Patients as team members: Factors affecting involvement in treatment decisions from the perspective of patients with a chronic condition.

BACKGROUND: Active patient involvement in treatment decisions is seen as a feature of patient-centred care that will ultimately lead to better healthcare services and patient outcomes. Although many factors have been identified that influence patient involvement in treatment decisions, little is known about the different views that patients have on which factors are most important. OBJECTIVE: This study explores the views of patients with a chronic condition on factors influencing their involvement in treatment decisions. DESIGN: Q-methodology was used to study the views of patients. Respondents were asked to rank a set of 42 statements from the least important to the most important for active patient involvement in treatment decision-making. The set of 42 statements was developed based on a literature search and a pilot in which two external researchers, 15 patients and four healthcare professionals participated. A total of 136 patients with one of three major chronic conditions were included: diabetes types 1 and 2, respiratory disease (i.e., chronic obstructive pulmonary disease and asthma) and cancer (i.e., breast cancer and prostate cancer). Data were collected in a face-to-face interview setting in the Netherlands. RESULTS: Four distinct views on the factors influencing active patient involvement were identified among patients with a chronic condition. (1) Enabled involvement: the extent to which patients are facilitated and empowered to participate will lead to patient involvement. (2) Relationship-driven involvement: the relationship between patients and healthcare professionals drives patient involvement. (3) Disease impact-driven involvement: the severity of disease drives patient involvement. (4) Cognition-driven involvement: knowledge and information drive patient involvement. DISCUSSION AND CONCLUSION: From the patients' perspective, this study shows that there is no one-size-fits-all approach to involving patients more actively in their healthcare journey. Strategies aiming to enhance active patient involvement among patients with a chronic condition should consider this diversity in perspectives among these patients. PATIENT CONTRIBUTION: Patients are the respondents as this study researches their perspective on factors influencing patient involvement. In addition, patients were involved in pilot-testing the statement set.

Valuing QALY gains by applying a societal perspective.

Interpreting the outcomes of cost utility analyses requires an appropriately defined threshold for costs per quality-adjusted life year (QALY). A common view is that the threshold should represent the (consumption) value a society attaches to a QALY. So far, individual valuations of personal health gains have mainly been studied rather than potentially relevant social values. In this study, we present the first direct empirical estimates of the willingness to pay for a QALY from a societal perspective. We used the contingent valuation approach, valuing QALYs under uncertainty and correcting for probability weighting. The estimates obtained in a representative sample of the Dutch population (n = 1004) range from €52,000 to €83,000, depending on the specification of the societal perspective. The scale sensitivity was weak, however.

Inquiry into the relationship between equity weights and the value of the QALY.

BACKGROUND: A commonly held view of the decision rule in economic evaluations in health care is that the final incremental cost-effectiveness ratio needs to be judged against some threshold, which is equal for all quality-adjusted life-year (QALY) gains. This reflects the assumption that "a QALY is a QALY" no matter who receives it, or the equity notion that all QALY gains are equally valuable, regardless of the context in which they are realized. If such an assumption does not adequately reflect the distributional concerns in society, however, different thresholds could be used for different QALY gains, whose relative values can be seen as "equity weights." AIM: Our aim was to explore the relationship between equity or distributional concerns and the social value of QALYs within the health economics literature. In light of the empirical interest in equity-related concerns as well as the nature and height of the incremental cost-effectiveness ratio threshold, this study investigates the "common ground" between the two streams of literature and considers how the empirical literature estimating the incremental cost-effectiveness ratio threshold treats existing distributional considerations.

