Resources available to the health care sector are finite and typically insufficient to fulfil all the demands for health care in the population. Decisions must be made about which treatments to ...provide. Relatively little is known about the views of the general public regarding the principles that should guide such decisions.
We present the findings of a Q methodology study designed to elicit the shared views in the general public across ten countries regarding the appropriate principles for prioritising health care resources. In 2010, 294 respondents rank ordered a set of cards and the results of these were subject to by-person factor analysis to identify common patterns in sorting. Five distinct viewpoints were identified, (I) “Egalitarianism, entitlement and equality of access”; (II) “Severity and the magnitude of health gains”; (III) “Fair innings, young people and maximising health benefits”; (IV) “The intrinsic value of life and healthy living”; (V) “Quality of life is more important than simply staying alive”.
Given the plurality of views on the principles for health care priority setting, no single equity principle can be used to underpin health care priority setting. Hence, the process of decision making becomes more important, in which, arguably, these multiple perspectives in society should be somehow reflected.
•Little is known about views in society on principles to guide priority setting.•We used Q methodology with members of the public across ten countries.•We found five shared views on principles regarded appropriate for rationing.•No single equity principle can be used to underpin priority setting in health care.•This plurality of views in society should be reflected in priority setting processes.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
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 multi-criteria analysis.
In the evaluation of well‐being, it is not only important what people have in absolute terms, but also how this compares to reference points in relative terms. We explore the relevance of relative ...comparisons by testing the effect of people's self‐rated position on potential reference points for income and health on their subjective well‐being. We used Multiple Discrepancies Theory as a framework to identify seven potentially relevant reference points for income and health. A representative sample (N = 550) of the Netherlands assessed their income and health relative to these reference points. In addition, we elicited monthly household income, health status (EQ‐5D‐5L), and subjective well‐being (SWLS). In line with the literature, we found a negative convex relationship between subjective well‐being and age and a positive relationship with being employed, income, and health. For income, subjective well‐being was also associated with how current income compared to respondents' needs and progression over time, and for health especially with how current health compared to what they felt they deserved. Our findings suggest that income and health are important for subjective well‐being both in absolute and relative terms. We found negative effects on life satisfaction if some of the domain specific reference points were not met.
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Welfarism vs. extra-welfarism Brouwer, Werner B.F.; Culyer, Anthony J.; van Exel, N. Job A. ...
Journal of health economics,
03/2008, Volume:
27, Issue:
2
Journal Article
Peer reviewed
Open access
‘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.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
In the last 30 years, innovations in oral healthcare (OHC), such as advanced restorative techniques, shifts towards preventive and evidence-based care and changes in patients' expectations, have ...increased the complexity of clinical decision-making in OHC. Little is known about the perspectives of general dental practitioners (GDPs) on the value of providing preventive, patient-centred and evidence-based OHC. This study aimed to explore the range of perspectives present amongst GDPs on OHC.
Q-methodology was used to explore perspectives among 78 GDPs working in the Netherlands. Participants were asked to sort 50 statements representing three central domains in OHC: i.) restorative versus preventative OHC, ii.) disease-centred versus patient-centred OHC and iii.) expertise-based versus evidence-based OHC. Opinion statements about delivering OHC were formulated on the basis of published literature and input from OHC professionals. By-person factor analysis was used to reveal clusters of communality in statement rankings, which were interpreted and formed perspectives on OHC.
Four perspectives, explaining 47% of variance, on OHC were identified amongst GDPs: 'the patient-focused dentist who values prevention', 'the outcome-oriented dentist who values learning from colleagues', 'the team player with ultimate care responsibility' and 'the dentist who considers oral health the responsibility of the patient.'
Q-methodology can be effectively used to describe the different perspectives that GDPs have on the challenges of preventive, patient-centred and evidence-based OHC. GDPs should not be seen as a homogenous group; rather they have different views and approaches to the care they provide. This has implications for health systems; awareness of the heterogeneity of practitioners' perspectives can potentially be used to develop bespoke quality of care improvement strategies that constructively engage with each of these different groups.
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DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
▶ The caregiving effect is the welfare effect of providing informal care, i.e., the effect of the burden of caregiving. The family effect is a direct influence of the health of a patient on others’ ...well-being, i.e., the effects of caring about other people. ▶ TThe caregiving effect can be present only in caregivers while the family effect in the broader group of significant other, regardless of their caregiving status. However, both effects are usually disregarded in economic evaluations which treat patients as isolated individuals. ▶ 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.
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.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
Background
In this survey, we aimed to provide early insight into the impact of COVID‐19 on blood donors and their motivation to donate during the crisis.
Study design and methods
We asked ...representative samples in 7 European countries (Denmark, France, Germany, Italy, Portugal, the Netherlands and the UK) about their blood donation activity and motivation to donate using an online survey. We analysed donor turnout during the COVID‐19 period descriptively and using logistic regression.
Results
Of the 7122 people that responded to the survey, 1205 (16·9%) blood donors were identified, with 33·8% donating during the first 4–5 months of the COVID‐19 period. We observed that around half of donors donated less than normal. The vast majority of donors that did donate made a special effort to do so in response to COVID‐19. The majority of donors were also not aware of their blood being tested for COVID‐19 antibodies. Although the perceived risk of infection among all respondents whilst donating blood was relatively low, those who anticipated a high risk of infection were much less likely to donate (OR = 0·540; P‐value = 0·006). Furthermore, those that were adherent to COVID guidelines were also less likely to donate (OR = 0·583; P‐value = 0·000).
Discussion
We suggest that blood collection services consider specialist campaigns that focus on the altruistic motivation of donors during the crisis and that they continue to communicate the additional safety measures in place with the aim of reducing the fear of infection whilst donating blood.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Background
Active patient involvement in treatment decisions is seen as a feature of patient‐centred care that will ultimately lead to better healthcare services and patient outcomes. Although many ...factors have been identified that influence patient involvement in treatment decisions, little is known about the different views that patients have on which factors are most important.
Objective
This study explores the views of patients with a chronic condition on factors influencing their involvement in treatment decisions.
Design
Q‐methodology was used to study the views of patients. Respondents were asked to rank a set of 42 statements from the least important to the most important for active patient involvement in treatment decision‐making. The set of 42 statements was developed based on a literature search and a pilot in which two external researchers, 15 patients and four healthcare professionals participated. A total of 136 patients with one of three major chronic conditions were included: diabetes types 1 and 2, respiratory disease (i.e., chronic obstructive pulmonary disease and asthma) and cancer (i.e., breast cancer and prostate cancer). Data were collected in a face‐to‐face interview setting in the Netherlands.
Results
Four distinct views on the factors influencing active patient involvement were identified among patients with a chronic condition. (1) Enabled involvement: the extent to which patients are facilitated and empowered to participate will lead to patient involvement. (2) Relationship‐driven involvement: the relationship between patients and healthcare professionals drives patient involvement. (3) Disease impact‐driven involvement: the severity of disease drives patient involvement. (4) Cognition‐driven involvement: knowledge and information drive patient involvement.
Discussion and Conclusion
From the patients' perspective, this study shows that there is no one‐size‐fits‐all approach to involving patients more actively in their healthcare journey. Strategies aiming to enhance active patient involvement among patients with a chronic condition should consider this diversity in perspectives among these patients.
Patient Contribution
Patients are the respondents as this study researches their perspective on factors influencing patient involvement. In addition, patients were involved in pilot‐testing the statement set.
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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.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
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.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
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