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    <title>Exel, N.J.A. van</title>
    <link>http://repub.eur.nl/res/aut/7447/</link>
    <description>List of Publications</description>
    <language>en</language>
    <image>
      <url>http://repub.eur.nl/static-eur/img/logo.png</url>
      <title>RePub, Erasmus University Rotterdam</title>
      <link>http://repub.eur.nl</link>
    </image>
    <item>
      <title>Your Right Arm For A Publication In Aer? (Article)</title>
      <link>http://repub.eur.nl/res/pub/39674/</link>
      <pubDate>2013-03-28T00:00:00Z</pubDate>
      <description>The time tradeoff (TTO) method is popular in medical decision making for valuing health states. We use it to elicit economists' preferences for publishing in top economic journals and for living without limbs. The economists value journal publications highly and have a clear preference among them, with the American Economic Review (AER) the most preferred. Their responses imply they would sacrifice more than half a thumb for an AER publication. These TTO results are consistent with ranking and willingness to pay results, and indicate that journal preferences are not entirely determined by impact factors or by expectations of a salary increase following a publication in a prestigious journal. </description>
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      <title>Balancing equity and efficiency in the Dutch basic benefits package using the principle of proportional shortfall (Article)</title>
      <link>http://repub.eur.nl/res/pub/31072/</link>
      <pubDate>2013-02-01T00:00:00Z</pubDate>
      <description>Economic evaluations are increasingly used to inform decisions regarding the allocation of scarce health care resources. To systematically incorporate societal preferences into these evaluations, quality-adjusted life year gains could be weighted according to some equity principle, the most suitable of which is a matter of frequent debate. While many countries still struggle with equity concerns for priority setting in health care, the Netherlands has reached a broad consensus to use the concept of proportional shortfall. Our study evaluates the concept and its support in the Dutch health care context. We discuss arguments in the Netherlands for using proportional shortfall and difficulties in transitioning from principle to practice. In doing so, we address universal issues leading to a systematic consideration of equity concerns for priority setting in health care. The article thus has relevance to all countries struggling with the formalization of equity concerns for priority setting. </description>
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      <title>Inquiry into the relationship between equity weights and the value of the QALY (Article)</title>
      <link>http://repub.eur.nl/res/pub/38876/</link>
      <pubDate>2012-12-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Putting your money where your mouth is: Parents' valuation of good oral health of their children (Article)</title>
      <link>http://repub.eur.nl/res/pub/37637/</link>
      <pubDate>2012-12-01T00:00:00Z</pubDate>
      <description>The aim of this study was to investigate the parental willingness to invest in good oral health for their child in terms of money and time and to relate this to oral health related knowledge and behavioral aspects. 290 parents of 6-year-old children, participating in a RCT on caries preventive strategies in the Netherlands were asked to provide information on education, oral health habits, dietary habits, knowledge on dental topics, willingness to pay and perceived resistance against investing in preventive oral health actions for their children. Despite the fact that parents overall valued oral health for their child highly, still 12% of the parents were unwilling to spend any money, nor to invest any time by brushing their children's teeth to maintain good oral health for their child. Additionally, they indicated that they were unwilling to visit the dentist for preventive measures more than once a year. These children may certainly be considered at higher risk of developing oral diseases because worse oral hygiene habits and dietary habits were found in this group. Given the results, it may be necessary to differentiate in allocating caries prevention programmes to target parents or (school-based) children directly. </description>
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      <title>Assessing health-related quality-of-life changes in informal caregivers: An evaluation in parents of children with major congenital anomalies (Article)</title>
      <link>http://repub.eur.nl/res/pub/31141/</link>
      <pubDate>2012-06-01T00:00:00Z</pubDate>
      <description>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' scoresonthe 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. </description>
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      <title>Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (Article)</title>
      <link>http://repub.eur.nl/res/pub/34706/</link>
      <pubDate>2012-04-30T00:00:00Z</pubDate>
      <description>Purpose: To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden. Methods: In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients' level of subjective caregiver burden was measured with the Caregiver Strain Index (CSI) and the Self Rated Burden Scale. A visual analogue scale was used to measure happiness. The expanded CSI version, the CarerQoL and open questions were used to analyse caregiving in more depth. In uni and multivariate analyses, associations of objective care characteristics, patient characteristics and caregiver characteristics with burden were explored. Results: Parents indicated substantial burden, but valued giving care as being important and rewarding. Subjective burden was associated with received support, tracheotomy, active coping by the patient and anxiety in patient and parents, together explaining 34%36% of variance. Living situation was not associated with experienced burden. Conclusions: Caring for an adult son with DMD is burdensome, but rewarding. Subjective caregiver burden of parents may be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping by the patient from childhood. Implications for Rehabilitation Parents of adult patients with Duchenne Muscular Dystrophy experience substantial subjective caregiver burden, but they also value caregiving as important and rewarding. Level of subjective caregiver burden in parents is associated with support, tracheotomy, active coping by the patient and anxiety both in patients and parents. Subjective caregiver burden might be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping. </description>
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      <title>Real-life costs and effects of an implementation program to increase thrombolysis in stroke (Article)</title>
      <link>http://repub.eur.nl/res/pub/38079/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>Objectives: We have shown that a Breakthrough Series–based implementation program increases
the number of patients with acute ischemic stroke treated with alteplase 4.5% in real-life settings.
It is unclear whether such an implementation program is cost-effective.
Methods: The practice study includes 12 randomized hospitals and 5,515 patients. Its present
cost-effectiveness analysis involves 1,657 patients with ischemic stroke admitted within 4 hours
from onset. Defined primary outcomes are thrombolysis rate and actual health care costs up to 3
months, including additional implementation efforts. Secondary outcomes are lifetime qualityadjusted
years (QALYs) and lifetime costs of individual trial patients, using a validated probabilistic,
disability-stratified stroke life table. Differences in outcome include95%confidence intervals
(CI), adjusted for intracluster correlation.
Results: The thrombolysis rate in the intervention group was 44.3% vs 39.8% in the control
group (difference 4.5%; 95% CI 3.1% to 5.9%. Mean costs per patient at 3 months (euros were
converted to 2010 USD) were $9,192 USD in the intervention group and $9,647 USD in the
control group (difference !$455 USD; 95% CI !$232 to !$679 USD). Lifetime QALYs in the
intervention group were 3.89 and in the control group 3.84 (difference 0.05; 95% CI !0.04 to
0.14). The mean lifetime costs in the intervention group were $22,994 USD against $24,315
USD in the control group (difference !$1,321 USD; 95% CI !$1,722 to !$921 USD).
Conclusions: A Breakthrough Series implementation program of thrombolysis increases thrombolysis.