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 caregivers' HRQoL, using a population of parents of children with major congenital anomalies. METHODS: A total of 306 parents of children born with either congenital anorectal malformations (ARM) or congenital diaphragmatic hernia were surveyed. They rated their current HRQoL on the EQ-VAS. After that, they rated their HRQoL again on the assumption that someone would take over their caregiving activities completely and free of charge. Finally, the parents classified their HRQoL on the EQ-5D. The caregivers' scores on the EQ-VAS and the EQ-5D were compared with scores elicited in the general population. RESULTS: Most parents indicated that their HRQoL would not change if someone else took on their caregiving activities. Some methodological issues may have influenced this outcome, such as difficulties in self-assessing HRQoL changes due to caregiving, process utility, protest answers, and difficulties in understanding the hypothetical question. The HRQoL of the parents was relatively low compared with population statistics, especially in the parents of children with ARM and in mothers. This can be illustrated by the difference between the mean EQ-5D score of the mothers aged 25-34 years of the children with ARM and that of the general population (0.83 vs. 0.93; P = 0.002). CONCLUSIONS: Significant HRQoL differences exist between parents caring for children with congenital anomalies and the general population. It would be useful to further improve our understanding of the HRQoL impact of informal caregiving, separating 'caregiving effects' from 'family effects', and distinguishing parent-child relationships from other caregiving situations. This study underlines the importance of considering caregivers, also in the context of economic evaluations. It indicates that general HRQoL measures, as used in patients, may be able to detect HRQoL effects in caregivers, which facilitates the incorporation in common economic evaluations of HRQoL effects in carers. Analysts and policy makers should be aware that if HRQoL improvement is an important aim, they should register HRQoL changes not only in patients but also in their caregivers.

Attitudes towards medication non-adherence in elderly kidney transplant patients: a Q methodology study.

BACKGROUND: Non-adherence to the post-transplant regime is a common problem in kidney transplant patients and may lead to rejection or even graft failure. This study investigated attitudes towards the post-transplant regime of immunosuppressive medication among the ever growing population of elderly kidney recipients. METHODS: Q methodology was used to explore attitude profiles. Participants (> 65 years) were asked to rank-order opinion statements on issues associated with (non-)adherence. The rankings were subject to by-person factor analysis, and the resulting factors were interpreted and described as attitudes. RESULTS: Twenty-six elderly renal transplant recipients participated in the study. All passed the Mini-Mental State Examination. Two attitude profiles were found: (i) satisfied and easy-going (attitude A), and (ii) reserved and concerned (attitude B). Elderly patients with attitude A want to enjoy the new life following their kidney transplant, are not very concerned about having to recommence dialysis, now and then even forget their regime, and do not really worry about it. Elderly patients with attitude B feel more insecure about their kidney transplant, are fairly concerned over issues like rejection or going back on dialysis, and try to adapt their way of life to the regime. One-third of these elderly patients forget their medication at least once a month, but there was no difference between attitude groups. CONCLUSIONS: Attitudes about the post-transplant regime differ among elderly patients, implying different needs for assistance, monitoring and risk of non-adherence to the regime. The proportion of elderly patients who forget their medication is considerable, but may be much higher among those with mild and severe cognitive limitations.

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.

Sustained informal care: the feasibility, construct validity and test-retest reliability of the CarerQol-instrument to measure the impact of informal care in long-term care.

OBJECTIVES: This study analyses feasibility, construct validity and test-retest reliability of the Care-related Quality of Life (CarerQol)-instrument among informal caregivers of long-term care (LTC) users. The CarerQol measures the impact of informal care by assessing happiness (CarerQol-VAS) and describing burden dimensions (CarerQol-7D). METHODS: Data was gathered among informal caregivers of patients obtaining day care or living in a LTC facility in the Netherlands with two questionnaires sent with a two-week interval (n test = 108, n retest = 100). Percentages of missing values indicated feasibility of the CarerQol. Construct validity assessed the extent to which differences in background characteristics were reflected in happiness scores (CarerQol-VAS) with univariate and multivariate statistics. Additionally, construct validity was tested with assessing the correlation between the CarerQol and the Self-Rated Burden (SRB) scale. Percentages of complete agreement between CarerQol scores at test and retest, Cohen's kappa coefficients (κ value) and Intraclass Correlation Coefficients (ICCs) were used to assess reliability. RESULTS: In this study, 3.7% was missing on the CarerQol. CarerQol-VAS was positively associated with caregivers' age and health, and negatively with SRB score. The percentage of complete agreement of CarerQol-VAS between the measure moments was 60% and between 76% and 96% for CarerQol-7D. κ value and ICC of CarerQol-VAS were 0.52 and 0.86, and ranged between 0.55 and 0.94 for CarerQol-7D. CONCLUSION: The CarerQol measures the impact of informal care among carers of LTC users in a feasible, valid and reliable way.

