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OBJECTIVES: The EPISODE study was commissioned by the Dutch Ministry of Health, Welfare and Sports to inform a reimbursement decision on seizure dogs. The randomized trial found that seizure dogs reduce seizure frequency and improve health-related quality of life of persons with severe refractory epilepsy (PSREs). This paper examines the cost-effectiveness of adding seizure dogs to usual care for PSREs in the Netherlands. METHODS: A microsimulation model was developed, informed by generalized linear mixed models using patient level trial data from the EPISODE study. The model adopted a 10-year time horizon and took a societal perspective. Seizure frequency was predicted as a function of time with the seizure dog. Patient utilities, caregiver utilities and costs were predicted as a function of seizure frequency and time with the seizure dog. RESULTS: Quality-adjusted life years (QALYs) of PSREs with a seizure dog and usual care alone were estimated at 6.28 and 5.65 respectively (Δ 0.63). For caregivers, estimated QALYs were 6.94 and 6.52, respectively (Δ 0.42). Total costs were respectively 228,691 and 226,261 (Δ 2,430). Intervention costs were largely offset by savings in informal care and healthcare. The incremental cost-effectiveness ratio (ICER) was 2,314/QALY. Probabilistic sensitivity analysis indicated a 91% probability of seizure dogs being cost-effective at the 50,000/QALY threshold. The ICER fell well below this threshold in scenario analyses. CONCLUSIONS: Seizure dogs are likely to be a cost-effective addition to usual care for PSREs in the Netherlands.
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BACKGROUND: Informal care features high on the policy agenda of many countries to deal with workforce shortages. As a consequence, care provision increasingly takes place in the care triad of care recipients, informal caregivers and care professionals. How collaboration between care partners takes shape depends on how the different partners perceive this collaboration. This paper aims to investigate the relative importance of the different aspects of collaboration from the perspectives of care recipients, informal caregivers and care professionals in the context of the care for older persons in The Netherlands. METHODS: Using Q-methodology, 32 participants ranked 28 statements that reflect different aspects of collaboration in the care triad and explained their ranking during a follow-up interview. Participants comprised 9 older persons, 10 informal caregivers and 13 care professionals. Data were analysed using by-person factor analysis to identify common patterns in the rankings of the statements. Emerging patterns were interpreted and described as views on collaboration using aggregated rankings and qualitative data from the interviews. RESULTS: Five distinct views on collaboration were found: (1) Emphasizing warm collaboration, (2) trusting care professional's expertise, (3) open and compassionate care professionals, (4) responsive decision-making by autonomous care professionals and (5) prioritizing care recipient's and informal caregiver's interests. Care recipients and/or informal caregivers were associated with views 1, 3 and, 5, whereas care professionals were associated with all five views. CONCLUSIONS: Our study highlights the importance of recognizing the potential diversity of views between and within different partner groups in care triads. Governmental and organizational policy makers, as well as healthcare professionals who aim to increase or support the involvement of informal caregivers, should take this heterogeneity into consideration. PATIENT OR PUBLIC CONTRIBUTION: An advisory board of older persons (care recipients and informal caregivers) was involved in the recruitment of the participants, the formulation of the statements and the reflection on the findings of the study and potential implications.
