How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?

PURPOSE: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. METHODS: Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. RESULTS: Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. CONCLUSION: The content of the three instruments appears relevant in an Australian setting. The influence of care recipient's health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.

Head-to-Head Comparison of the Psychometric Properties of 3 Carer-Related Preference-Based Instruments.

OBJECTIVES: To compare the psychometric properties of the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer), the Carer Experience Scale (CES), and the Care-related Quality of Life (CarerQol) to inform the choice of instrument in future studies. METHODS: Data were derived from a 2018 online survey of informal carers in Australia. Reliability was assessed via internal consistency (Cronbach alpha, α) and test-retest reliability (intraclass correlation coefficient, ICC) for respondents who self-reported no change in their quality of life as a carer over 2 weeks. Convergent validity was evaluated via predetermined hypotheses about associations (Spearman's rank correlation) with existing, validated measures. Discriminative validity was assessed based on the ability of the carer-related scores to distinguish between different informal care situations (Mann-Whitney U, Kruskal-Wallis one-way analysis of variance). RESULTS: Data from 500 carers were analyzed. The ASCOT-Carer demonstrated a higher degree of internal consistency, possibly due to a unidimensional structure, and test-retest reliability than the CarerQol and CES (α = 0.87, 0.65, 0.59; ICC, 0.87, 0.67, 0.81, respectively). All 3 instruments exhibited convergent validity and detected statistically significant associations between carer-related scores and different informal care situations, except for the CarerQol-7D and sole carer status. CONCLUSIONS: The ASCOT-Carer, CarerQol, and CES performed reasonably well psychometrically; the ASCOT-Carer exhibited the best psychometric properties overall in this sample of Australian informal carers. Findings should be used in conjunction with consideration of research goals, carer population, targeted carer-related constructs, and prevailing perspectives on the economic evaluation to inform choice of instrument in future studies.

The awareness, visibility and support for young carers across Europe: a Delphi study.

BACKGROUND: Across Europe, young carers (YCs) and their need for support receive limited attention in the media, policy and empirical research, even though, similar to adult carers, they also provide care to ill family members. The Delphi study, a qualitative research methodology, which provides the focus for this article, had the overall aim of exploring existing successful strategies to support YCs. Compared to YCs, even less is known about adolescent young carers (AYCs), a group that is in a critical life transition phase. The study forms part of an EU Horizon 2020 funded research project on AYCs aged 15-17 years old. METHODS: A two-round Delphi study was conducted with 66 experts on YCs from 10 European countries. Topics included: (i) visibility and awareness-raising of YCs at local, regional, and national levels, (ii) current interventions to support YCs, and (iii) future strategies to support YCs. RESULTS: Experts reported a lack of visibility and awareness about YCs in general, and AYCs in particular. Although awareness is slowly increasing in most countries, with the UK ranked highest, experts acknowledged that it remains challenging to identify YCs in many countries. Furthermore, the level and type of support available for YCs differs, with most countries mainly offering support on a local level. Diverse views were expressed regarding future strategies to support YCs. Experts highlighted the importance of specific legislation to formalise the rights of YCs, and the issue of whether young people should be safeguarded from caregiving or if this should be considered part of regular family life. They also emphasised the relevance of available integrated support services for YCs, including schools, family, health and social care. CONCLUSIONS: In most European countries, there is a lack of awareness and visibility on YCs. Identification of YCs is a crucial first step and there is need for a common definition of YCs, together with greater opportunities for young adults to identify themselves as YCs.

Time Is Money: Investigating the Value of Leisure Time and Unpaid Work.

OBJECTIVES: Lost unpaid work and leisure time of patients due to ill health often are not included in economic evaluations, even in those taking a societal perspective. This study investigated the monetary value of unpaid work and leisure time to enable the inclusion of patient time in economic evaluations. METHODS: A contingent valuation study was performed to derive monetary values of unpaid work and leisure time. Data were collected with an online survey among a representative sample of people 18 years and older in the Netherlands in terms of age, sex, and educational level in January 2014 (n = 316). Willingness-to-accept (WTA) and willingness-to-pay (WTP) values were analyzed with a two-part model. First, a logistic regression model investigated the willingness to trade in the WTA/WTP tasks. Second, a log-transformed ordinary least squares regression model analyzed the level of positive WTA and WTP values. RESULTS: The average WTA value for unpaid work was €15.83, and the average WTA value for leisure time was €15.86. The mean WTP value for leisure time was €9.37 when traded against unpaid work, and €9.56 when traded against paid work. Differences in monetary values of unpaid work and leisure time were partly explained by respondents' income, educational level, age, and household composition. CONCLUSIONS: Researchers can adhere to the societal perspective by also including the value of hours of lost unpaid work and leisure time in economic evaluations. As a first indication of its value, we suggest applying the WTA value of €16.