Lifetime health effects and medical costs of integrated stroke services - a non-randomized controlled cluster-trial based life table approach.

BACKGROUND: Economic evaluation of stroke services indicates that such services may lead to improved quality of life at affordable cost. The present study assesses lifetime health impact and cost consequences of stroke in an integrated service setting. METHODS: The EDISSE study is a prospective non-randomized controlled cluster trial that compared stroke services (n = 151 patients) to usual care (n = 187 patients). Health status and cost trial-data were entered in multi-dimensional stroke life-tables. The tables distinguish four levels of disability which are defined by the modified Rankin scale. Quality-of-life scores (EuroQoL-5D), transition and survival probabilities are based on concurrent Dutch follow-up studies. Outcomes are quality-adjusted life years lived and lifetime medical cost by disability category. An economic analysis compares outcomes from a successful stroke service to usual care, by bootstrapping individual costs and effects data from patients in each arm. RESULTS: Lifetime costs and QALYs after stroke depend on age-of-onset of first-ever stroke. Lifetime QALYs after stroke are 2.42 (90% CI - 0.49 - 2.75) for male patients in usual care and 2.75 (-0.61; 6.26) for females. Lifetime costs for men in the usual care setting are €39,335 (15,951; 79,837) and €42,944 (14,081; 95,944) for women. A comparison with the stroke service results in an ICER of €11,685 saved per QALY gained (€14,211 and €7,745 for men and women respectively). This stroke service is with 90% certainty cost-effective. CONCLUSIONS: Our analysis shows the potential of large health benefits and cost savings of stroke services, taking a lifetime perspective, also in other European settings.

Giving birth after caesarean: Identifying shared preferences among pregnant women using Q methodology.

BACKGROUND: Caesarean rates are rising worldwide, the main contributor being the elective repeat caesarean. During the past decades, rates of vaginal birth after caesarean dropped considerably. This requires insight in women's preferences regarding giving birth following a previous caesarean. AIM: To gain a better understanding of women's values and preferences regarding the upcoming birth following a previous caesarean. Using Q methodology, this study systematically explores and categorises their preferences. METHODS: Q methodology is an innovative research approach to explore and compare a variety of viewpoints on a certain subject. Thirty-one statements on birth after caesarean were developed based on the health belief model. Thirty-six purposively sampled pregnant women with a history of caesarean ranked these statements from least to most important. By-person factor analysis was used to identify patterns which, supplemented with interview data, were interpreted as preferences. FINDINGS: Three distinct preferences for giving birth after a caesarean were found; (a) "Minimise the risks for me and my child", giving priority to professional advice and risk of adverse events, (b) "Seek the benefits of normal birth", desiring to give birth as normal as possible for both emotional and practical reasons, (c) "Opt for repeat caesarean", expressing the belief that a planned caesarean brings comfort. CONCLUSIONS: Preferences for birth after caesarean vary considerably among pregnant women. The findings help to understand the different types of information valued by women who need to decide on their mode of birth after a first caesarean.

Back to the Consideration of Future Consequences Scale: time to reconsider?

The Consideration of Future Consequences (CFC) Scale is a measure of the extent to which individuals consider and are influenced by the distant outcomes of current behavior. In this study, the authors conducted factor analysis to investigate the factor structure of the 12-item CFC Scale. The authors found evidence for a multiple factor solution including one completely present-oriented factor consisting of all 7 present-oriented items, and one or two future-oriented factors consisting of the remaining future-oriented items. Further evidence indicated that the present-oriented factor and the 12-item CFC Scale perform similarly in terms of internal consistency and convergent validity. The structure and content of the future-oriented factor(s) is unclear. From the findings, the authors raise questions regarding the construct validity of the CFC Scale, the interpretation of its results, and the usefulness of the CFC scale in its current form in applied research.