Subject(s)
Caregivers , Cooperative Behavior , Humans , Caregivers/psychology , Aged , Male , Female , Netherlands , Middle Aged , Aged, 80 and over , Health Personnel/psychology , Interviews as Topic , Qualitative Research , Professional-Patient RelationsABSTRACT
OBJECTIVES: Economic evaluations of interventions in health and social care require outcome measures that capture their full benefits, including those beyond health. This study aimed to assess construct validity, test-retest reliability, and responsiveness of the newly developed 10-item Well-being instrument (WiX). METHODS: Data were gathered via an online survey in a representative sample of the adult general population in The Netherlands (N = 1045). Construct validity was assessed by inspecting convergent, structural, and discriminant validity, following the COnsensus-based Standards for the selection of health status Measurement INstruments methodology. Regression analyses of the WiX and its items on other validated measures of well-being were performed to assess the convergent validity of the instrument and the relevance of its items. Dimensionality of the WiX was assessed using exploratory factor analysis. To assess discriminant validity, several hypotheses in terms of well-being differences were assessed. Finally, a second survey was sent out 2 weeks after the initial survey (n = 563; 53.9% response rate) to assess the test-retest reliability and responsiveness of the WiX. RESULTS: The WiX showed to be correlated with alternative well-being measures as expected and able to sufficiently differentiate between relevant subgroups in the population. Moreover, the dimensionality analysis indicated that the WiX captures a broad array of elements relevant to well-being, including physical and mental health. The test-retest reliability was good, with an intraclass correlation coefficient of 0.82. CONCLUSIONS: The results regarding the WiX are favorable and indicate that this new instrument may be a promising alternative for existing measures of well-being for evaluating interventions in health and social care.
Subject(s)
Psychometrics , Humans , Reproducibility of Results , Female , Male , Middle Aged , Adult , Netherlands , Surveys and Questionnaires , Health Status , Quality of Life , Aged , Young Adult , Cost-Benefit Analysis , Adolescent , Mental Health , Factor Analysis, StatisticalABSTRACT
BACKGROUND AND OBJECTIVES: The aim of this study was to evaluate whether people living with severe medically refractory epilepsy (PSRE) benefit from a seizure dog. METHODS: An individual-level stepped-wedge randomized controlled trial was conducted. The study was conducted in the Netherlands among adults with daily to weekly seizures. All participants were included simultaneously (on June 1, 2019) while receiving usual care. Then, during the 36-month follow-up, they received a seizure dog in a randomized sequence. Participants kept a seizure diary and completed 3-monthly surveys. Seizure frequency was the primary outcome. Secondary outcomes included seizure-free days, seizure severity, health-related quality of life (HRQoL), and well-being. Data were analyzed using generalized linear mixed modeling (GLMM). The models assumed a delayed intervention effect, starting when the seizure dog reached an advanced stage of training. Effects were calculated as changes per 28-day period with the intervention. RESULTS: Data were collected from 25 participants, of whom 20 crossed over to the intervention condition. The median follow-up was 19 months with usual care and 12 months with the intervention. On average, participants experienced 115 (SD 164) seizures per 28-day period in the usual care condition and 73 (SD 131) seizures in the intervention condition. Seven participants achieved a reduction of 50% or more at the end of follow-up. GLMM indicated a 3.1% decrease in seizure frequency for each consecutive 28-day period with the intervention (0.969, 95% CI 0.960-0.977). Furthermore, an increase in the number of seizure-free days was observed (1.012, 95% CI 1.009, 1.015), but no effect on seizure severity measured with the NHS3. Generic HRQoL scores improved, as reflected in the decrease in EQ-5D-5L utility decrement (0.975, 95% CI 0.954-0.997). Smaller improvements were observed on overall self-rated HRQoL, epilepsy-specific HRQoL, and well-being, measured with the EQ VAS, QOLIE-31-P, and ICECAP-A, respectively. DISCUSSION: Seizure dogs reduce seizure frequency, increase the number of seizure-free days, and improve the quality of life of PSRE. The magnitude of the effect on generic HRQoL indicates that seizure dogs benefit PSRE beyond the impact on seizure frequency alone. Early discontinuation of seizure dog partnerships suggests that this intervention is not suitable for all PSRE and requires further study. TRIAL REGISTRATION INFORMATION: This study was registered in the Dutch Trial Register (NL6682) on November 28, 2017. Participants were enrolled on June 1, 2019. CLASSIFICATION OF EVIDENCE: This study provides Class III evidence that seizure dogs are associated with a decrease in seizure frequency in adult patients with medically refractory epilepsy.