[The conversation with the patient is essential for good pharmacotherapeutic care]. / Het gesprek met de patiënt is essentieel voor goede farmacotherapeutische zorg.

Frail elderly with polypharmacy are at greater risk of preventable medication-related health damage. To improve medication safety, the healthcare field prepared, in consultation with the Dutch Health Care Inspectorate, a number of guidelines and standards containing conditions for safe prescribing. According to these standards the active involvement of patients by health care professionals is essential for good pharmacotherapeutic care. However, two studies with patients show that there is still room for improvement. According to patients, they can be (even) better informed about changes in their medication. Also the caregivers could communicate more clearly who is the central contact point and who is ultimately responsible for the medication. Patients are not sufficiently informed on this. Furthermore, there is uncertainty about how and why medication reviews are performed. More explanation to patients about this is desirable. In addition, patients experience that keeping their medication list up to date and transferring medication data between health care providers could be improved. Finally, a group of patients welcomes the opportunity to co-decide on changes in their medication. In order to prescribe safely, it is crucial that caregivers actively involve patients in pharmacotherapeutic care and really enter into conversation with them about their medication.

Measuring caregiver outcomes in palliative care: a construct validation study of two instruments for use in economic evaluations.

PURPOSE: Providing care to patients nearing the end of life can place a considerable burden on caregivers. Hence, policy decisions on interventions in palliative care should be guided by information on this burden. This study investigates construct validation of two preference-based caregiver outcome instruments suitable for economic evaluations: the Carer Experience Scale (CES) and the Care-related Quality of Life (CarerQol) instrument. Moreover, this study reports caregiver experiences in end-of-life care. METHODS: Data were collected with written questionnaires among caregivers of patients receiving palliative care services in the Southern metropolitan area of Adelaide, South Australia (n = 97). The effect of caregiving on caregivers was measured with the CES, CarerQol, Process Utility (PU) and Caregiver Strain Index (CSI). Convergent, discriminative and clinical validity were studied. RESULTS: As hypothesized, higher negative effect of caregiving measured on the CES was associated with higher negative effect on the CarerQol. Both the CES and CarerQol were associated in the expected positive direction with less strain from caregiving (CSI), more positive care experiences and more PU from caring. Caregivers' and care recipients' health status and duration of caregiving were negatively associated with caring experiences. CONCLUSIONS: Our findings suggest that the CES and CarerQol validly assess the effect of caregiving on caregivers in end-of-life care. Economic evaluations in end-of-life care should attempt to incorporate such instruments to provide a more holistic assessment of the true impact of interventions, especially where family and friends are heavily involved in caregiving.

Adolescent Young Carers Who Provide Care to Siblings.

A child's disability, long-term illness, or mental ill-health is known to affect siblings' health, social life, school engagement, and quality of life. This article addresses a research gap by its focus on young sibling carers and the impact of providing care to a sibling. A cross-national survey study was conducted in 2018-2019 (Italy, the Netherlands, Slovenia, Sweden, Switzerland, the UK) to examine the incidence of adolescent sibling carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1444 of them provided care to family members with health-related conditions. Out of these, 286 were identified as Sibling Carers and 668 as Parent Carers, while 181 had both sibling(s) and parent(s) with health-related conditions, and thus were identified as Sibling-Parent Carers. Sibling Carers and Sibling-Parent Carers carried out higher levels of caring activities compared to Parent Carers. They reported both positive aspects of caring, such as increased maturity, and negative aspects, such as mental ill-health, impact on schooling and a lack of support. To reduce the negative aspects of a sibling carer role, it is important to recognise them and to implement early preventive measures and formal support.

Measuring the impact of caregiving on informal carers: a construct validation study of the CarerQol instrument.

