economic groups reported that oral health had a greater impact on their quality of life in general (positive and/or negative impacts), (OR=1.77,95% CI= 1.22,2.78) and specifically, enhancing their quality of life (OR=1.52, 95% CI=1.01,2.30). Those who reported attending the dentist within the last year perceived that their oral health enhanced their life quality (OR=1.55, 95% CI=1.01,2.38). Conclusions Socio-economic background and dental attendance pattern are associated with how older people perceived oral health as affecting quality of life. These findings may have implications for promoting regular dental attendance and auditing dental services for older people.     

Gene probes.

Gene probes are used in virtually all disciplines of the life sciences. Probes will probably have their greatest impact in health care when used as diagnostic tools to detect and identify micro-organisms responsible for infectious disease. This review will use development of gene probes for the clinical laboratory as a theme and review recent patents and publications which have nurtured probe development.     

One hundred years ago: How to be happy though a doctor

ObjectivesTo assess the growth of quality of life measures and to examine the availability of measures across specialties.DesignSystematic searches of electronic databases to identify developmental and evaluative work relating to health outcome measures assessed by patients.Results3921 reports that described the development and evaluation of patient assessed measures met the inclusion criteria. Of those that were classifiable, 1819 (46%) were disease or population specific, 865 (22%) were generic, 690 (18%) were dimension specific, 409 (10%) were utility, and 62 (1%) were individualised measures. During 1990-9 the number of new reports of development and evaluation rose from 144 to 650 per year. Reports of disease specific measures rose exponentially. Over 30% of evaluations were in cancer, rheumatology and musculoskeletal disorders, and older people''s health. The generic measures—SF-36, sickness impact profile, and Nottingham health profile—accounted for 612 (16%) reports.ConclusionsIn some specialties there are numerous measures of quality of life and little standardisation. Primary research through the concurrent evaluation of measures and secondary research through structured reviews of measures are prerequisites for standardisation. Recommendations for the selection of patient assessed measures of health outcome are needed.

What is already known on this topic

Quality of life measures are increasingly used for measuring health outcomes in evaluative researchThere is little standardisation in the use of such measures within clinical trials

What this study adds

There has been exponential growth in reports relating to the development and evaluation of quality of life measuresThe number of reports varies considerably according to the health problem     

Some observations on attempts to measure appropriateness of care.

There are a growing number of published studies that suggest that much health care is delivered inappropriately. There are calls for measures of appropriateness to be used by purchasers and others to regulate or influence the delivery of health care. This paper explores assumptions inherent in results generated by a leading measure of appropriateness and concludes that there are considerable uncertainties about the measure''s meaning, the magnitude of bias that it contains, and the degree to which its application can be generalised. Some of these uncertainties could be resolved if the tacit assumptions inherent in the generation of the criteria could be made explicit. Existing measures of appropriateness are not yet sufficiently robust to be used with confidence to influence or control the delivery of health care. They may have a use as an aid rather than as a constraint in clinical decision making. A randomised controlled trial could resolve whether patients achieve better outcomes if their care is influenced by appropriateness criteria.     

Can contracts drive clinical care?

The instrument through which a commissioner purchases health services from a provider is, as in other walks of life, a contract, so considerable importance has been attached by the NHS Executive to the contracting mechanism. A contract should in theory influence the quality of the service provided, but they are in many cases an inappropriate vehicle for driving clinical care. Much clinical activity is related to the management of chronic diseases and the effects of aging. The implicit contract here is based not on process and outcome measures but on mutual trust between doctors and patients that the doctors will provide the best care they can within budgetary constraints.     

International Study to Predict Optimized Treatment for Depression (iSPOT-D), a randomized clinical trial: rationale and protocol

Background

Asthma is a prevalent and costly disease resulting in reduced quality of life for a large proportion of individuals. Effective patient self-management is critical for improving health outcomes. However, key aspects of self-management such as self-monitoring of behaviours and symptoms, coupled with regular feedback from the health care team, are rarely addressed or integrated into ongoing care. Health information technology (HIT) provides unique opportunities to facilitate this by providing a means for two way communication and exchange of information between the patient and care team, and access to their health information, presented in personalized ways that can alert them when there is a need for action. The objective of this study is to evaluate the acceptability and efficacy of using a web-based self-management system, My Asthma Portal (MAP), linked to a case-management system on asthma control, and asthma health-related quality of life.

Methods

The trial is a parallel multi-centered 2-arm pilot randomized controlled trial. Participants are randomly assigned to one of two conditions: a) MAP and usual care; or b) usual care alone. Individuals will be included if they are between 18 and 70, have a confirmed asthma diagnosis, and their asthma is classified as not well controlled by their physician. Asthma control will be evaluated by calculating the amount of fast acting beta agonists recorded as dispensed in the provincial drug database, and asthma quality of life using the Mini Asthma Related Quality of Life Questionnaire. Power calculations indicated a needed total sample size of 80 subjects. Data are collected at baseline, 3, 6, and 9 months post randomization. Recruitment started in March 2010 and the inclusion of patients in the trial in June 2010.

