Measuring the Wellbeing of Cancer Patients with Generic and Disease-Specific Instruments.

Different wellbeing measures have been used among cancer patients. This study aimed to first investigate the sensitivity of health state utility (HSU), capability, and subjective wellbeing (SWB) instruments in cancer. A cancer-specific instrument (QLQ-C30) was included and transferred onto the cancer-specific HSU scores.

Valuation of Treatments for Rare Diseases: A Systematic Literature Review of Societal Preference Studies.

Introduction: We sought to synthesize published empirical studies that elicited and characterized societal valuations of orphan drugs and the attributes that may drive different valuations for orphan drugs versus other treatments.

Methods: We conducted a systematic literature review (SLR) in MEDLINE and EMBASE databases up to November 2, 2020. Search terms covered societal preferences and attributes of orphan drugs (e.

Correction to: Are Quality-Adjusted Life Years a Good Proxy Measure of Individual Capabilities?

Open Access This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0International License.

Health technology assessment (HTA) and economic evaluation: efficiency or fairness first.

The economic evaluation which supports Health Technology Assessment (HTA) should inform policy makers of the value to society conferred by a given allocation of resources. However, neither the theory nor practise of economic evaluation satisfactorily reflect social values. Both are primarily concerned with efficiency, commonly conceptualised as the maximisation of utility or quality adjusted life years (QALYs).

Variation in the apparent importance of health-related problems with the instrument used to measure patient welfare.

Aims: This paper investigates the distributional implications for eight population groups of using six different instruments to measure wellbeing and to prioritise access to health services. Specifically, it examines the importance of different physical and psycho-social problems for the scores obtained using each instrument and whether scores differ because of differences in the concept measured by the instrument or because of the instrument's construction.

Methods: Patients with seven chronic conditions and a sample of the 'healthy' public were administered six instruments: two utility instruments; two self-rating scales; a subjective wellbeing instrument and the ICECAP measure of capability.

Sharing and the Provision of "Cost-Ineffective" Life-Extending Services to Less Severely Ill Patients.

Background: Cost-utility analysis prioritizes services using cost, life-years, and the health state utility of the life-years. Nevertheless, a significant body of evidence suggests that the public would prefer more variables to be considered in decision making and at least some sharing of the budget with services for severe conditions that are not cost-effective because of their high cost.

Objectives: To examine whether this preference for sharing persists for less severe conditions when both cost effectiveness and illness severity would indicate that resources should be allocated to other services.

Uncertainty and the Undervaluation of Services for Severe Health States in Cost-Utility Analyses.

Objectives: To test the hypothesis that the "severity effect"-the preference for more than utility-maximizing expenditure on severe health states-may be the result of, or exacerbated by, the uncertainty associated with the chance of contracting the illness that causes the severe health state.

Methods: Survey respondents were asked to imagine that they will contract one of two illnesses and asked to allocate a budget between two insurance policies, each of which provides services for the treatment of one of the illnesses. A person's final health state varied with the amount of insurance purchased for the illness that occurred and therefore with the level of treatment.

Social preferences for prioritising the treatment of disabled and chronically ill patients: beyond the order effect.

Previous evidence suggests that members of the public value life saving services differently when they are for patients with a pre-existing permanent disability and when they are for patients who become disabled at the onset of treatment - for example, as a result of treatment that is not entirely effective. However, the valuation of services in these two cases has also been found to differ with the order in which they are presented in a population survey. This casts doubt upon the validity of the results and leaves unresolved the nature of the public's true preferences.

Does a patient's health potential affect the social valuation of health services?

Background: Patients with a permanent impairment may be unable to reach full health. Consequently health services which cure illnesses which are unrelated to the impairment may increase health less than services for patients with no impairment. While it has been argued that this should not lead to discrimination against impaired patients there is little evidence to determine whether this equity-efficiency trade-off is consistent with social values.

Communal Sharing and the Provision of Low-Volume High-Cost Health Services: Results of a Survey.

Introduction: This paper suggests and tests a reason why the public might support the funding of services for rare diseases (SRDs) when the services are effective but not cost effective, i.e. when more health could be produced by allocating funds to other services.

Does the use of the proportional shortfall help align the prioritisation of health services with public preferences?

It has been proposed that equity may be included in the economic evaluation of health services using the 'proportional shortfall' (PS)-the proportion of a person's QALY expectation that they would lose because of an illness. The present paper reports the results of a population survey designed to test whether PS helped to explain people's preferences for health services and whether it did this better than the absolute shortfall or the equity related variables that PS seeks to replace. Survey respondents were asked to allocate 100 votes between 13 scenarios and a standard scenario.

Social preferences for prioritizing the treatment of severely ill patients: The relevance of severity, expected benefit, past health and lifetime health.

The study examined the preferences of a sample of the Australian public and health professionals regarding the relative importance of four different criteria for prioritizing between patients: the severity of the condition, the size of the benefit from the intervention, past health losses and expected lifetime health. A discussion-group methodology was adopted to elicit social preferences. This allowed participants time to consider all of the alternatives fully, to seek clarification of the task, and to engage in open debate about the issues raised.

Are Quality-Adjusted Life Years a Good Proxy Measure of Individual Capabilities?

Background: There is a debate in the health economics literature concerning the most appropriate way of applying Amartya Sen's capability approach in economic evaluation studies. Some suggest that quality-adjusted life years (QALYs) alone are adequate while others argue that this approach is too narrow and that direct measures of capability wellbeing provide a more extensive application of Sen's paradigm.

Objective: This paper empirically explores whether QALYs provide a good proxy for individual capabilities.

Assessing the validity of the ICECAP-A capability measure for adults with depression.