It saves short- and long-term health care costs due to lower hospital admission and residential
costs, increasing stroke care efficiency.</description>
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      <title>Een gepaste waarde van gezondheid (Article)</title>
      <link>http://repub.eur.nl/res/pub/38888/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>Gepaste zorg kan alleen worden vastgesteld wanneer de
waarde van gezondheid bekend is. Daarover bestaat nog veel
onduidelijkheid. Het blijft dan ook van belang de wetenschappelijke
zoektocht naar en het maatschappelijke debat
over de waarde van gezondheid open en gericht te blijven
voeren.</description>
    </item> <item>
      <title>Coping with caring: Profiles of caregiving by informal carers living with a loved one who has dementia (Article)</title>
      <link>http://repub.eur.nl/res/pub/34702/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>Background and aim: While the number of people suffering from dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has dementia experience their caregiving situation.Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements.Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers.Conclusions: The findings contribute to the development of interventions for the support of informal caregivers. </description>
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      <title>Does the EQ-5D Reflect Lost Earnings? (Article)</title>
      <link>http://repub.eur.nl/res/pub/34705/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>Background: An important methodological issue in economic evaluations of
healthcare is how to include productivity costs (the costs related to reduced
productivity due to illness, disability and premature death). Traditionally,
they were included in the numerator of a cost-effectiveness analysis, through
either the human-capital or the friction-cost method. It has been argued,
however, that productivity costs are already included in the denominator (i.e.
in the QALY measure) because respondents consider the effect a given health
state will have on their income when valuing health states. If that is the case,
many previous economic evaluations might have double counted productivity
costs by including them in both the numerator and the denominator.
Aim: The aim of this study was to determine whether respondents valuing
EQ-5D health states using the time trade-off (TTO) method spontaneously
consider income effects, whether this consideration influences subsequent
valuations and whether explicit ex post instructions influence valuations.
Methods: Through an online survey, we asked 321 members of the Dutch
general population to value four EQ-5D health states through three different
TTO exercises. The first exercise was a standard TTO question. Respondents
were then asked whether they had included income effects. Depending on
their answer, the second TTO exercise instructed them to either include or
exclude income effects. The third TTO exercise provided explicit information
regarding the income loss associated with the health state.
Results: Data were available from 321 members of the Dutch general public. Of
these respondents, 49% stated they had spontaneously included income effects.
Twenty-five percent of the sample did not trade any time in any of the TTO
exercises and these respondents were excluded from the analysis. Results of
t-tests showed there were only weakly significant differences in valuations for
one health state between those who spontaneously included income effects and
those who did not. Explicit instruction led to some significant differences at the
aggregate level, but the effect was inconsistent at the individual level. When
explicit information on the amount of income loss was provided, all states were
valued lower when associated with a larger income loss.</description>
    </item> <item>
      <title>GET MORE, PAY MORE? An elaborate test of construct validity of willingness to pay per QALY estimates obtained through contingent valuation (Article)</title>
      <link>http://repub.eur.nl/res/pub/34722/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Real-life costs and effects of an implementation program to increase thrombolysis in stroke (Article)</title>
      <link>http://repub.eur.nl/res/pub/37213/</link>
      <pubDate>2012-01-01T00:00:00Z</pubDate>
      <description>Objectives: We have shown that a Breakthrough Series–based implementation program increases
the number of patients with acute ischemic stroke treated with alteplase 4.5% in real-life settings.
It is unclear whether such an implementation program is cost-effective.
Methods: The practice study includes 12 randomized hospitals and 5,515 patients. Its present
cost-effectiveness analysis involves 1,657 patients with ischemic stroke admitted within 4 hours
from onset. Defined primary outcomes are thrombolysis rate and actual health care costs up to 3
months, including additional implementation efforts. Secondary outcomes are lifetime qualityadjusted
years (QALYs) and lifetime costs of individual trial patients, using a validated probabilistic,
disability-stratified stroke life table. Differences in outcome include95%confidence intervals
(CI), adjusted for intracluster correlation.
Results: The thrombolysis rate in the intervention group was 44.3% vs 39.8% in the control
group (difference 4.5%; 95% CI 3.1% to 5.9%. Mean costs per patient at 3 months (euros were
converted to 2010 USD) were $9,192 USD in the intervention group and $9,647 USD in the
control group (difference !$455 USD; 95% CI !$232 to !$679 USD). Lifetime QALYs in the
intervention group were 3.89 and in the control group 3.84 (difference 0.05; 95% CI !0.04 to
0.14). The mean lifetime costs in the intervention group were $22,994 USD against $24,315
USD in the control group (difference !$1,321 USD; 95% CI !$1,722 to !$921 USD).
Conclusions: A Breakthrough Series implementation program of thrombolysis increases thrombolysis.
It saves short- and long-term health care costs due to lower hospital admission and residential
costs, increasing stroke care efficiency.</description>
    </item> <item>
      <title>A new test of the construct validity of the CarerQol instrument: Measuring the impact of informal care giving (Article)</title>
      <link>http://repub.eur.nl/res/pub/31081/</link>
      <pubDate>2011-08-01T00:00:00Z</pubDate>
      <description>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. </description>
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      <title>"I can do perfectly well without a car!": An exploration of stated preferences for middle-distance travel (Article)</title>
      <link>http://repub.eur.nl/res/pub/25747/</link>
      <pubDate>2011-05-01T00:00:00Z</pubDate>
      <description>This article presents the results of a study exploring travellers' preferences for middle-distance travel using Q-methodology. Respondents rank-ordered 42 opinion statements regarding travel choice and motivations for travel in general and for car and public transport as alternative travel modes. By-person factor analysis revealed four distinct preference segments for middle-distance travel: (1) choice travellers with a preference for public transport, (2) deliberate-choice travellers, (3) choice travellers with car as dominant alternative, and (4) car-dependent travellers. These preference segments differ in terms of the levels of involvement and cognitive effort in travel decision making, the travel consideration-set and underlying motivations. The study showed that for most people there is more to travel than getting from point A to point B, and that there is considerable heterogeneity in middle-distance travel preferences. </description>
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      <title>Attitudes towards medication non-adherence in elderly kidney transplant patients: A Q methodology study (Article)</title>
      <link>http://repub.eur.nl/res/pub/25808/</link>
      <pubDate>2011-05-01T00:00:00Z</pubDate>
      <description>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 (&gt; 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. </description>
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      <title>Perceptions of team workers in youth care of what makes teamwork effective (Article)</title>
      <link>http://repub.eur.nl/res/pub/25913/</link>
      <pubDate>2011-05-01T00:00:00Z</pubDate>