Discussion

Self-management support from the care team is critical for improving chronic disease outcomes. Given the high volume of patients and time constraints during clinical visits, primary care physicians have limited time to teach and reinforce use of proven self-management strategies. HIT has the potential to provide clinicians and a large number of patients with tools to support health behaviour change.

Trial Registration

Current Controlled Trials ISRCTN34326236.     

Non-fundholding in Nottingham: a vision of the future.

The 1991 health service reforms introduced the internal market and grave individual fundholding practices budgets with which they could attempt to secure preferential access to secondary health care for their patients. In the view of many doctors this undermined the principle of equity on which the NHS was founded. In Nottingham 200 non-fundholding general practitioners have joined together to act in liaison with their purchasing health authority. A committed representative group of general practitioners can collectively offer more time and knowledge to the contracting process while minimising the impact on clinical workload. As a large purchaser with low management costs the group has secured access to quality secondary care which is equitably available to all patients, preventing the development of a local two tier service. Nottingham''s non-fundholding model of commissioning is equitable and efficient.     

Cost-utility analysis.

Decisions have to be made about allocating health resources. Currently the best economic evaluation method for doing this is cost-utility analysis. This compares the costs of different procedures with their outcomes measured in "utility based" units--that is, units that relate to a person''s level of wellbeing. The most commonly used unit is the quality adjusted life year (QALY). QALYs are calculated by estimating the total life years gained from a procedure and weighting each year to reflect the quality of life in that year. To compare outcomes of different programmes the Rosser index is one measure that is widely used to assign quality of life scores to patients. Combined with a measure of life years gained from a procedure, this enables QALYs to be calculated and procedures ranked according to cost per QALY gained. In this article Ray Robinson explains the measures used and discusses how QALY league tables can be used to guide decisions on resource allocation.     

What is the quality of quality of medical care measures? Rashomon-like relativism and real-world applications

Much attention has been directed toward the measurement of health outcomes and the quality of medical care. Some policymakers tout outcomes measurement as a promising tool for improving health care, while others question whether current quality of care assessment is valid and of practical importance. Although significant advances have been made in the ability to measure quality of care with validity, several major methodological challenges remain. We analyze the quality of quality of medical care measures, using a conceptual framework that outlines the purpose of the measures; paradigms of the quality of care, including Donabedian's structure-process-outcome model and continuous quality improvement; and other key elements, such as scope, time, unit of analysis, and perspectives. Patient preferences and organizational contexts have been underemphasized, and should be incorporated into the framework for conceptualizing quality of care. Quality of care has relativistic and dynamic aspects. Different perspectives lead to different views of what high quality care is, and quality of care is a changing concept since medical science and treatment are constantly evolving. The most appropriate quality measures depend upon whose perspective one takes and the purpose of the measures; if the measures are chosen wisely, the current state of quality of medical care measurement is adequate for both accountability and quality improvement.     

The Influence of Socioeconomic Factors on Health Parameters in Overweight and Obese Adults

The prevalence of being overweight and of obesity is increasing worldwide, and is associated with a high risk to health. Therefore, the aim of our study was to investigate whether normal weight, overweight and obese subjects of low, middle or high socioeconomic status (SES) differ with regard to their health behavior, health, quality of life, and the use of medical care. Data from the Austrian Health Interview Survey (ATHIS) 2006/07, comprising 3 groups of 1,077 individuals, each of whom were normal weight, overweight, or obese, respectively, and matched according to their age, sex and SES, were analyzed concerning health outcomes. The results show that subjects with a low SES differ significantly from those of high SES in terms of their health behavior, self-perceived health, levels of impairment, chronic conditions, quality of life, and health care. Additionally, obesity in adults is associated with sub-optimal dietary practices and worse health, poorer quality of life and medical care than normal weight and overweight individuals. A significant interaction between the weight class and SES was found concerning physical exercise, impairment due to health problems and chronic diseases. A low SES has a strong negative impact on health, especially in obese individuals. Therefore a continuous target group-oriented, non-discriminatory public health program is required, prioritizing obese subjects with low SES.     

Cost effectiveness analysis of early zidovudine treatment of HIV infected patients.

OBJECTIVE--To compare cost effectiveness of early and later treatment with zidovudine for patients infected with HIV. DESIGN--Markov chain analysis of cost effectiveness based on results of use of health care and efficacy from a trial of zidovudine treatment. SETTING--Seven Veterans Affairs medical centres in the United States. SUBJECTS--338 patients with symptomatic HIV infection and a lymphocyte count of 200 x 10(6) to 500 x 10(6) CD4 cells/l. INTERVENTIONS--Zidovudine 1500 mg/day started either at recruitment to the trial or when CD4 cell count fell below 200 x 10(6)/l. MAIN OUTCOME MEASURES--Health care costs and rates of disease progression between six clinical states of HIV infection. RESULTS--Patients given early treatment with zidovudine remained without AIDS for an extra two months at a cost of $10,750 for each extra month without AIDS (at 1991 costs). Cost effectiveness ratio was most sensitive to the cost of zidovudine and to the quality of life of patients receiving early treatment. At treatment of 500 mg/day the cost effectiveness ratio for early treatment was $5432 for each extra month without AIDS. Patients given early treatment experienced more side effects, and if their quality of life was devalued by 8% compared with patients treated later the two treatments were equivalent in terms of quality adjusted months of life without AIDS. CONCLUSIONS--Early treatment with zidovudine is expensive and is very sensitive to the cost of zidovudine and to potential reductions in quality of life of patients who experience side effects. Doctors should reconsider early treatment with zidovudine for patients who experience side effects that substantially compromise their quality of life.     