Q-methodology to identify young adult renal transplant recipients at risk for nonadherence.

BACKGROUND: Young adult renal transplant recipients may display patterns of behavior that affect graft survival. The present study aimed to identify young adults at risk for nonadherent behavior by investigating their attitudes about posttransplant health lifestyle. METHOD: A Q-methodological study was conducted. Participants were asked to rank-order statements on issues potentially associated with (non)adherence. Factor analysis was applied to uncover patterns in the ranking of statements. The resulting factors represent attitudes and are described using a composite ranking of the statements. As a first test of discriminated validity, a different group of 34 young renal transplant patients was asked how well the factor descriptions fitted them. RESULTS: Twenty-six young renal transplant recipients (18-25 years) participated in the study. They were remarkably willing to discuss sensitive issues when confronted with statements on cards. Four distinct attitude profiles concerning posttransplant health lifestyle were found among these young adults: (a) concerned and controlled, (b) appearance orientated, (c) opinionated and independent, and (d) easy going and pliable. In a follow-up analysis, self-categorization proved to discriminate well between the four attitude profiles in 67% of the respondents. CONCLUSIONS: Using Q-methodology, four attitude profiles about posttransplant health lifestyle were uncovered. Self-categorization on these attitudes seems feasible and may be a useful screening aid to identify young adults at risk for nonadherence.

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.

Unrelated medical costs in life-years gained: should they be included in economic evaluations of healthcare interventions?

Which costs and benefits to consider in economic evaluations of healthcare interventions remains an area of much controversy. Unrelated medical costs in life-years gained is an important cost category that is normally ignored in economic evaluations, irrespective of the perspective chosen for the analysis. National guidelines for pharmacoeconomic research largely endorse this practice, either by explicitly requiring researchers to exclude these costs from the analysis or by leaving inclusion or exclusion up to the discretion of the analyst. However, the inclusion of unrelated medical costs in life-years gained appears to be gaining support in the literature.This article provides an overview of the discussions to date. The inclusion of unrelated medical costs in life-years gained seems warranted, in terms of both optimality and internal and external consistency. We use an example of a smoking-cessation intervention to highlight the consequences of different practices of accounting for costs and effects in economic evaluations. Only inclusion of all costs and effects of unrelated medical care in life-years gained can be considered both internally and externally consistent. Including or excluding unrelated future medical costs may have important distributional consequences, especially for interventions that substantially increase length of life. Regarding practical objections against inclusion of future costs, it is important to note that it is becoming increasingly possible to accurately estimate unrelated medical costs in life-years gained. We therefore conclude that the inclusion of unrelated medical costs should become the new standard.

Building quality report cards for geriatric care in The Netherlands: using concept mapping to identify the appropriate "building blocks" from the consumer's perspective.

PURPOSE: This article reports on a study to identify "building blocks" for quality report cards for geriatric care. Its aim is to present (a) the results of the study and (b) the innovative step-by-step approach that was developed to arrive at these results. DESIGN AND METHODS: We used Concept Mapping/Structured Conceptualization to define the building blocks. Applied to this study, we carried out Concept Mapping using several data collection methods: (a) a Web search, (b) semistructured interviews, (c) document analysis, (d) questionnaires, and (e) focus groups. RESULTS: The findings showed that, although home care and institutional care for elderly adults share many quality themes, experts need to develop separate quality report cards for the two types of geriatric care. Home care consumers attach more value to the availability, continuity, and reliability of care, whereas consumers of institutional care value privacy, respect, and autonomy most. This study also showed, unlike many other quality report card studies, that consumers want information on structure, process and outcome indicators, and rating outcome indicators such as effectiveness and safety of care both for home care and for institutional care. Concept Mapping proved to be a valuable method for developing quality report cards in health care. IMPLICATIONS: Building blocks were delivered for two quality report cards for geriatric care and will be used when quality report cards are built in The Netherlands. For the U.S. context, this study shows that current national report cards for geriatric care should be supplemented with quality-of-life data.

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.

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.

Process utility from providing informal care: the benefit of caring.