Subject(s)
Drug Resistant Epilepsy , Epilepsy , Adult , Dogs , Humans , Animals , Quality of Life , Seizures , Surveys and QuestionnairesABSTRACT
An important issue in economic evaluations is determining whether all relevant impacts are considered, given the perspective chosen for the analysis. Acknowledging that patients are not isolated individuals has important implications in this context. Increasingly, the term "spillovers" is used to label consequences of health interventions on others. However, a clear definition of spillovers is lacking, and as a result, the scope of the concept remains unclear. In this study, we aim to clarify the concept of spillovers by proposing a definition applicable in health economic evaluations. To illustrate the implications of this definition, we highlight the diversity of potential spillovers through an expanded impact inventory and conduct a mapping review that outlines the evidence base for the different types of spillovers. In the context of economic evaluations of health interventions, we define spillovers as all impacts from an intervention on all parties or entities other than the users of the intervention under evaluation. This definition encompasses a broader range of potential costs and effects, beyond informal caregivers and family members. The expanded impact inventory enables a systematic approach to identifying broader impacts of health interventions. The mapping review shows that the relevance of different types of spillovers is context-specific. Some spillovers are regularly included in economic evaluations, although not always recognised as such, while others are not. A consistent use of the term "spillovers", improved measurement of these costs and effects, and increased transparency in reporting them are still necessary. To that end, we propose a research agenda.
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Based on theoretical notions, there is consensus that alternative payment models to the common fee-for-service model have the potential to improve healthcare quality through increased collaboration and reduced under- and overuse. This is particularly relevant for maternity care in the Netherlands because perinatal mortality rates are relatively high in comparison to other Western countries. Therefore, an experiment with bundled payments for maternity care was initiated in 2017. However, the uptake of this alternative payment model remains low, as also seen in other countries, and fee-for-service models prevail. A deeper understanding of stakeholders' perspectives on payment reform in maternity care is necessary to inform policy makers about the obstacles to implementing alternative payment models and potential ways forward. We conducted a Q-methodology study to explore perspectives of stakeholders (postpartum care managers, midwives, gynecologists, managers, health insurers) in maternity care in the Netherlands on payment reform. Participants were asked to rank a set of statements relevant to payment reform in maternity care and explain their ranking during an interview. Factor analysis was used to identify patterns in the rankings of statements. We identified three distinct perspectives on payment reform in maternity care. One general perspective, broadly supported within the sector, focusing mainly on outcomes, and two complementary perspectives, one focusing more on equality and one focusing more on collaboration. This study shows there is consensus among stakeholders in maternity care in the Netherlands that payment reform is required. However, stakeholders have different views on the purpose and desired design of the payment reform and set different conditions. Working towards payment reform in co-creation with all involved parties may improve the general attitude towards payment reform, may enhance the level of trust among stakeholders, and may contribute to a higher uptake in practice.
Subject(s)
Maternal Health Services , Midwifery , Obstetrics , Humans , Female , Pregnancy , Netherlands , Fee-for-Service PlansABSTRACT
Efficiently allocating scarce healthcare resources requires nuanced understanding of individual and collective interests as well as relative concerns, which may overlap or conflict. This paper is the first to empirically investigate whether and to what extent self-interest (SI), positional concerns (PC) and distributional considerations (DC) simultaneously explain individual decision making related to access to healthcare services. Our investigation is based on a stated choice experiment conducted in two countries with different healthcare systems, the United States (US) and the United Kingdom (UK). The choice experiment is on allocation of medical treatment waiting times for a hypothetical disease. We carry out the investigation under two different perspectives: (i) in a socially inclusive personal perspective decision makers were asked to choose between waiting time distributions for themselves and (ii) in a social perspective decision makers were asked to make similar choices for a close relative or friend of opposite gender. The results obtained by estimating a variety of advanced choice models indicate that DC, SI and PC, in this order of importance, are significant drivers of choice behaviour in our empirical context. These findings are consistent regardless of the choice perspective and the country where decision makers live. Comparing the results from different choice perspectives, we find that US respondents who chose for their close relative or friend attach significantly larger weight to their close relative's or friend's waiting times as well as to the overall distribution of waiting times than US respondents who chose for themselves. Looking at differences between countries, our results show that UK respondents who made choices for themselves placed significantly larger weight on SI and DC than US respondents, while US respondents, in turn, displayed relatively stronger but not significantly different positional concerns than UK respondents. In addition, we observe that UK respondents who chose for their close relative or friend put a larger weight on DC than their US counterparts. We conclude that the methodological (data collection and analysis) approach allows for disentangling the relative importance of the three motivations and discusses the potential implications of these findings for healthcare decision making.
