Welfarism vs. extra-welfarism

'Extra-welfarism' has received some attention in health economics, yet there is little consensus on what distinguishes it from more conventional 'welfarist economics'. In this paper, we seek to identify the characteristics of each in order to make a systematic comparison of the ways in which they evaluate alternative social states. The focus, though this is not intended to be exclusive, is on health. Specifically, we highlight four areas in which the two schools differ: (i) the outcomes considered relevant in an evaluation; (ii) the sources of valuation of the relevant outcomes; (iii) the basis of weighting of relevant outcomes and (iv) interpersonal comparisons. We conclude that these differences are substantive. (C) 2007 Elsevier B.V. All rights reserved

A new test of the construct validity of the CarerQol instrument: measuring the impact of informal care giving

Purpose: Most economic evaluations of health care programmes do not consider the effects of informal care, while this could lead to suboptimal policy decisions. This study investigates the construct validity of the CarerQol instrument, which measures and values carer effects, in a new population of informal caregivers. Methods: A questionnaire was distributed by mail (n = 1,100, net response rate = 21%) to regional informal care support centers throughout the Netherlands. Two types of construct validity, i.e., convergent and clinical validity, have been analyzed. Convergent validity was assessed with Spearman's correlation coefficients and multivariate correlation between the burden dimensions (CarerQol-7D) and the valuation component (CarerQol-VAS) of the CarerQol. Additionally, convergent validity was analyzed with Spearman's correlation coefficients between the CarerQol and other measures of subjective caregiver burden (SRB, PU). Clinical validity was evaluated with multivariate correlation between CarerQol-VAS and CarerQol-7D, characteristics of caregivers, care recipients and care situation among the whole sample of caregivers and subgroups. Results: The positive (negative) dimensions of CarerQol-7D were positively (negatively) related to CarerQol-VAS, and almost all had moderate strength of convergent validity. CarerQol-VAS was positively associated with PU and negatively with SRB. The CarerQol-VAS reflects differences in important background characteristics of informal care: type of relationship, age of the care recipient and duration of care giving were associated with higher CarerQol-VAS scores. These results confirmed earlier tests of the construct validity of the CarerQol. Furthermore, the dimensions of CarerQol-7D significantly explained differences in CarerQol-VAS scores among subgroups of carers. Conclusion: Notwithstanding the limitations of our study, such as the low response rate, this study shows that the CarerQol provides a valid means to measure carer effects for use in economic evaluations. Future research should derive a valuation set for the CarerQol and further address the instrument's content validity, sensitivity and reliability

Healthcare professionals’ views on patient-centered care in hospitals

Background: Patient-centered care (PCC) is a main determinant of care quality. Research has shown that PCC is a multi-dimensional concept, and organizations that provide PCC well report better patient and organizational outcomes. However, little is known about the relative importance of PCC dimensions. The aim of this study was therefore to investigate the relative importance of the eight dimensions of PCC according to hospital-based healthcare professionals, and examine whether their viewpoints are determined by context. Methods: Thirty-four healthcare professionals (16 from the geriatrics department, 15 from a surgical intensive care unit, 3 quality employees) working at a large teaching hospital in New York City were interviewed using Q methodology. Participants were asked to rank 35 statements representing eight dimensions of PCC extracted from the literature: patient preferences, physical comfort, coordination of care, emotional support, acce

Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies

Purpose: Relatively few attempts to measure the effects on the health-related quality of life (HRQoL) of informal caregivers within the context of economic evaluations have been reported. This paper is an exploratory attempt to find suitable methods to assess caregi

Expectations regarding length and health related quality of life: Some empirical findings

Own expectations regarding length and future quality of life can differ from objective measures such as actuarial life expectancy. If so, this may have implications for health behaviour, seeking medical care and for methods used in health economic research. In this paper, we present evidence on own expectations regarding length and quality of life, using data obtained from a Dutch convenience sample (n=600). Data were obtained through a written questionnaire and a web-based survey. Own expectations regarding future quality of life were obtained by using the EQ-5D descriptive system on which respondents could indicate expected health profiles for the ages 60-90. We find that respondents significantly overestimate life expectancy (by 4.1 years, males 7.0 years and females 1.7 years), but appear to underestimate future quality of life from the age 70 onward. Regression analysis is used to explain individual expectations. Age, current health status and the perception of current lifestyle are especially important explanatory variables of people's own expectations regarding length and quality of life. Average age of death of relatives moreover explains self-estimated life expectancy, whereas self-estimated life expectancy explains expectations regarding quality of life. Given the influence inaccurate expectations may have on actual behaviour, more research on own expectations and their relation with actual behaviour is needed.Subjective expectations Life expectancy Quality of life The Netherlands