      <description>In youth care, little is known about what makes teamwork effective. What is known mostly reflects the view of managers in care organisations, as objective outcome measures are lacking. The objective of this article was to explore the views of youth care workers in different types of teams on the relative importance of characteristics of teamwork for its effectiveness. Q methodology was used. Fifty-one respondents rank-order 34 opinion statements regarding characteristics of teamwork. Individual Q sorts were analysed using by-person factor analysis. The resulting factors, which represented team workers' views of what is important for effective teamwork, were interpreted and described using composite rankings of the statements for each factor and corresponding team workers' explanations. We found three views of what makes teamwork effective. One view emphasised interaction between team members as most important for team effectiveness. A second view pointed to team characteristics that help sustain communication within teams as being most important. In the third view, the team characteristics that facilitate individuals to perform as a team member were put forward as most important for teamwork to be effective. In conclusion, different views exist on what makes a team effective in youth care. These views correspond with the different types of teams active in youth care as well as in other social care settings. </description>
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      <title>Health effects in significant others: Separating family and care-giving effects (Article)</title>
      <link>http://repub.eur.nl/res/pub/26513/</link>
      <pubDate>2011-03-01T00:00:00Z</pubDate>
      <description>Background. Changes in the health of patients may affect the health of so-called "significant others" in 2 distinct ways. First, an individual may provide informal care to the patient and be burdened by the process of care giving. We label this indirect effect of a patient's health on the health of the care giver the "care-giving effect." Second, a person may suffer from health losses because someone in his or her social environment is ill, regardless of his or her care-giving status. The health of the patient then directly affects the health of this significant other, which we label the "family effect." Methods. We investigate the occurrence of the family and care-giving effect in a convenience sample of Dutch care givers (n = 751). The family effect was approximated by the health status of the patient (measured on EuroQol-VAS), and the caregiving effect by the number of the care-giving tasks was provided. It was assumed that care givers' health is positively associated with patients' health, that is, the family effect, and negatively associated with care-giving burden, that is, the care-giving effect. Relationships are studied using multivariate regressions. Results. Our results support the existence of both types of health effects. The analysis shows that the 2 effects are separable and independently associated with the health of care givers. Not accounting for the family effect conflates the care-giving effect. Conclusions. If the goal of health care policy is to optimize health, all important effects should be captured. The scope of economic evaluations should also include health effects in significant others. This study suggests that significant others include both care givers and broader groups of affected individuals, such as family members.</description>
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      <title>Measuring health and well-being effects in family caregivers of children with craniofacial malformations (Article)</title>
      <link>http://repub.eur.nl/res/pub/23248/</link>
      <pubDate>2011-02-25T00:00:00Z</pubDate>
      <description>Purpose: This research explores the sensitivity of three generic instruments for preference-weighting health states of family caregivers of children with craniofacial malformations (CFM). We also examine the construct validity of the new CarerQol instrument measuring caregiver burden and general quality of life. Methods: Caregivers of children born with CFM were identified through the Arkansas Reproductive Health Monitoring System. A mailed survey included the HUI3, the SF-6D, the QWB-SA to measure health-related quality of life; the CES-D measuring depressive symptoms as well as the SRB scale, and the CarerQol. The HUI3, the SF-6D, and the QWB-SA were examined in relation to the CES-D the SRB, the CarerQol, and each other. Results: A total of 65 (63%) parents of children (≤17 years) responded. The mean SF-6D, HUI3, and QWB-SA scores were 0.81 (SD = 0.13), 0.84 (SD = 0.23), and 0.67 (SD = 0.14), respectively. The mean CES-D score was 13.3 (SD = 13.4) and 28.6% of the sample met a threshold for depressive symptoms (CES-D ≥ 16). The mean CarerQol-VAS and SRB scores were 7.5 (SD = 2.3) and 15.1 (SD = 23.5), respectively. The Spearman correlations (ρ) of the HUI3 and the SF-6D with the CES-D were similar (-0.81 and -0.76) while the ρ was lower (-0.57) for the QWB-SA. Preference-weighted scores of caregivers with CES-D scores ≥ 16 differed significantly for both the SF-6D and the HUI3, but not the QWB-SA. All three generic instruments showed moderate to strong relationships with the CarerQol. Conclusions: The HUI3 and SF-6D were more sensitive predictors of depressive symptoms in this caregiver sample than was the QWB-SA. The CarerQol showed good construct validity and may be useful for measuring well-being effects associated with caregiving.</description>
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      <title>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 (Article)</title>
      <link>http://repub.eur.nl/res/pub/31862/</link>
      <pubDate>2011-01-01T00:00:00Z</pubDate>
      <description>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 (kappa 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. kappa 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.</description>
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      <title>Piecing the jigsaw puzzle of adolescent happiness (Article)</title>
      <link>http://repub.eur.nl/res/pub/21752/</link>
      <pubDate>2010-12-01T00:00:00Z</pubDate>
      <description>Happiness is increasingly recognized as a proxy for utility and therefore a valuable maximand for policy decisions. As a result many studies have investigated happiness and the associated determinants in both overall and specific life domains. Adolescent happiness, however, remains largely unexplored. The aim of this study is to explore the relative importance of happiness of young Dutch adolescents at home, school, and leisure, and their associations with a broad array of personal and context characteristics within each of these domains. We used data from a study which investigated adolescents' health behaviour in relation to their attitudes regarding health and lifestyle as well as their considerations and expectations regarding the future consequences of their behaviour (n= 1436). Variables were selected on the basis of findings in the literature or significant univariate Pearson correlations between the variable and domain-specific or overall happiness. The data was analysed using multiple hierarchical stepwise regressions. In line with international findings, most adolescents reported high levels of overall happiness with a mean score of 7.69 (SD = 1.23) on a scale from 0 to 10. Personal and context characteristics were associated with adolescent overall happiness either directly or indirectly, via domain-specific happiness. Happiness at home, at school, and during leisure hours contributed approximately equally to overall happiness but were associated with different characteristics. Finally, the results demonstrate that adolescents differentiate their happiness levels between life domains, which support the relevance of a multidimensional approach in happiness studies. This study provides additional insight over single-dimensional studies of happiness and a more comprehensive explanation of previously published findings.</description>
    </item> <item>
      <title>Lifetime health effects and medical costs of integrated stroke services - a non-randomized controlled cluster-trial based life table approach (Article)</title>
      <link>http://repub.eur.nl/res/pub/24001/</link>
      <pubDate>2010-11-17T00:00:00Z</pubDate>
      <description>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. </description>
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      <title>Perceptions of public transport travel time and their effect on choice-sets among car drivers (Article)</title>
      <link>http://repub.eur.nl/res/pub/23335/</link>
      <pubDate>2010-11-01T00:00:00Z</pubDate>
      <description>Car drivers' perceptions of the quality of alternative travel modes have been identified as a barrier for including these alternatives in their choice sets. The present study investigated the accuracy of car drivers' perceptions of public transport (PT) travel time and the potential effect of these perceptions on choice sets. A sample of car drivers was intercepted on the main corridors to Amsterdam, the
Netherlands, using video recognition of license plates, and was sent a questionnaire asking (among other questions) whether they could have made the specific trip by PT and their estimate of the door-to-door travel time by PT. Objective travel times were obtained from route-planning software. 21,335 questionnaires (31%) were returned. About 10 percent did not report PT travel time for their car trip, largely car drivers who did not perceive PT as an alternative. The mean ratio of perceived travel time by PT to