Subject(s)
Delivery of Health Care , Humans , United Kingdom , Data CollectionABSTRACT
Participatory value evaluation (PVE) has recently been introduced in the field of health as a new method to elicit stated preferences for public policies. PVE is a method in which respondents in a choice experiment are presented with various policy options and their attributes, and are asked to compose their portfolio of preference given a public-resource constraint. This paper aims to illustrate PVE's potential for informing healthcare decision making and to position it relative to established preference-elicitation methods. We first describe PVE and its theoretical background. Next, by means of a narrative review of the eight existing PVE applications within and outside the health domain, we illustrate the different implementations of the main features of the method. We then compare PVE to several established preference-elicitation methods in terms of the structure and nature of the choice tasks presented to respondents. The portfolio-based choice task in a PVE requires respondents to consider a set of policy alternatives in relation to each other and to make trade-offs subject to one or more constraints, which more closely resembles decision making by policymakers. When using a flexible budget constraint, respondents can trade-off their private income with public expenditures. Relative to other methods, a PVE may be cognitively more demanding and is less efficient; however, it seems a promising complementary method for the preference-based assessment of health policies. Further research into the feasibility and validity of the method is required before researchers and policymakers can fully appreciate the advantages and disadvantages of the PVE as a preference-elicitation method.
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Delivery of Health Care , Health Facilities , Humans , Health Policy , Decision Making , Patient Preference , Choice BehaviorABSTRACT
AIM: This paper investigates the prevalence and determinants of three main states of people's willingness to be vaccinated (WTBV) against COVID-19 - willing, unwilling and hesitant - and the occurrence and predictors of shifts between these states over time. Understanding the dynamics of vaccine intentions is crucial for developing targeted campaigns to increase uptake and emergency response preparedness. STUDY DESIGN: A panel survey consisting of 9 quarterly waves of data collected between April 2020 and January 2022. Baseline data included 24 952 adults from Germany, UK, Denmark, the Netherlands, France, Portugal, and Italy recruited from online panels to construct census-matched nationally representative samples. METHODS AND MEASURES: Self-reported COVID-19 vaccine intention was the main outcome. Multinomial logit random effects models were used to analyze the relationships of interest. All results reported as relative risk ratios (RRR). RESULTS: Hesitancy to get vaccinated was the most unstable vaccine intention, with on average 42% of ever hesitant respondents remaining in this state through future waves, followed by the 'unwilling' (53%) and 'willing (82%). Following COVID-19 news, trust in information from the government, GPs and the WHO, risk preferences, risk perceptions, and confidence in vaccines (or lack thereof) predicted vaccination intention reversals. Risk preferences acted both as an impediment and as a facilitator for the vaccine uptake depending on the initial vaccine intention. CONCLUSIONS AND RELEVANCE: This study revealed the dynamic nature of COVID-19 vaccine intentions and its predictors in 7 European countries. The findings provide insights to policymakers for designing more effective communication strategies, particularly targeted at hesitant and unwilling to vaccinate population groups, to increase vaccine uptake for future public health emergencies.