When Time is Not on Your Side: Patient Experiences with Waiting for Home Care and Admission to a Nursing or Residential Home

Background: Waiting for care is common in many countries as a result of supply-side rationing. The effects that waiting has on patients and their environment have not received much attention thus far. We discuss the literature and present the results of a study on patient experiences with waiting for home care or admission to a nursing or residential home. Methods: Late in 2003 we recruited people on a waiting list in the Waardenland and Midden-Holland regions in the Netherlands to participate in a survey. People were randomly selected from waiting lists for home care or admission to a nursing or residential home. A structured questionnaire was administered to either the patient or their proxy. Respondents answered questions about socioeconomic status, health, well-being, intermittent care use, care providers, and additional costs associated with waiting. Furthermore, the survey included questions addressing waiting (time) perceptions Health status, well-being (or happiness), and different measures of the burden of waiting were assessed using a visual analog scale (VAS). Finally, respondents were asked to evaluate five statements regarding changes in health status and feelings of uncertainty, dependence, stress, and autonomy as a result of waiting for care, using a Likert-type scale (four categories ranging from `totally agree' to `totally disagree'). Data were analyzed using SPSS (version 12.0.1). Differences in means between people waiting for home care and admission were tested using one-way ANOVA; differences in proportions were tested using the Chi-squared test. Multivariate analysis was conducted to explore associations of the burden of waiting with background variables and characteristics of intermittent care received, using a forward conditional regression model. Results: We found that waiting for care may have far-reaching consequences for patients and their families, and that approximately half of the patients waiting for care considered their current waiting time to be unacceptable. However, the mean burden of waiting is moderate and associated with the extent to which shortages in care are supplemented by support from informal caregivers, volunteers, or a domestic help. Conclusions: Differences in how waiting time is perceived between individuals and care sectors are helpful building blocks for the development of more tailor-made policies aimed at reducing the burden of waiting time. These policies include additional support or quicker access to support at home for those most in need, and setting waiting time guarantees in order to reduce uncertainty.Community-care, Health-services-accessibility, Home-care-services

Acceptability of less than perfect health states

Health normally deteriorates beyond a certain age. This means, in Amartya Sen's terms, that one's health capabilities decline beyond a certain age, making it more difficult to achieve functionings such as mobility or sexual activity. In this paper, we investigate whether this normal reduction in quality of life also induces less than perfect health states to be considered acceptable at advanced stages of life. In other words, we investigate whether it is considered acceptable that health capabilities decline over time. In this study, we use domain-specific descriptions of health (mostly following the EQ-5D domains) in order to investigate whether the acceptability of less than perfect health states is similar for all types of health losses. Besides a theoretical consideration of this issue, we present some empirical evidence based on the answers of 226 respondents to a web-based survey. The results show that often individuals do indeed consider less than perfect health states acceptable, especially at more advanced stages of life. Mild health problems are more often considered acceptable than severe health problems. The acceptability of health states is related to the quality of life score of these states, i.e., worse states are considered less acceptable. This may have implications for the allocation of scarce health care resources.Health states Acceptability Right to health care Rationing

Caring for and caring about: Disentangling the caregiver effect and the family effect

Besides patients' health and well-being, healthcare interventions may affect the well-being of significant others. Such 'spill over effects' in significant others may be distinguished in two distinct effects: (i) the caregiving effect and (ii) the family effect. The first refers to the welfare effects of providing informal care, i.e., the effects of caring for someone who is ill. The second refers to a direct influence of the health of a patient on others' well-being, i.e., the effects of caring about other people. Using a sample of Dutch informal caregivers we found that both effects exist and may be comparable in size. Our results, while explorative, indicate that economic evaluations adopting a societal perspective should include both the family and the caregiving effects measured in the relevant individuals.Informal care Family effect Caregiving effect Economic evaluation