reported travel time by car was 1 : 2.3. About half the difference was due to distorted perceptions, and
the ratio reported depended strongly on their PT use. Analysis of associations between choice set and
characteristics of traveler and trip showed that if perceived PT travel times were more accurate a substantial
number of car drivers would include PT in their choice set. Actual changes in behavior might be much smaller.</description>
    </item> <item>
      <title>Patient views on determinants of compliance with tuberculosis treatment in the Eastern Cape, South Africa: An application of Q-methodology (Article)</title>
      <link>http://repub.eur.nl/res/pub/20047/</link>
      <pubDate>2010-07-06T00:00:00Z</pubDate>
      <description>Background: Tuberculosis (TB) constitutes one-quarter of all avoidable deaths in developing countries. In the Eastern Cape, South Africa, TB is a public health problem of epidemic proportion. Poor compliance and frequent interruption to treatment are associated with increased transmission rates, morbidity, and costs to TB control programs. This study explored determinants of (non-)compliance from the patients perspective. Methods: Semi-structured interviews were conducted with patients (33 treatment compliers and 34 treatment non-compliers) and 14 community health workers from local community clinics and the hospital in the township of Grahamstown, Eastern Cape, South Africa. Q-methodology was used. Patients rank ordered 32 opinion statements describing determinants of treatment compliance fromthe TB adherencemodel. By-person factor analysis was used to explore patterns in the rankings of statements by compliers and non-compliers. These patterns were interpreted and described as patient views on determinants of compliance with treatment. Patients and community health workers selected the top five determinants of compliance and non-compliance. Results: Compliers believed that completing treatment would cure them of B. Economic prospects were crucial for compliance. Compliers felt that the support of the government disability grant helped with compliance. Noncompliers believed that stigmatization had the greatest impact on noncompliance, together with the burden of disease, the arrangements involved ith receiving treatment, restrictions accompanying treatment, and the association of TB with HIV/AIDS infection. Conclusions: Stigmatization makes TB a 'social disease'. Individual motivation and self-efficacy appear to have a considerable effect on compliance, but, for non-compliers, the general lack of job prospects and being able to provide for themselves or their family also makes TB very much an 'economic disease'.</description>
    </item> <item>
      <title>Caring for and caring about: Disentangling the caregiver effect and the family effect (Article)</title>
      <link>http://repub.eur.nl/res/pub/20228/</link>
      <pubDate>2010-07-01T00:00:00Z</pubDate>
      <description>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.</description>
    </item> <item>
      <title>The value of informal care - A further investigation of the feasibility of contingent valuation in informal caregivers (Article)</title>
      <link>http://repub.eur.nl/res/pub/28344/</link>
      <pubDate>2010-07-01T00:00:00Z</pubDate>
      <description>Including informal care in economic evaluations is increasingly advocated but problematic. We investigated three well-known concerns regarding contingent valuation (CV): (1) the item non-response of CV values, (2) the sensitivity of CV values to the individual circumstances of caring, and (3) the choice of valuation method by comparing willingness-to-pay (WTP) and willingness-to-accept (WTA) values for a hypothetical marginal change in hours of informal care currently provided. The study sample consisted of 1453 caregivers and 787 care recipients. Of the caregivers, 603 caregivers (41.5%) provided both WTP and WTA values, 983 (67.7%) provided at least one. Determinants of non-response were dependent on the valuation method; primary determinants were education and satisfaction with amount of informal care provided. Caregivers' mean WTP (WTA) for reducing (increasing) informal care by 1 h was €9.13 (10.52). Care recipients' mean WTA (WTP) for reducing (increasing) informal care by 1 h was €8.88 (€6.85). Values were associated with a variety of characteristics of the caregiving situation; explanatory variables differed between WTP and WTA valuations. The differences between WTP and WTA valuations were small. Based on sensitivity CV appears to be a useful method to value informal care for use in economic evalations, non-response, however, remains a matter of concern. Copyright </description>
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      <title>Between Trust and Accountability: Different Perspectives on the Modernization of Postgraduate Medical Training in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/23156/</link>
      <pubDate>2010-06-01T00:00:00Z</pubDate>
      <description>Abstract. PURPOSE: Postgraduate medical training was reformed to be more responsive to changing societal needs. In the Netherlands, as in various other Western countries, a competency-based curriculum was introduced reflecting the clinical and nonclinical roles a modern doctor should fulfill. It is still unclear, however, what this modernization process exactly comprises and what its consequences might be for clinical practice and medical work.
METHOD: The authors conducted a Q methodological study to investigate which different perspectives exist on the modernization of postgraduate medical training among actors involved.
RESULTS: The authors found four distinct perspectives, reflecting the different features of medical training. The accountability perspective stresses the importance of formal regulations within medical training and the monitoring of results in order to be more transparent and accountable to society. According to the educational perspective, medical training should be more formalized and directed at the educational process. The work-life balance perspective stresses the balance between a working life and a private life, as well as the changing professional relationship between staff members and residents. The trust-based perspective reflects the classic view of medical training in which role modeling and trust are considered most important.
CONCLUSIONS: The four perspectives on the modernization of postgraduate medical training show that various aspects of the modernization process are valued differently by stakeholders, highlighting important sources of agreement and disagreement between them. An important source of disagreement is diverging expectations of the role of physicians in modern medical practice.</description>
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      <title>Predictors of Long-Term Care Utilization by Dutch Hospital Patients aged 65+ (Article)</title>
      <link>http://repub.eur.nl/res/pub/19994/</link>
      <pubDate>2010-05-06T00:00:00Z</pubDate>
      <description>Background
Long-term care is often associated with high health care expenditures. In the Netherlands, an ageing population will likely increase the demand for long-term care within the near future. The development of risk profiles will not only be useful for projecting future demand, but also for providing clues that may prevent or delay long-term care utilization. Here, we report our identification of predictors of long-term care utilization in a cohort of hospital patients aged 65+ following their discharge from hospital discharge and who, prior to hospital admission, were living at home.

Methods
The data were obtained from three national databases in the Netherlands: the national hospital discharge register, the long-term care expenses register and the population register. Multinomial logistic regression was applied to determine which variables were the best predictors of long-term care utilization. The model included demographic characteristics and several medical diagnoses. The outcome variables were discharge to home with no formal care (reference category), discharge to home with home care, admission to a nursing home and admission to a home for the elderly.

Results
The study cohort consisted of 262,439 hospitalized patients. A higher age, longer stay in the hospital and absence of a spouse were found to be associated with a higher risk of all three types of long-term care. Individuals with a child had a lower risk of requiring residential care. Cerebrovascular diseases [relative risk ratio (RRR) = 11.5] were the strongest disease predictor of nursing home admission, and fractures of the ankle or lower leg (RRR = 6.1) were strong determinants of admission to a home for the elderly. Lung cancer (RRR = 4.9) was the strongest determinant of discharge to the home with home care.