Subject(s)
COVID-19 , Adult , Humans , COVID-19/prevention & control , COVID-19 Vaccines , Vaccination Hesitancy , Europe/epidemiology , France , Intention , VaccinationABSTRACT
The COVID-19 pandemic considerably impacted the lives of European citizens. This study aims to provide a nuanced picture of well-being patterns during the pandemic across Europe with a special focus on relevant socio-economic sub-groups. This observational study uses data from a repeated, cross-sectional, representative population survey with nine waves of data from seven European countries from April 2020 to January 2022. The analysis sample contains a total of 25,062 individuals providing 64,303 observations. Well-being is measured using the ICECAP-A, a multi-dimensional instrument for approximating capability well-being. Average levels of ICECAP-A index values and sub-dimension scores were calculated across waves, countries, and relevant sub-groups. In a fixed effects regression framework, associations of capability well-being with COVID-19 incidence, mortality, and the stringency of the imposed lockdown measures were estimated. Denmark, the Netherlands, and France experienced a U-shaped pattern in well-being (lowest point in winter 2020/21), while well-being in the UK, Germany, Portugal, and Italy followed an M-shape, with increases after April 2020, a drop in winter 2020, a recovery in the summer of 2021, and a decline in winter 2021. However, observed average well-being reductions were generally small. The largest declines were found in the well-being dimensions attachment and enjoyment and among individuals with a younger age, a financially unstable situation, and lower health. COVID-19 mortality was consistently negatively associated with capability well-being and its sub-dimensions, while stringency and incidence rate were generally not significantly associated with well-being. Further investigation is needed to understand underlying mechanisms of presented patterns.
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Experiencing deteriorating health has implications for your quality of life. The theory of adaptation suggests that with time spend living in a health state individuals can adapt, resulting in observed quality of life levels to revert or stagnate despite persistently decreased health. Adaptation has implications for the use of subjective quality of life indicators when quantifying the impact of health changes or the benefits from new medical technologies. As both the impact from ill health and the benefit from new interventions might be disease- or subgroup-specific adaptation further raises ethical concerns but empirical evidence on its existence, magnitude, and heterogeneity remains inconclusive. This paper uses a general population sample of 9,543 individuals that participate in the UK Understanding Society survey and experience the onset of a long-standing illness or disability to provide evidence on these questions. Using ordered-response fixed effects models we explore longitudinal changes in self-assessed health and life satisfaction around the onset of disability. Our results indicate that disability onset is associated with large decreases in subjective health and well-being. Over time this initial decrease in subjective quality of life indicators attenuates, especially in life satisfaction and to a lesser extent for self-assessed health. While the relative difference in adaptation across these two measures remains persistent, we find that across demographic and severity groups the initial impact of disability onset and adaptation differs considerably in its magnitude. These results have important implications for studies aiming to quantify the impact of health conditions on quality of life outcomes, especially when using observational datasets.
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Disabled Persons , Quality of Life , Humans , Surveys and Questionnaires , Personal Satisfaction , United KingdomABSTRACT
BACKGROUND: Productivity costs can form a large and influential component of total costs in an economic evaluation taking a societal perspective. In calculating productivity costs, estimating productivity losses is a central element. Compensation mechanisms and multiplier effects may influence these losses but remain understudied. Compensation mechanisms could reduce productivity losses while multiplier effects may increase them. METHODS: Data on productivity losses were collected in 2015 using an online survey among a sample of persons aged 15-65 years in The Netherlands who worked at least 12 h per week and reported to have experienced absenteeism and/or presenteeism during the past 4 weeks. A total of 877 respondents completed the survey that contained questions on productivity losses, compensation mechanisms, and multiplier effects. RESULTS: We found that 45.5% of the respondents reported absenteeism (average 6.5 days) during the past 4 weeks, losing on average 48.7 working hours, while presenteeism was experienced by 75.9% of respondents, with an average loss of 10.7 working hours. Compensation mechanisms were reported by 76.9% of respondents, compensating almost 80% of their lost production, while multiplier effects were reported by 23.6% of respondents, reducing the productivity of 4.2 colleagues by 27.8% on average, implying a multiplier of 2.1 in that subgroup. CONCLUSIONS: This study highlights that compensation mechanisms and multiplier effects are common and may substantially affect production losses. Investigating these mechanisms and effects further, as well as their interactions, remains important. Translating these findings into productivity cost calculations in economic evaluations is not straightforward and requires attention, especially since compensation mechanisms may not be costless and, for multiplier effects, the value of hours of colleagues may not be similar to that of the person experiencing health problems.