Though economics is usually outcome-oriented, it is often argued that processes matter as well. Utility is not only derived from outcomes, but also from the way this outcome is accomplished. Providing care on a voluntary basis may especially be associated with such process utility. In this paper, we discuss the process utility from providing informal care. We test the hypothesis that informal caregivers derive utility not only from the outcome of informal care, i.e. that the patient is adequately cared for, but also from the process of providing informal care. We present empirical evidence of process utility on the basis of a large sample of Dutch caregivers (n=950). We measure process utility as the difference in happiness between the current situation in which the care recipient is cared for by the caregiver and the hypothetical situation that someone else takes over the care tasks, all other things equal. Other background characteristics on patient and caregiver characteristics, objective and subjective caregiver burden and quality of life are also presented and related to process utility. Our results show that process utility exists and is substantial and therefore important in the context of informal care. Almost half of the caregivers (48.2%) derive positive utility from informal care and on average happiness would decline if informal care tasks were handed over to someone else. Multivariate regression analysis shows that process utility especially relates to caregiver characteristics (age, gender, general happiness, relation to patient and difficulties in performing daily activities) and subjective caregiver burden, whereas it also depends on the number of hours of care provided (objective burden). These results strengthen the idea of supporting the use of informal care, but also that of keeping a close eye on the position of carers.

What Influences Patients' Decisions When Choosing a Health Care Provider? Measuring Preferences of Patients with Knee Arthrosis, Chronic Depression, or Alzheimer's Disease, Using Discrete Choice Experiments.

OBJECTIVE: To investigate what influences patients' health care decisions and what the implications are for the provision of information on the quality of health care providers to patients. DATA SOURCES/STUDY SETTING: Dutch patient samples between November 2006 and February 2007. STUDY DESIGN: Discrete choice experiments were conducted in three patient groups to explore what influences choice for health care providers. DATA COLLECTION: Data were obtained from 616 patients with knee arthrosis, 368 patients with chronic depression, and 421 representatives of patients with Alzheimer's disease. PRINCIPAL FINDINGS: The three patients groups chose health care providers on a different basis. The most valued attributes were effectiveness and safety (knee arthrosis); continuity of care and relationship with the therapist (chronic depression); and expertise (Alzheimer's disease). Preferences differed between subgroups, mainly in relation to patients' choice profiles, severity of disease, and some background characteristics. CONCLUSIONS: This study showed that there is substantial room for (quality) information about health care providers in patients' decision processes. This information should be tailor-made, targeting specific patient segments, because different actors and factors play a part in their search and selection process.

Discounting in decision making: the consistency argument revisited empirically.

Discounting is one of the prominent topics of debate in health economics. While the standard practice in economic evaluation is to discount costs and effects alike with a 3-5% discount rate, many have raised questions about this practice. The debate sometimes seems trapped in Weinstein and Stason's consistency argument. In this paper, we use a set of health care programs--resembling Weinstein and Stason's hypothetical programs--to test whether appointed societal decision makers are consistent in their preferences over present and future costs and health effects, and whether they discount costs and effects at the same rate. Our results demonstrate these appointed decision makers to be fairly inconsistent on both issues, susceptible to the framing of problems and in part myopic. In other words, our respondents appear to be incapable of providing reasonable and consistent preferences between present and future costs, and health effects for use in economic evaluations. There is some support for the idea that rather than using constant and identical rates for costs and effects, real differences in health endowment over time (the growth rate for health) could serve as a basis for discount rates. Our respondents seem to relate their discount rate for health to their expectations about future life expectancy, but this also is dependent on the elicitation method.

GET MORE, PAY MORE? An elaborate test of construct validity of willingness to pay per QALY estimates obtained through contingent valuation.

Estimates of WTP per QALY can be taken as an indication of the monetary value of health gains, which may carry information regarding the appropriate height of the cost-effectiveness threshold. Given the far-reaching consequences choosing a particular threshold, and thus the potential relevance of WTP per QALY estimates, it is important to address the validity of these estimates. This study addresses this issue. Our findings offer little support to the validity of WTP per QALY estimates obtained in this study. Implications for general WTP per QALY estimates and further research are discussed.