Conclusions
These results emphasize the impact of age, absence/presence of a spouse and disease on long-term care utilization. In an era of demographic and epidemiological changes, not only will hospital use change, but also the need for long-term care following hospital discharge. The results of this study can be used by policy-makers for planning health care utilization services and anticipating future health care needs.</description>
    </item> <item>
      <title>Preferences for health care and self-management among Dutch adolescents with chronic conditions: A Q-methodological investigation (Article)</title>
      <link>http://repub.eur.nl/res/pub/23337/</link>
      <pubDate>2010-05-01T00:00:00Z</pubDate>
      <description>Background: Adolescents with chronic conditions have to learn to self-manage their health in preparation for transitioning to adult care. Nurses often struggle with how to approach youth with chronic conditions successfully. Little is known about the preferences and attitudes of these young people themselves.
Objective: To uncover preferences for self-management and hospital care of adolescents with various chronic conditions.
Design and method: A Q-methodological study was conducted. Semi-structured interviews were held with adolescents who rank-ordered 37 opinion statements on preferences for care delivery and self-management. They were asked to motivate their ranking. By-person factor analysis was conducted to uncover patterns in the rankings of statements. The factors were described as preference profiles. 
Participants and setting: A purposive sample of 66 adolescents (12–19 years) treated in a university children’s hospital in the Netherlands was invited to participate. Thirty-one adolescents, 16 boys and 15 girls with various chronic conditions eventually participated (response 47%). Eight participants (26%) had a recently acquired chronic condition, while the rest (74%) had been diagnosed at birth or in the first 5 years of life.
Results: Four distinct preference profiles for health care delivery and self-management were identified: ‘Conscious &amp; Compliant’; ‘Backseat Patient’; ‘Self-confident &amp; Autonomous’; and ‘Worried &amp; Insecure’. Profiles differ in the level of independence, involvement with self-management, adherence to therapeutic regimen, and appreciation of the parents’ and health care providers’ role. The desire to participate in treatment-related decisions is important to all preference profiles. The profiles are recognizable to adolescents and nurses alike. As Q-methodology allows no inferences with respect to the relative distribution of these profiles in a given population, only tentative hypotheses were formulated about associations between profiles and patient characteristics.
Conclusion: This study increases our understanding of different subjectivities of adolescents living with a chronic condition related to their treatment and health. There is no ‘‘one size fits all’’ approach to adolescent health care, but rather a limited number of distinct preference profiles. This study demonstrates the value of a non-disease-specific approach in that adolescents with various chronic conditions were found to have much in common. The profiles seem a promising tool for nurses to actively seek adolescents’ opinion and participation in health care and will be further explored.</description>
    </item> <item>
      <title>Het meten en waarderen van mantelzorg met de CarerQol (Article)</title>
      <link>http://repub.eur.nl/res/pub/23197/</link>
      <pubDate>2010-01-01T00:00:00Z</pubDate>
      <description>Een groot deel van de zorg aan hulpbehoevende personen in Nederland wordt verleend door personen uit de sociale
omgeving van hulpbehoevenden. Deze mantelzorg wordt niet verleend vanuit een beroep en is dan ook veelal onbetaald.
Familie en vrienden vinden het meestal vanzelfsprekend om te zorgen voor hun naaste. Bovendien geeft zorgen hen vaak voldoening. Echter, het verlenen van mantelzorg kan ook belastend zijn en zelfs tot gezondheidsschade leiden.
Vaak verrichten mantelzorgers verschillende, soms vrij moeilijke, zorgtaken gedurende meerdere uren per week voor een lange periode.</description>
    </item> <item>
      <title>Some pain, no gain: experiences with the no-claim rebate in the Dutch health care system (Article)</title>
      <link>http://repub.eur.nl/res/pub/19450/</link>
      <pubDate>2009-10-01T00:00:00Z</pubDate>
      <description>To contain expenditures in an increasingly demand driven health care system, in 2005 a no-claim rebate was introduced in the Dutch health insurance system. Since demand-side cost sharing is a very controversial issue, the no-claim rebate was launched as a consumer friendly bonus system to reward prudent utilization of health services. Internationally, the introduction of a mandatory no-claim rebate in a social health insurance scheme is unprecedented. Consumers were entitled to an annual rebate of 255 eruos if no claims were made. During the year, all health care expenses except for GP visits and maternity care were deducted from the rebate until the rebate became zero. In this article, we discuss the rationale of the no-claim rebate and the available evidence of its effect. Using a questionnaire in a convenience sample, we examined people's knowledge, attitudes, and sensitivity to the incentive scheme. We find that only 4% of respondents stated that they would reduce consumption because of the no-claim rebate. Respondents also indicated that they were willing to accept a high loss of rebate in order to use a medical treatment. However, during the last month of the year many respondents seemed willing to postpone consumption until the next year in order to keep the rebate of the current year intact. A small majority of respondents considered the no-claim rebate to be unfair. Finally, we briefly discuss why in 2008 the no-claim rebate was replaced by a mandatory deductible.</description>
    </item> <item>
      <title>Back to the Consideration of Future Consequences Scale: Time to Reconsider? (Article)</title>
      <link>http://repub.eur.nl/res/pub/22596/</link>
      <pubDate>2009-10-01T00:00:00Z</pubDate>
      <description>ABSTRACT: 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.</description>
    </item> <item>
      <title>"my Lung disease won't go away, it's there to stay": Profiles of adaptation to functional limitations in workers with asthma and COPD (Article)</title>
      <link>http://repub.eur.nl/res/pub/24222/</link>
      <pubDate>2009-09-01T00:00:00Z</pubDate>
      <description>Purpose Earlier research has shown that adaptation (i.e., the way in which employees cope with limitations resulting from their disease) is associated with sick leave. Our aim was to investigate signs of adequate or inadequate adaptation in employees with asthma and COPD. Methods A Q-methodological study was carried out among 34 workers with asthma or COPD. Results Four adaptation profiles were distinguished: the eager, the adjusted, the cautious, and the worried workers. The adaptation profiles provide insight into the different ways in which workers with asthma and COPD cope with their illness at work. Conclusions The adaptation profiles serve as a starting point for the design of appropriate (occupational) care. The eager workers experience little difficulties at work; the cautious workers may need assistance in learning how to accept their disease; the worried workers need reassurance, and may need reactivation; the adjusted workers deserve extra attention, and, when necessary, advice on how to live with their asthma or COPD.</description>
    </item> <item>
      <title>Back to the consideration of future consequences scale: Time to reconsider? (Article)</title>
      <link>http://repub.eur.nl/res/pub/25195/</link>
      <pubDate>2009-09-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>When strike comes to town... anticipated and actual behavioural reactions to a one-day, pre-announced, complete rail strike in the Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/15737/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>We conducted secondary analysis on data collected among rail users, days before and after a national rail strike in the Netherlands. Our aim was to compare anticipated and actual behavioural reactions to the rail strike, investigate associations with traveller and trip characteristics, and perceived behavioural control and satisfaction with the chosen alternative. Forty-four percent of the people who had anticipated to travel by train on the day of the strike abandoned their trip, 24% switched to car as driver, 14% switched to another mode (as passenger), 18% stayed with the train and rescheduled the planned activity to another day. Almost half of people who had anticipated travelling by car expected to change behaviour as well. Multinomial logistic regression showed low preference for car among rail users. Considerable marginal effects were found for several variables, e.g.: young people and females were less likely to switch to car; short and middle distance trips were less likely abandoned or switched to another day; commute and business trips were more likely done by car, and business trips less likely cancelled. Despite high levels of perceived behavioural control and satisfaction with the chosen alternative, permanent modal shift as result of this strike is not expected.</description>