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Absenteeism , Presenteeism , Humans , Efficiency , Surveys and Questionnaires , NetherlandsABSTRACT
PURPOSE: To investigate health-related quality of life (HRQoL) over the course of the COVID-19 pandemic in seven European countries and its association with selected sociodemographic as well as COVID-19-related variables. METHODS: We used longitudinal data from nine quarterly waves collected between April 2020 and January 2022 (sample size per wave ranging from N = 7025 to 7300) of the European COvid Survey (ECOS), a representative survey of adults in Germany, United Kingdom, Denmark, Netherlands, France, Portugal and Italy. HRQoL was measured using the EQ-5D-5L. The association of self-reported COVID-19 infection, perceived health risk from COVID-19, selected sociodemographic variables and the COVID-19 stringency index with HRQoL was analyzed by logistic and linear fixed effects regressions. RESULTS: On average across all nine waves, the proportion of respondents reporting any problems in at least one of the EQ-5D dimensions ranged between 63.8% (Netherlands) and 71.0% (Denmark). Anxiety/depression was the most frequently affected EQ-5D dimension in four countries (Portugal: 52.0%; United Kingdom: 50.2%; Italy: 49.2%; France: 49.0%), whereas pain/discomfort ranked first in three countries (Denmark: 58.3%; Germany: 55.8%; Netherlands: 49.0%). On average across all nine waves, the EQ-VAS score ranged from 70.1 in the United Kingdom to 78.4 in Portugal. Moreover, the EQ-5D-5L index ranged from .82 in Denmark to .94 in France. The occurrence of COVID-19 infection, changes in the perceived risk to one's own health from COVID-19, the occurrence of income difficulties and an increase in the COVID-19 stringency index were associated with increased likelihood of problems in EQ-5D dimensions, reduced EQ-VAS score and reduced EQ-5D-5L index. CONCLUSIONS: Across seven European countries, we found large proportions of respondents reporting problems in HRQoL dimensions throughout the pandemic, especially for anxiety/depression. Various sociodemographic and COVID-19-related variables were associated with HRQoL in longitudinal analysis.
Subject(s)
COVID-19 , Quality of Life , Adult , Humans , Quality of Life/psychology , Pandemics , Health Status , COVID-19/epidemiology , Surveys and QuestionnairesABSTRACT
Policy makers need to make decisions regarding the allocation of scarce healthcare resources. We study preferences for investment in additional healthcare capacity and allocation between two regions, focusing on reducing waiting time for elective surgery for a physical health problem. We elicit preferences from a societal and an individual perspective, with unequal initial waiting times between the two regions. In an online survey, 1039 respondents were randomly assigned to one of three versions of the experiment: (1) a social planner perspective, placing respondents in the role of a policy maker; (2) an individual perspective where the respondent's own region was better off regarding initial waiting times; (3) an individual perspective where the individual's own region was worse off regarding initial waiting times. Respondents were asked to rank the status quo and five scenarios where the investment in additional capacity led to different distributions of shorter waiting times between regions. For all allocations we presented both the reduction in waiting time and the resulting final waiting time for both regions. We find that in version 1 of the experiment, preferences were in line with inequality aversion and Rawlsian preferences regarding final waiting time. In version 3, similar preferences were found, although here they also align with individualistic preferences. In version 2, preferences were more heterogeneous, with both individualistic and egalitarian preferences present. Concluding, individualistic and egalitarian preferences mostly concerned final waiting time. We therefore recommend policy makers to focus on the effect on final waiting time instead of the reduction of waiting time.