BACKGROUND: Informal caregivers provide a significant part of the total care needed by ill or disabled persons. Although informal care is often the preferred option of those who provide and those who receive informal care, caring can nevertheless be very straining. This study investigates construct validation of an instrument of the impact of caregiving, the CarerQol. METHODS: Data was collected among adult caregivers (n = 1,244) selected from the general population using an online questionnaire in October 2010, in the Netherlands. The CarerQol measures and values the impact of informal care. The CarerQol measures subjective burden (CarerQol-7D) and well-being (CarerQol-VAS). Construct validation comprised clinical, convergent and discriminative validity tests. RESULTS: Clinical validity was supported by statistically significant associations of CarerQol-VAS and caregivers' health, income and employment status, care recipients' health, and the relationship between caregiver and care recipient. Convergent validity was supported by positive associations of CarerQol-VAS with the two positive CarerQol-7D dimensions (fulfillment and support) and negative associations with the five negative CarerQol-7D dimensions (relational problems, mental health problems, problems combining daily activities, financial problems and physical health problems). Moreover, CarerQol-VAS was negatively associated with other instruments measuring caregiving burden. CONCLUSIONS: Construct validity tests in a large, heterogeneous sample of caregivers show that the CarerQol validly measures the impact of caregiving. The CarerQol can be used in informal care research and economic evaluations of health care interventions. Hence, its use can facilitate informed decision making in health care.

Production Losses due to Absenteeism and Presenteeism: The Influence of Compensation Mechanisms and Multiplier Effects.

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.

Adolescent Young Carers Who Provide Help and Support to Friends.

Prior studies emphasize the value of friends' support for children/adolescents who have a disability or suffer from mental ill-health or a long-term illness. However, few studies have explored how a caring role affects those young friend carers themselves. This paper addresses a gap in the research by focusing on this hitherto neglected group of young carers to explore the impact of providing care to friends. An online survey was employed for a cross-national study conducted in 2018-2019 in Sweden, Italy, Slovenia, the Netherlands, Switzerland, and the United Kingdom to examine the incidence of adolescent young friend carers, the extent of care they provide, and their self-reported health, well-being, and school situation. The survey was completed by 7146 adolescents, aged 15-17, and 1121 of them provided care to a friend with a health-related condition, most frequently mental ill-health. They carried out high levels of caring activities, and a quarter of them also provided care to a family member. They experienced both positive and negative aspects of caring. Nevertheless, in comparison with adolescents who provided care to family members, they reported more health problems, with a dominance of mental ill-health, and they received lower levels of support. Since adolescent friends play a valuable role for young people with health-related conditions, especially mental ill-health, it is important to find ways of optimizing their caring experiences in order that those adolescents who choose to care for a friend can do so without it having a negative impact on their own mental health, well-being, and life situation.

Obtaining preference scores for an abbreviated self-completion version of the Teen-Addiction Severity Index (ASC T-ASI) to value therapy outcomes of systemic family interventions: a discrete choice experiment.

BACKGROUND: Systemic family interventions for adolescents with problems of substance use and/or delinquency are increasingly focused subject of economic evaluations. Treatment effects go beyond improvements in commonly measured health-related quality of life (HRQOL). The Teen-Addiction Severity Index (T-ASI) was identified as capable of capturing these broad outcomes. However, it lacks preference-based scores. An abbreviated self-completion version (ASC T-ASI) was created and validated, covering the T-ASI domains substance use, school, work, family, social relationships, justice, and mental health. This study aimed to obtain societal preference scores for the ASC T-ASI. METHODS: Preferences were elicited in a sample of the Dutch general adult population (n = 1500), using a web-based Discrete Choice Experiment. Choice tasks included two unlabeled alternatives with attributes and levels corresponding to the domains and levels of the ASC T-ASI. A pilot study (n = 106) informed priors, optimal presentation, and number of choice tasks applied in the main study. Data were analyzed using a mixed multinomial logit model. RESULTS: Preference scores were logically ordered, with lower scores for worse ASC T-ASI states. Scores were most influenced by reductions in problems concerning the domains substance use, mental health, justice, and family. Tariffs were calculated for each ASC T-ASI state, ranging from 0 (worst situation) to 1 (best situation). CONCLUSIONS: The tariffs enable preference-based assessments of the broad effects of systemic family interventions for adolescents with problems of substance use and/or delinquency. The outcome reflects addiction-related rather than health-related utility and can be used next to generic HRQOL instruments in relevant economic evaluations. Given the source used for the preferences, interpretations and valuation of scores require attention.

Visibility as a Key Dimension to Better Health-Related Quality of Life and Mental Health: Results of the European Union Funded "ME-WE" Online Survey Study on Adolescent Young Carers in Switzerland.