    </item> <item>
      <title>How employment support and social integration programmes are viewed by the intellectually disabled (Article)</title>
      <link>http://repub.eur.nl/res/pub/24775/</link>
      <pubDate>2009-06-01T00:00:00Z</pubDate>
      <description>Background: Supported employment is intended to facilitate and promote participation and integration of intellectually disabled citizens in society. This study investigated their view of the programme. Methods: Q-methodology was used. Eighteen respondents with a mild intellectual disability rank-ordered 22 statements representing five main aspects of supported employment. The data were factor-analysed to group respondents according to their views. Q-methodology was a feasible approach that facilitated in-depth conversations with respondents with a mild intellectual disability in a playful manner. Results: Two views onthe impact of supported employment on social integration were observed: 'Work as participation' and 'work as structure'. The first placed greater value on participation, task variety, belonging, and feeling appreciated; the second placed greater value on working independently, clear working agreements, and friendly co-workers. The views indicate two distinct approaches to effecting a positive relationship between supported employment and social integration. Conclusion: From the perspective of people with an intellectual disability supported employment contributes to self-development and has a positive effect on well-being, albeit in different ways for the individual groups. © 2009 The Authors. Journal compilation </description>
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      <title>Could you also have made this trip by another mode? An investigation of perceived travel possibilities of car and train travellers on the main travel corridors to the city of Amsterdam, The Netherlands (Article)</title>
      <link>http://repub.eur.nl/res/pub/18264/</link>
      <pubDate>2009-05-01T00:00:00Z</pubDate>
      <description>We investigated perceived travel possibilities (or subjective choice-sets, consideration-sets) of car and train travellers on the main corridors to the city of Amsterdam, The Netherlands, and associations with traveller and trip characteristics. We conducted secondary analysis on a survey sample consisting of 7950 train and 19,232 car travellers. Forty-five percent of train travellers had a car in their objective choice-set, 27% of them would however never use it for this trip. Trip destination city centre, trip purpose, paying for the trip, public transport commitment, traffic congestion and parking problems were associated with consideration of car as alternative. Forty-two percent of car travellers had public transport in their subjective choice-set. The ratio between perceived public transport and objective car travel time stood out as determinant of consideration-sets, next to destination city centre, trip purpose, travel time and private versus company car ownership. On average, car travellers' perceptions of public transport travel time exceeded objective values by 46%. We estimated that if perceptions would be more accurate, two out of three car travellers that currently do not see public transport as an alternative would include it in their choice-set, and use it from time to time. This effect has strong theoretical and policy implications.</description>
    </item> <item>
      <title>The invisible hands made visible: Recognizing the value of informal care in healthcare decision-making (Article)</title>
      <link>http://repub.eur.nl/res/pub/32440/</link>
      <pubDate>2008-12-01T00:00:00Z</pubDate>
      <description>The healthcare sector depends heavily on the informal care provided by families and friends of those who are ill. Informal caregivers may experience significant burden as well as health and well-being effects. Resource allocation decisions, in particular from a societal perspective, should account explicitly for these effects in the social environment of patients. This is not only important to make a complete welfare economic assessment of treatments, but also to ensure the lasting involvement of informal caregivers in the care-giving process. Measurement and valuation techniques for the costs and effects of informal care have been developed and their use is becoming more common. Decision-makers in healthcare - and eventually families and patients - would be helped by more uniformity in methods. </description>
    </item> <item>
      <title>Economic valuation of informal care: Conjoint analysis applied in a heterogeneous population of informal caregivers (Article)</title>
      <link>http://repub.eur.nl/res/pub/30114/</link>
      <pubDate>2008-12-01T00:00:00Z</pubDate>
      <description>Objectives: This article reports the results of the application of conjoint analysis (CA) to derive a monetary value of informal care. Compared with normally recommended valuation methods such as the opportunity cost method and proxy good method, a valuation elicited through a CA might be more sensitive to the heterogeneity and dynamics of informal care. Methods: We developed a questionnaire and conducted a survey in which informal caregivers were asked to rate four different hypothetical informal caregiving situations (reflecting different combinations of care hours, care tasks, and monetary compensation). They were also asked to rate their current informal care situation compared with the four hypothetical situations. Data were obtained from postal questionnaires. These questionnaires were sent through regional support centres for informal caregivers of care recipients with various health problems. A total of 865 informal caregivers from this heterogeneous population returned a completed survey. Results: Informal caregivers require an increase of 81% in their hourly compensation for providing 21 instead of 7 hours informal care per week. This implies a compensation of €12.36 per hour at a mean hypothetical compensation in the presented scenarios. We also found that an informal caregiver's current caregiving situation and other background characteristics were associated with the scenario ratings. Conclusions: We conclude that a CA is a promising alternative for existing methods to determine a monetary value of informal care and encourage more experiments in this area. </description>
    </item> <item>
      <title>Give me a break!. Informal caregiver attitudes towards respite care (Article)</title>
      <link>http://repub.eur.nl/res/pub/29448/</link>
      <pubDate>2008-10-01T00:00:00Z</pubDate>
      <description>Background/objective: Because informal health care is now recognized to be indispensable to health care systems, different forms of respite care have been developed and publicly funded that supposedly alleviate caregivers' perceived burdens and help prolong the care giving task. Nonetheless, the use of respite care services is low even among substantially strained caregivers. To throw light on this low usage, this paper explores the associations between attitudes towards respite care, characteristics of the care giving situation, and the need and use of respite care. Method: The survey, administered to a sample of 273 informal caregivers, addressed caregiver, care recipient, and care giving situation characteristics, as well as the familiarity and use of respite care services. It also included a sub-set of 12 statements eliciting attitudes towards respite care from an earlier study [Van Exel NJA, De Graaf G, Brouwer WBF. Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology. Health Policy 2007;83(2/3):332-42]. Associations between variables were measured using univariate statistics and multinomial logistic regression. Results: We found three caregiver attitudes, distributed fairly equally in the sample, that are apparently associated with caregiver educational level, employment status, health and happiness, as well as care recipient gender, duration and intensity of care giving, relationship, co-residence, need for surveillance, and subjective burden and process utility of care giving. However, the relation between attitude and familiarity with and use of respite care services is ambiguous. Conclusions: Although further exploration is needed of the mix of Q-methodology and survey analysis, the overall results indicate that a considerable portion of the caregiver population needs but does not readily ask for support or respite care. This finding has important policy implications in the context of an ageing population. </description>