Background: Effectiveness and cost-effectiveness are increasingly important considerations in determining which mental health services are funded. Questions have been raised concerning the validity of generic health status instruments used in economic evaluation for assessing mental health problems such as depression; measuring capability wellbeing offers a possible alternative. The aim of this study is to assess the validity of the ICECAP-A capability instrument for individuals with depression.

Determining the value of medical technologies to treat ultra-rare disorders: a consensus statement.

Background: In most jurisdictions, policies have been adopted to encourage the development of treatments for rare or orphan diseases. While successful as assessed against their primary objective, these policies have prompted concerns among payers about the economic burden that might be caused by an annual cost per patient in some cases exceeding 100,000 Euro. At the same time, many drugs for rare disorders do not meet conventional standards for cost-effectiveness or 'value for money'.

Shared medical appointments for Aboriginal and Torres Strait Islander men.

Background: Aboriginal and Torres Strait Islander health is generally the worst of any population group in Australia. Inaccessibility to health services is one possible cause of this. Shared medical appointments (SMAs) appear to be a culturally competent and appropriate way of improving access to, and the quality of, primary healthcare services for Aboriginal and Torres Strait Islander peoples.

Estimating Utility Weights for the Vision Related Quality of Life Index.

Purpose: The VisQoL instrument was constructed as a vision-specific addition to the AQoL-6D multi-attribute utility instrument. The composite instrument, the AQoL-7D, was assigned utility scores that are the basis for now estimating VisQoL utilities when it is used as a stand-alone instrument. This study aimed to construct mapping functions that allow utility scores to be assigned to the Vision Related Quality of Life (VisQoL) instrument, a stand-alone vision-specific quality-of-life measure.

Mapping Between the Sydney Asthma Quality of Life Questionnaire (AQLQ-S) and Five Multi-Attribute Utility Instruments (MAUIs).

Purpose: Economic evaluation of health services commonly requires information regarding health-state utilities. Sometimes this information is not available but non-utility measures of quality of life may have been collected from which the required utilities can be estimated. This paper examines the possibility of mapping a non-utility-based outcome, the Sydney Asthma Quality of Life Questionnaire (AQLQ-S), onto five multi-attribute utility instruments: Assessment of Quality of Life 8 Dimensions (AQoL-8D), EuroQoL 5 Dimensions 5-Level (EQ-5D-5L), Health Utilities Index Mark 3 (HUI3), 15 Dimensions (15D), and the Short-Form 6 Dimensions (SF-6D).

How important is severity for the evaluation of health services: new evidence using the relative social willingness to pay instrument.

The 'severity hypothesis' is that a health service which increases a patient's utility by a fixed amount will be valued more highly when the initial health state is more severe. Supporting studies have employed a limited range of analytical techniques and the objective of the present paper is to test the hypothesis using a new methodology, the Relative Social Willingness to Pay. Three subsidiary hypotheses are: (1) that the importance of the 'severity effect' varies with the type of medical problem; (2) that the relationship between value and utility varies with the severity of the initial health state; and (3) that there is a threshold beyond which severity effects are insignificant.

Deriving population norms for the AQoL-6D and AQoL-8D multi-attribute utility instruments from web-based data.

Objectives: (i) to demonstrate a method which ameliorates the problem of self-selection in the estimation of population norms from web-based data and (ii) to use the method to calculate population norms for two multi-attribute utility (MAU) instruments, the AQoL-6D and AQoL-8D, and population norms for the sub-scales from which they are constructed.

Methods: A web-based survey administered the AQoL-8D MAU instrument (which subsumes the AQoL-6D questionnaire), to members of the public along with the AQoL-4D which has extant population norms. Age, gender and the AQoL-4D were used as post-stratification auxiliary variables to construct weights to ameliorate the potential effects of self-selection associated with web-based surveys.

Age Weights for Health Services Derived from the Relative Social Willingness-to-Pay Instrument.

The effect of a patient's age on the social valuation of health services remains controversial, with empirical results varying in magnitude and implying a different age-value profile. This article employs a new methodology to re-examine these questions. Data were obtained from 2 independent Web-based surveys that administered the Relative Social Willingness to Pay instrument.

The Relative Impacts of Disease on Health Status and Capability Wellbeing: A Multi-Country Study.

Background: Evaluations of the impact of interventions for resource allocation purposes commonly focus on health status. There is, however, also concern about broader impacts on wellbeing and, increasingly, on a person's capability. This study aims to compare the impact on health status and capability of seven major health conditions, and highlight differences in treatment priorities when outcomes are measured by capability as opposed to health status.

Measuring the Sensitivity and Construct Validity of 6 Utility Instruments in 7 Disease Areas.

Background: Health services that affect quality of life (QoL) are increasingly evaluated using cost utility analyses (CUA). These commonly employ one of a small number of multiattribute utility instruments (MAUI) to assess the effects of the health service on utility. However, the MAUI differ significantly, and the choice of instrument may alter the outcome of an evaluation.

Diabetes and quality of life: Comparing results from utility instruments and Diabetes-39.

Objective: To compare the Diabetes-39 (D-39) with six multi-attribute utility (MAU) instruments (15D, AQoL-8D, EQ-5D, HUI3, QWB, and SF-6D), and to develop mapping algorithms which could be used to transform the D-39 scores into the MAU scores.

Research Design And Methods: Self-reported diabetes sufferers (N=924) and members of the healthy public (N=1760), aged 18 years and over, were recruited from 6 countries (Australia 18%, USA 18%, UK 17%, Canada 16%, Norway 16%, and Germany 15%). Apart from the QWB which was distributed normally, non-parametric rank tests were used to compare subgroup utilities and D-39 scores.