This paper examines the health-related quality of life (HRQL) and mental health of adolescent young carers (AYCs) aged 15-17 in Switzerland, based on data collected within the Horizon 2020 project 'Psychosocial support for promoting mental health and well-being among AYCs in Europe' (ME-WE). It addresses the following questions: (1) Which characteristics of AYCs are associated with lower HRQL and with higher level of mental health problems? (2) Do AYCs who are less visible and less supported report a lower HRQL and more mental health issues than other AYCs? A total of 2343 young people in Switzerland, amongst them 240 AYCs, completed an online survey. The results show that female AYCs and AYCs with Swiss nationality more often reported having mental health issues than their male and non-Swiss counterparts. Furthermore, the findings show a significant association between receiving support for themselves and visibility from their school or employer and the HRQL. Moreover, AYCs who reported that their school or employer knew about the situation also reported fewer mental health issues. These findings can inform recommendations for policy and practice to develop measures aimed at raising the visibility of AYCs, which is the first step for planning AYC tailored support.

Recruitment of Adolescent Young Carers to a Psychosocial Support Intervention Study in Six European Countries: Lessons Learned from the ME-WE Project.

Young carers provide a substantial amount of care to family members and support to friends, yet their situation has not been actively addressed in research and policy in many European countries or indeed globally. Awareness of their situation by professionals and among children and young carers themselves remains low overall. Thus, young carers remain a largely hidden group within society. This study reports and analyses the recruitment process in a multi-centre intervention study offering psychosocial support to adolescent young carers (AYCs) aged 15-17 years. A cluster-randomised controlled trial was designed, with recruitment taking place in Italy, the Netherlands, Slovenia, Sweden, Switzerland and the United Kingdom exploiting various channels, including partnerships with schools, health and social services and carers organisations. In total, 478 AYCs were recruited and, after screening failures, withdrawals and initial dropouts, 217 were enrolled and started the intervention. Challenges encountered in reaching, recruiting and retaining AYCs included low levels of awareness among AYCs, a low willingness to participate in study activities, uncertainty about the prevalence of AYCs, a limited school capacity to support the recruitment; COVID-19 spreading in 2020-2021 and related restrictions. Based on this experience, recommendations are put forward for how to better engage AYCs in research.

Research and Innovation for and with Adolescent Young Carers to Influence Policy and Practice-The European Union Funded "ME-WE" Project.

Young carers are children and adolescents who provide care to other family members or friends, taking over responsibilities that are usually associated with adulthood. There is emerging but still scarce knowledge worldwide about the phenomenon of young carers and the impact of a caring role on their health, social and personal development spheres. This paper provides an overview of the main results from the ME-WE project, which is the first European research and innovation project dedicated to adolescent young carers (AYCs) (15-17 years). The project methods relied on three main activities: (1) a systematization of knowledge (by means of a survey to AYCs, country case studies, Delphi study, literature review); (2) the co-design, implementation and evaluation of a primary prevention intervention addressing AYCs' mental health (by means of Blended Learning Networks and a clinical trial in six European countries); (3) the implementation of knowledge translation actions for dissemination, awareness, advocacy and lobbying (by means of national and international stakeholder networks, as well as traditional and new media). Project results substantially contributed to a better understanding of AYCs' conditions, needs and preferences, defined tailored support intervention (resilient to COVID-19 related restrictions), and significant improvements in national and European policies for AYCs.

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

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

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

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

Measuring Carer Outcomes in an Economic Evaluation: A Content Comparison of the Adult Social Care Outcomes Toolkit for Carers, Carer Experience Scale, and Care-Related Quality of Life Using Exploratory Factor Analysis.

Background. To incorporate the spillover effects experienced by carers providing informal care in health policy decisions, new carer-related preference-based measures have been developed for use in economic evaluation, which include the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Carer Experience Scale (CES), and Care-Related Quality of Life (CarerQoL). The aim of this study was to investigate the extent to which these 3 instruments measure complementary or overlapping constructs. Methods. Data were derived from an online survey undertaken with carers residing in Australia. An exploratory factor analysis was conducted to ascertain the underlying latent constructs of the 3 measures. Results. Data from 351 informal carers yielded a 5-factor model describing general quality of life outside caring, problems due to caring, fulfilment from caring, social support with caring, and relationship with the care recipient. Most of the ASCOT-Carer and the CarerQol items loaded onto the first and second factors, respectively. The greatest overlap was observed between CarerQol and CES items loading onto the other 3 shared common factors. Limitations. Online data collection resulted in inconsistent responses, which had to be removed to yield logical data. A convenience sampling approach may have compromised the generalizability of study findings. Conclusion. Although some overlap was observed, the 3 carer-related preference-based measures seem to tap into different constructs of carer-related quality of life and caring experiences and cannot be used interchangeably.

Positive and Negative Impacts of Caring among Adolescents Caring for Grandparents. Results from an Online Survey in Six European Countries and Implications for Future Research, Policy and Practice.