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Capacity Building , Health Care Rationing , Humans , Health ResourcesABSTRACT
Recently, due to the corona virus outbreak, pandemics and their effects have been at the forefront of the research agenda. However, estimates of the perceived value of early warning systems (EWSs) for identifying, containing, and mitigating outbreaks remain scarce. This paper aims to show how potential health gains due to an international EWS might be valued. This paper reports on a study into willingness to pay (WTP) in six European countries for health gains due to an EWS. The context in which health is gained, those affected, and the reduction in risk of contracting the disease generated by the EWS are varied across seven scenarios. Using linear regression, we analyse this 'augmented' willingness to pay for a QALY (WTP-Q) for each of the scenarios, where 'augmented' refers to the possible inclusion of context specific elements of value, such as feelings of safety. An initial WTP-Q estimate for the basic scenario is 17,400. This can be interpreted as a threshold for investment per QALY into an EWS. Overall, WTP estimates move in the expected directions (e.g. higher risk reduction leads to higher WTP). However, changes in respondents' WTP for reductions in risk were not proportional to the magnitude of the change in risk reduction. This study provided estimates of the monetary value of health gains in the context of a pandemic under seven scenarios which differ in terms of outcome, risk reduction and those affected. It also highlights the importance of future research into optimal ways of eliciting thresholds for investments in public health interventions.
Subject(s)
Coronavirus Infections , Disease Outbreaks , Humans , Disease Outbreaks/prevention & control , Public Health , Emotions , Europe/epidemiology , Surveys and QuestionnairesABSTRACT
Background: A small group of people with epilepsy suffers from frequent seizures despite the available pharmacological and non-pharmacological interventions. The impact of epilepsy on these people extends beyond health-related quality of life (HRQoL), impacting a person's broader well-being and ability to participate in society. This study describes the burden of medically refractory epilepsy in people who suffer from daily to weekly seizures, in terms of HRQoL, well-being, and societal costs. Methods: Data from the EPISODE study on (cost-) effectiveness of seizure dogs for adults with severe medically refractory epilepsy were used, collected in 25 patients during the first 12 months before they were partnered with a certified seizure dog. Data comprised seizure diaries covering 365 days and five three-monthly surveys, including the EQ-5D-5L, QOLIE-31-P, and ICECAP-A to measure HRQoL and well-being. A societal perspective was applied to estimate costs using the iMCQ and iPCQ questionnaires about healthcare use, informal care, and productivity losses. Results: Daily seizure frequency and survey data were collected in 25 patients. A minimum of 114 observations was available for each instrument included in the survey. A total of 80% of participants experienced seizures on three or more days per week, with a median ranging from 1 to 17 seizures per seizure day. The mean EQ-5D-5L utility score was 0.682 (SD 0.235), which is considerably lower than the age-adjusted general population average. The mean QOLIE-31-P and ICECAP-A scores were 55.8 (SD 14.0) and 0.746 (SD 0.172), respectively. The average annual total cost amounted to 39,956 (range 3,804-132,64). Informal care accounted for the largest share of costs (50%); those who received informal care reported, on average, 26 h per week (SD 30). Conclusions: Severe medically refractory epilepsy is associated with a considerable burden of illness at the patient and societal level. People with this condition have significantly reduced HRQoL and well-being and are limited in their ability to work while having substantial medical costs and a strong dependency on informal care.
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BACKGROUND: The Netherlands hosts, as many other European countries, three population-based cancer screening programmes (CSPs). The overall uptake among these CSPs is high, but has decreased over recent years. Especially in highly urbanized regions the uptake rates tend to fall below the minimal effective rate of 70% set by the World Health Organization. Understanding the reasons underlying the decision of citizens to partake in a CPS are essential in order to optimize the current screening participation rates. The aim of this study was to explore the various perspectives concerning cancer screening among inhabitants of The Hague, a highly urbanized region of the Netherlands. METHODS: A Q-methodology study was conducted to provide insight in the prevailing perspectives on partaking in CSPs. All respondents were inhabitants of the city of The Hague, the Netherlands. In an online application they ranked a set of 31 statements, based on the current available literature and clustered by the Integrated Change model, into a 9-column forced ranking grid according to level of agreement, followed by a short survey. Respondents were asked to participate in a subsequent interview to explain their ranking. By-person factor analysis was used to identify distinct perspectives, which were interpreted using data from the rankings and interviews. RESULTS: Three distinct perspectives were identified: 1). "Positive about participation", 2). "Thoughtful about participation", and 3). "Fear drives participation". These perspectives provide insight into how potential respondents, living in an urbanized region in the Netherlands, decide upon partaking in CSPs. CONCLUSIONS: Since CSPs will only be effective when participation rates are sufficiently high, it is essential to have insight into the different perspectives among potential respondents concerning partaking in a CSP. This study adds new insights concerning these perspectives and suggests several ideas for future optimization of the CSPs.