    </item> <item>
      <title>Unrelated medical costs in life-years gained: Should they be included in economic evaluations of healthcare interventions? (Article)</title>
      <link>http://repub.eur.nl/res/pub/14817/</link>
      <pubDate>2008-09-23T00:00:00Z</pubDate>
      <description>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.</description>
    </item> <item>
      <title>Needs of persons with severe intellectual disabilities: A Q-methodological study of clients with severe behavioural disorders and severe intellectual disabilities (Article)</title>
      <link>http://repub.eur.nl/res/pub/30283/</link>
      <pubDate>2008-09-01T00:00:00Z</pubDate>
      <description>Background: A demand-oriented approach is becoming increasingly important in care provision. The purpose of this study was to identify the primary needs of clients with Severe Behavioural Disorders and Severe Intellectual Disabilities. Materials and Methods: We used the theory of Social Production Function and Maslow's hierarchy of needs to operationalize different types of needs of clients with Severe Behavioural Disorders and Severe Intellectual Disabilities. A Q-methodological study enabled us to distinguish the needs of 23 clients. Results: Two needs prioritizations were found. Physical well-being ultimately weighs most heavily for all clients, but in one of the two groups affection and behavioural confirmation (i.e. social needs) were also found to be important. There were no significant differences in needs between clients whose main behavioural difficulty was aggression and clients whose main behavioural difficulty was self-harm. Conclusions: A demand-oriented policy for clients with Severe Behavioural Disorders and Severe Intellectual Disabilities should be targeted at groups with different needs prioritizations, rather than groups with different behavioural problems. That does not mean that the same needs of different clients can be met in exactly the same way. It takes creativity and a person-centred approach to find ways to enable clients to realize their social and physical needs. </description>
    </item> <item>
      <title>An overview of methods and applications to value informal care in economic evaluations of healthcare (Article)</title>
      <link>http://repub.eur.nl/res/pub/12056/</link>
      <pubDate>2008-04-01T00:00:00Z</pubDate>
      <description>This paper compares several applied valuation methods for including informal care in economic evaluations of healthcare programmes: the proxy good method; the opportunity cost method; the contingent valuation method (CVM); conjoint
measurement (CM); and valuation of health effects in terms of health-related quality of life (HR-QOL) and well-being. The comparison focuses on three questions: what outcome measures are available for including informal care in
economic evaluations of healthcare programmes; whether these measures are compatible with the common types of economic evaluation; and, when applying these measures, whether all relevant aspects of informal care are incorporated.
All types of economic evaluation can incorporate a monetary value of informal care (using the opportunity cost method, the proxy good method, CVM and CM) on the cost side of an analysis, but only when the relevant aspects of time costs
have been valued. On the effect side of a cost-effectiveness or cost-utility analysis, the health effects (for the patient and/or caregiver) measured in natural units or QALYs can be combined with cost estimates based on the opportunity cost
method or the proxy good method. One should be careful when incorporating CVM and CM in cost-minimization, cost-effectiveness and cost-utility analyses, as the health effects of patients receiving informal care and the carers themselves
may also have been valued separately. One should determine whether the caregiver valuation exercise allows combination with other valuation techniques. In cost-benefit analyses, CVM and CM appear to be the best tools for the valuation of informal care. When researchers decide to use the well-being method, we recommend applying it in a cost-benefit analysis framework. This method values overall QOL (happiness); hence it is broader than just HR-QOL, which complicates inclusion in traditional health economic evaluations that  normally define outcomes more narrowly. Using broader, non-monetary valuation techniques, such as the CarerQol instrument, requires a broader evaluation framework
than cost-effectiveness/cost-utility analysis, such as cost-consequence or multicriteria analysis.</description>
    </item> <item>
      <title>Q-methodology to identify young adult renal transplant recipients at risk for nonadherence (Article)</title>
      <link>http://repub.eur.nl/res/pub/29056/</link>
      <pubDate>2008-03-01T00:00:00Z</pubDate>
      <description>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. </description>
    </item> <item>
      <title>Welfarism vs. extra-welfarism (Article)</title>
      <link>http://repub.eur.nl/res/pub/29445/</link>
      <pubDate>2008-03-01T00:00:00Z</pubDate>
      <description>'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. </description>
    </item> <item>
      <title>Building quality report cards for geriatric care in The Netherlands: using concept mapping to identify the appropriate "building blocks" from the consumer's perspective (Article)</title>
      <link>http://repub.eur.nl/res/pub/23982/</link>
      <pubDate>2008-02-01T00:00:00Z</pubDate>
      <description>Abstract
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.</description>
    </item> <item>
      <title>The New Myth: The Social Value of the QALY (Article)</title>
      <link>http://repub.eur.nl/res/pub/23549/</link>
      <pubDate>2008-01-01T00:00:00Z</pubDate>
      <description></description>
    </item> <item>
      <title>Costs of stroke and stroke services: Determinants of patient costs and a comparison of costs of regular care and care organised in stroke services (Article)</title>
      <link>http://repub.eur.nl/res/pub/10142/</link>
      <pubDate>2003-01-01T00:00:00Z</pubDate>
      <description>BACKGROUND: Stroke is a major cause of death and long-term disability in
      Western societies and constitutes a major claim on health care budgets.
      Organising stroke care in a stroke service has recently been demonstrated
      to result in better health effects for patients. This paper discusses
      patient costs after stroke and compares costs between regular and stroke
      service care. METHODS: Costs were calculated within the framework of the
      evaluation of three experiments with stroke services in the Netherlands.
      Cost calculations are base on medical consumption data and actual costs.
      RESULTS: 598 patients were consecutively admitted to hospital after
      stroke. The average total costs of care per patient for the 6 month
      follow-up are estimated at 16,000. Costs are dominated by institutional
      and accommodation costs. Patients who die after stroke incur less costs.
      For patients that survive the acute phase, the most important determinants
      of costs are disability status and having a partner - as they influence
      patients' stroke careers. These determinants also interact. The most
      efficient stroke service experiment was most successful in co-ordinating
      patient flow from hospital to (nursing) home, through capacity planning
      and efficient discharge procedures. In this region the costs of stroke
      service care are the same as for regular stroke care. The other
      experiments suffered from waiting lists for nursing homes and home care,
      leading to "blocked beds" in hospitals and nursing homes and higher costs
      of care. Costs of co-ordination are estimated at about 3% of total costs
      of care. CONCLUSION: This paper demonstrates that by organising care for
      stroke patients in a stroke service, better health effects can be achieved
      with the same budget. In addition, it provides insight in need,
      predisposing and enabling factors that determine costs of care after
      stroke.</description>
    </item> <item>
      <title>Een situatieschets van mantelzorgers bereikt via leden van de vereniging van budgethouders Per Saldo (Research Paper)</title>
      <link>http://repub.eur.nl/res/pub/1341/</link>
      <pubDate>2003-01-01T00:00:00Z</pubDate>
      <description>Een persoonsgebonden budget (PgB) is een som geld waarmee mensen die hulp en begeleiding nodig hebben als gevolg van een aandoening, deze zorg naar eigen inzicht kunnen inkopen. Het PgB wordt  gezien als een belangrijk instrument om verder vorm te geven aan vraagsturing in de Nederlandse gezondheidszorg. Momenteel hebben ruim 35.000 mensen een PgB.