Although up to 8% of European youngsters carry out high-intensity care for a family member, adolescent young carers (AYCs), especially those caring for their grandparents (GrPs), remain an under-researched group. This study aimed at addressing the current knowledge gap by carrying out an online survey in Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the United Kingdom. The analysis included a final sample of 817 AYCs aged 15-17 years old. AYCs of grandparents (GrPs) were compared to AYCs of other care recipients (OCRs), in order to identify any difference in positive and negative caregiving outcomes and exposure factors between the two groups. Linear or logistic regression models were built, and multivariate analyses were repeated, including a fixed effect on the country variable. AYCs of GrPs experienced more positive caregiving outcomes than AYCs of OCRs across all six countries. Being female or non-binary, and having a migration background, were associated with more negative outcomes, regardless of the relationship with the care recipient. Further research on intergenerational caregiving outcomes is recommended for shaping measures and policies, which preserve the intergenerational emotional bonds, whilst protecting AYCs from inappropriate responsibilities, undermining their mental health and well-being.

Development of Population Tariffs for the CarerQol Instrument for Hungary, Poland and Slovenia: A Discrete Choice Experiment Study to Measure the Burden of Informal Caregiving.

BACKGROUND: The CarerQol instrument can be used in economic evaluations to measure the care-related quality of life of informal caregivers. Tariff sets are available for Australia, Germany, Sweden, the Netherlands, the UK, and the USA. OBJECTIVE: Our objective was to develop tariff sets for the CarerQol instrument for Hungary, Poland and Slovenia and to compare these with the existing value sets. METHODS: Discrete-choice experiments were carried out in Hungary, Poland and Slovenia. Data were collected through an online survey between November 2018 and January 2019, using representative samples of 1000 respondents per country. Tariffs were calculated from coefficient estimates from panel mixed multinomial logit models with random parameters. RESULTS: All seven CarerQol domains contributed significantly to the utility associated with different caregiving situations. Attributes valued highest were 'physical health' (tariffs for no problems were 15.6-21.8), 'mental health' (18.1-18.9) and 'fulfilment' (16.3-22.9). Value sets were comparable across the countries, although in Poland 'a lot of fulfilment' was valued higher (22.9) than in Hungary (16.3) and Slovenia (17.1). Compared with existing value sets, in the three Central European countries, 'fulfilment' was more important, whereas 'financial problems' were less important. CONCLUSION: For the first time in the Central and Eastern European region, country-specific tariffs are now available for the Hungarian, Polish and Slovenian versions of the CarerQol instrument. This facilitates inclusion of the impact of informal care in economic evaluations. Our results can be used to develop and evaluate country-specific health policy strategies to support informal caregivers. The differences found in informal care preferences highlight the limited transferability of CarerQol tariffs across European regions.

Summarizing Patient Preferences for the Competitive Landscape of Multiple Sclerosis Treatment Options.

Objective. Quantitatively summarize patient preferences for European licensed relapsing-remitting multiple sclerosis (RRMS) disease-modifying treatment (DMT) options. Methods. To identify and summarize the most important RRMS DMT characteristics, a literature review, exploratory physician interviews, patient focus groups, and confirmatory physician interviews were conducted in Germany, the United Kingdom, and the Netherlands. A discrete choice experiment (DCE) was developed and executed to measure patient preferences for the most important DMT characteristics. The resulting DCE data (n=799 and n=363 respondents in the United Kingdom and Germany, respectively) were analyzed using Bayesian mixed logit models. The estimated individual-level patient preferences were subsequently summarized using 3 additional analyses: the quality of the choice data was assessed using individual-level R2 estimates, individual-level preferences for the available DMTs were aggregated into DMT-specific preference shares, and a principal component analysis was performed to explain the patients' choice process. Results. DMT usage differed between RRMS patients in Germany and the United Kingdom but aggregate patient preferences were similar. Across countries, 42% of all patients preferred oral medications, 38% infusions, 16% injections, and 4% no DMT. The most often preferred DMT was natalizumab (26%) and oral DMT cladribine tablets (22%). The least often preferred were mitoxantrone and the beta-interferon injections (1%-3%). Patient preferences were strongly correlated with patients' MS disease duration and DMT experience, and differences in patient preferences could be summarized using 8 principle components that together explain 99% of the variation in patients' DMT preferences. Conclusion. This study summarizes patient preferences for the included DMTs, facilitates shared decision making along the dimensions that are relevant to RRMS patients, and introduces methods in the medical DCE literature that are ideally suited to summarize the impact of DMT introductions in preexisting treatment landscapes.