Subject(s)
Early Detection of Cancer , Neoplasms , Humans , Mass Screening , Neoplasms/diagnosis , Neoplasms/prevention & control , Netherlands , Surveys and QuestionnairesABSTRACT
In the Netherlands, about one-third of the adult population provides unpaid care. Providing informal caregiving can be very straining in normal times, but the impact of a public health crisis on caregivers is largely unknown. This study focuses on the question of how caregiver burden changed following the COVID-19 pandemic, and what characteristics were related to these changes. We use self-reported data from a sample of 965 informal caregivers from the Netherlands 3 months into the pandemic to investigate how the objective burden (i.e. hours spent on caregiving) and the subjective burden had changed, and what their care-related quality of life (CarerQol) was. We found that on average the subjective burden had increased slightly (from 4.75 to 5.04 on a 0-10 scale). However, our analysis revealed that some caregivers were more affected than others. Most affected caregivers were women, and those with low income, better physical health, decreased psychological health, childcare responsibilities, longer duration of caregiving and those caring for someone with decreased physical and psychological health. On average, time spent on care remained the same (a median of 15 h per week), but certain groups of caregivers did experience a change, being those caring for people in an institution and for people with a better psychological health before the pandemic. Furthermore, caregivers experiencing changes in objective burden did not have the same characteristics as those experiencing changes in perceived burden and quality of life. This shows that the consequences of a public health crisis on caregivers cannot be captured by a focus on either objective or subjective burden measures or quality of life alone. Long-term care policies aiming to support caregivers to persevere during a future crisis should target caregivers at risk of increased subjective burden and a lower CarerQol, such as women, people with a low income and people with childcare responsibilities. Such policies should consider that reducing objective burden may not necessarily lead to a reduction in subjective burden for all caregivers.
Subject(s)
COVID-19 , Caregivers , Adult , Female , Humans , Male , Caregivers/psychology , Quality of Life , Pandemics , Netherlands/epidemiology , COVID-19/epidemiology , Patient Care , Self ReportABSTRACT
BACKGROUND: The first wave of the COVID-19 pandemic overwhelmed healthcare systems in many countries, and the rapid spread of the virus and the acute course of the disease resulted in a shortage of intensive care unit (ICU) beds. We studied preferences of the public in the Netherlands regarding the allocation of ICU beds during a health crisis. METHODS: We distributed a cross-sectional online survey at the end of March 2020 to a representative sample of the adult population in the Netherlands. We collected preferences regarding the allocation of ICU beds, both in terms of who should be involved in the decision-making and which rationing criteria should be considered. We conducted Probit regression analyses to investigate associations between these preferences and several characteristics and opinions of the respondents. RESULTS: A total of 1,019 respondents returned a completed survey. The majority favored having physicians (55%) and/or expert committees (51%) play a role in the allocation of ICU beds and approximately one-fifth did not favor any of the proposed decision-makers. Respondents preferred to assign higher priority to vulnerable patients and patients who have the best prospect of full recovery. They also preferred that personal characteristics, including age, play no role. CONCLUSION: "Our findings show that current guidelines for allocating ICU beds that include age as an independent criterion may not be consistent with societal preferences. Age may only play a role indirectly, in relation to the vulnerability of patients and their prospect of full recovery. Allocation of ICU beds during a health crisis requires a multivalue ethical framework."