Over mensen met een PgB, budgethouders, en hun mantelzorgers is tot op heden echter weinig bekend. Daarom heeft de Erasmus Universiteit Rotterdam, in samenwerking met het Rijksinstituut voor Volksgezondheid en Milieu en de vereniging van budgethouders Per Saldo, een onderzoek onder budgethouders en hun mantelzorgers uitgevoerd. Dit is het eerste onderzoek in Nederland van deze omvang onder budgethouders, hun primaire mantelzorger en het gebruik van het PgB in verschillende zorgsituaties. In totaal werkten 609 budgethouders en 522 mantelzorgers verspreid over het hele land mee aan dit onderzoek, dat werd uitgevoerd tussen december 2001 en februari 2002.
Twee op de drie budgethouders geeft aan dat ze al voor de aanvraag van het PgB wisten op welke manier ze hulp zouden inschakelen. De belangrijkste reden om een PgB aan te vragen was dan ook de wens om de benodigde zorg naar eigen inzicht in te richten (58%). Budgethouders zijn gemiddeld voor 56,5 uur per maand geïndiceerd en ontvangen een bedrag van 1308 Euro per maand. Naast het inhuren van freelancers, iemand van de reguliere of commerciële thuiszorg, gebruiken veel budgethouders een deel van het PgB om hun mantelzorger te vergoeden voor (een deel van) de zorgtaken die hij of zij verricht en voor eventuele reiskosten.</description>
    </item> <item>
      <title>Mantelzorg in Nederland (Research Paper)</title>
      <link>http://repub.eur.nl/res/pub/1340/</link>
      <pubDate>2002-01-01T00:00:00Z</pubDate>
      <description>Mantelzorg is een belangrijke vorm van zorg. Nederland telt circa 1,5 miljoen mantelzorgers. De Erasmus Universiteit heeft samen met het Rijksinstituut voor Volksgezondheid en Milieu en de Steunpunten Mantelzorg een onderzoek naar mantelzorg uitgevoerd. In totaal werkten 950 mantelzorgers en 552 zorgvragers mee aan dit onderzoek.
Een mantelzorger is vaak een gehuwde vrouw, en zorgt meestal thuis voor een familielid. Een aanzienlijk deel heeft thuiswonende kinderen. De meeste mantelzorgers zijn gepensioneerd of huisvrouw/-man. De zorgvragers zijn meestal ouder dan 60 jaar en gehuwd, één op de vijf is weduwe of weduwnaar. Ongeveer de helft van de zorgvragers is met pensioen, één op de vier is arbeidsongeschikt. Zorgvragers zijn als gevolg van hun gebrekkige gezondheid beperkt in hun activiteit en hebben dus ondersteuning nodig. Hiervoor zijn ze afhankelijk van mantelzorgers, thuiszorg en particuliere hulp. Ruim één op de drie zorgvragers is volledig afhankelijk van mantelzorg, en ongeveer één op de vijf zelfs van één enkele mantelzorger. Ongeveer de helft van de zorgvragers heeft thuiszorg. Daarnaast heeft één op de vijf zorgvragers een particuliere hulp, voor gemiddeld acht uur per week.
Voor veel mantelzorgers legt de zorgtaak beslag op een belangrijk deel van hun leven. Ze besteden er gemiddeld zeven uur per dag aan, en vaak zeven dagen per week. De belangrijkste zorgtaak is ondersteuning bij huishoudelijke activiteiten, zoals boodschappen doen, het klaarmaken van eten en drinken, schoonmaken van het huis, en de was. Daarnaast zijn sociale ondersteuning (zoals praten en troosten) en hulp bij contacten met de gezondheidszorg, (zoals bezoek aan arts of ziekenhuis), belangrijk. Eén op de vier mantelzorgers combineert de zorgtaak met betaald werk. Ongeveer 15% van de mantelzorgers is geheel of gedeeltelijk gestopt met werken om zorg te kunnen (blijven) geven.
Voor veel mantelzorgers is de zorg een grote belasting. Maar liefst twee op de vijf mantelzorgers geeft aan dat de zorg (veel te) zwaar is. Volgens een objectieve maatstaf is twee op de drie mantelzorgers zelfs aanzienlijk belast. Maar verlenen van zorg geeft veel mantelzorgers ook voldoening. De helft van de mantelzorgers geeft aan de zorgtaak liever niet aan iemand anders over te willen dragen. Mantelzorgers en zorgvragers geven hun zorgsituatie gemiddeld een cijfer 6.2, oftewel, net voldoende.
De mantelzorgers die aan dit onderzoek hebben meegewerkt hebben over het algemeen een goede gezondheid, zijn tevreden over hun inkomen, en voelen zich tamelijk gelukkig. Er bestaan echter grote verschillen tussen mantelzorgers. Zo kan men stellen: veel mantelzorgers hebben weinig problemen met hun mantelzorgtaak, maar een kleine groep heeft grote problemen.</description>
    </item> <item>
      <title>Informal care in the Netherlands. A situational sketch of informal caregivers reached via Informal Care Centres (Research Paper)</title>
      <link>http://repub.eur.nl/res/pub/1342/</link>
      <pubDate>2002-01-01T00:00:00Z</pubDate>
      <description>Informal care is a very important form of care. There are approximately 1.5 
million informal caregivers in the Netherlands. Despite this large number, little is known about those providing this important service. To address this lack of knowledge, Erasmus University Rotterdam, in collaboration with the National Institute of Public Health and the Environment (RIVM) and the regional Informal Care Centres, carried out a study of informal care in the Netherlands.
This is the first study of any size in the Netherlands to survey both the providers and recipients of informal care. A total of 950 informal caregivers took part in the study, which was carried out between November 2001 and February 2002. This report presents some first results.</description>
    </item> <item>
      <title>Public transport strikes and traveller behaviour (Article)</title>
      <link>http://repub.eur.nl/res/pub/31842/</link>
      <pubDate>2001-11-22T00:00:00Z</pubDate>
      <description>In many countries strikes hit the public transport sector from time to time. Public transport strikes are important for transportation research because they can impact upon the perceived reliability of public transport services. Moreover, the traveller's most preferred alternative is removed from the choice set. The traveller is forced to make up his mind about his preferences; doing so may induce a shift from inert, habit-driven behaviour to rational behaviour. In this paper we review 13 studies of strikes in the public transport sector, discuss criteria that determine the kind and size of the effects of a public transport strike, and present the results of a survey carried out after a short, unannounced railway strike in the Netherlands. Our survey confirms the results of other studies. In the short-term mainly captive travellers are affected; these are mostly commuters without alternative modes of transport who are highly inflexible in their departure or arrival times. As a result, on average 10-20% of the trips are cancelled. Most travellers switch to the car (either as driver or passenger) and as a result road congestion increases. Longer-term effects include a decrease in market share for public transport, which various studies estimate to be between 0.3 and 2.5%. The effect of a strike on public transport rider-ship can be temporary or permanent, depending on the type of strike and the policy response to it. </description>
    </item>
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