Integrated health information system based on Resident Assessment Instruments

The paper explores the meaning of Resident Assessment Instruments. It gives a summary of existing RAI instruments and derived applications. It argues how all of these form the basis for an integrated health information system for "chain care" (home care, home for the elderly care, nursing home care, mental health care and acute care). The primary application of RAI systems is the assessment of client care needs, followed by an analysis of the required and administered care with the objective to make an optimal individual care plan. On the basis of RAI, however, applications have been derived for reimbursement systems, quality improvement programs, accreditation, benchmarking, best practice comparison and care eligibility systems. These applications have become possible by the development on the basis of the Minimum Data Set of RAI of outcome measures (item scores, scales and indices), case-mix classifications and quality indicators. To illustrate the possibilities of outcome measures of RAI we present a table and a figure with data of six Dutch nursing homes which shows how social engagement is related to ADL and cognition. We argue that RAI/MDS assessment instruments comprise an integrated health information system because they have consistent terminology, common core items, and a common conceptual basis in a clinical approach that emphasizes the identification of functional problems.     

Long-term digoxin treatment in general practice.

A questionnaire was sent to several general practitioners and specialists in an attempt to obtain a consensus on standards of care for patients receiving long-term digoxin treatment. The consultants'' suggested standards were slightly more stringent than those of the general practitioners. The records of 42 patients taking digoxin under the care of two general practitioners were studied to see how far their actual care matched up to the suggested standards. The models of management proposed by these patients'' doctors were only slightly different from those suggested by other practitioners, but measured against these models the patients'' care was in some cases inadequate. Nevertheless, there was little relationship between the recorded levels of care and the health of the patient, and it may have been the standard of recording rather than the care that was inadequate. Measuring plasma digoxin levels in these patients proved to be of little value. Medical audit is thus a useful tool in helping the general practitioner to review his work and improve his knowledge, but it may not be a practical or true way of measuring the quality of care.     

Alzheimer's disease multiple intervention trial (ADMIT): study protocol for a randomized controlled clinical trial

ABSTRACT: BACKGROUND: Given the current lack of disease-modifying therapies, it is important to explore new models of longitudinal care for older adults with dementia that focus on improving quality of life and delaying functional decline. In a previous clinical trial, we demonstrated that collaborative care for Alzheimer's disease reduces patients' neuropsychiatric symptoms as well as caregiver stress. However, these improvements in quality of life were not associated with delays in subjects' functional decline. Trial design Parallel randomized controlled clinical trial with 1:1 allocation. Participants A total of 180 community-dwelling patients aged [greater than or equal to]45 years who are diagnosed with possible or probable Alzheimer's disease; subjects must also have a caregiver willing to participate in the study and be willing to accept home visits. Subjects and their caregivers are enrolled from the primary care and geriatric medicine practices of an urban public health system serving Indianapolis, Indiana, USA. Interventions All patients receive best practices primary care including collaborative care by a dementia care manager over two years; this best practices primary care program represents the local adaptation and implementation of our prior collaborative care intervention in the urban public health system. Intervention patients also receive in-home occupational therapy delivered in twenty-four sessions over two years in addition to best practices primary care. The focus of the occupational therapy intervention is delaying functional decline and helping both subjects and caregivers adapt to functional impairments. The in-home sessions are tailored to the specific needs and goals of each patient-caregiver dyad; these needs are expected to change over the course of the study.Objective To determine whether best practices primary care plus home-based occupational therapy delays functional decline among patients with Alzheimer's disease compared to subjects treated in the control group. Outcomes The primary outcome is the Alzheimer's Disease Cooperative Studies Group Activities of Daily Living Scale; secondary outcome measures are two performance-based measures including the Short Physical Performance Battery and Short Portable Sarcopenia Measure. Outcome assessments for both the caregiver-reported scale and subjects' physical performance scales are completed in the subject's home. Randomization Eligible patient-care giver dyads will be stratified by clinic type and block randomized with a computer developed randomization scheme using a 1:1 allocation ratio. Blinding Single blinded. Research assistants completing the outcome assessments were blinded to the subjects' treatment group. Trial status Ongoing ClinicalTrial.Gov identifier NCT01314950; date of completed registration 10 March 2011; date first patient randomized 9 March 2011.