Adult Social Care Outcomes Toolkit Research Articles

Cost-effectiveness of the FindMyApps eHealth intervention vs. digital care as usual: results from a randomised controlled trial

Objectives Despite growing interest, the cost-effectiveness of eHealth interventions for supporting quality of life of people with dementia and their caregivers remains unclear. This study evaluated the cost-effectiveness of the FindMyApps intervention, compared to digital care-as-usual. FindMyApps aims to help people with dementia and their caregivers find and learn to use tablet apps that may support social participation and self-management of people with dementia and sense of competence of caregivers. Method A randomised controlled trial (Netherlands Trial Register NL8157) was conducted, including people with mild cognitive impairment (MCI) or mild dementia and their informal caregivers (FindMyApps n = 76, digital care-as-usual n = 74). Outcomes for people with MCI/dementia were Quality-Adjusted Life-Years (QALYs), calculated from EQ-5D-5L data and the Dutch tariff for utility scores, social participation (Maastricht Social Participation Profile) and quality of life (Adult Social Care Outcomes Toolkit), and for caregivers, QALYs and sense of competence (Short Sense of Competence Questionnaire). Societal costs were calculated using data collected with the RUD-lite instrument and the Dutch costing guideline. Multiple imputation was employed to fill in missing cost and effect data. Bootstrapped multilevel models were used to estimate incremental total societal costs and incremental effects between groups which were then used to calculate Incremental Cost-Effectiveness Ratios (ICERs). Cost-effectiveness acceptability curves were estimated. Results In the FindMyApps group, caregiver SSCQ scores were significantly higher compared to care-as-usual, n = 150, mean difference = 0.75, 95% CI [0.14, 1.38]. Other outcomes did not significantly differ between groups. Total societal costs for people with dementia were not significantly different, n = 150, mean difference = €-774, 95%CI [–2.643, .,079]. Total societal costs for caregivers were significantly lower in the FindMyApps group compared to care-as-usual, n = 150, mean difference = € −392, 95% CI [−1.254, −26], largely due to lower supportive care costs, mean difference = €−252, 95% CI [−1.009, 42]. For all outcomes, the probability that FindMyApps was cost-effective at a willingness-to-pay threshold of €0 per point of improvement was 0.72 for people with dementia and 0.93 for caregivers. Conclusion FindMyApps is a cost-effective intervention for supporting caregivers’ sense of competence. Further implementation of FindMyApps is warranted.

Comparison of the EQ-HWB and EQ-HWB-S With Other Preference-Based Measures Among United States Informal Caregivers

ObjectivesSeveral measures have been used or developed to capture the health and well-being of caregivers, including the EQ Health and Well-being (EQ-HWB) and its short form, EQ-HWB-S. This study aimed to evaluate the psychometric properties and construct validity of the EQ-HWB/EQ-HWB-S in a US caregiver population. MethodsA cross-sectional survey was conducted involving 504 caregivers. Eligible participants were 18+ years old, provided unpaid care to a relative/friend aged 18+ in the past 6 months, and spent on average of at least 1 hour per week caregiving. Survey included the following measures: EQ-HWB, Adult Social Care Outcomes Toolkit for Carers-Carer, CarerQol, and EQ-5D-5L. Psychometric properties were assessed using response distributions, floor/ceiling effects, Spearman’s correlation for convergent validity, and effect sizes (ES) for known-group validity based on caregiving situations and intensity. ResultsThe average age of caregivers was 49.2 (SD = 15.4), with 57.5% being female. More than half (54.4%) reported high caregiving intensity, and 68.3% lived with the care recipient. The EQ-HWB-S index showed a strong positive correlation with the EQ-5D-5L (rs = 0.72), Adult Social Care Outcomes Toolkit for Carers (rs = 0.54), and CarerQol (rs = 0.54) indices. Notably, the EQ-HWB-S index showed the largest ES among measures in differentiating caregiving scenarios with a large ES for caregiver’s general health (d = 1.00) and small ES for caregiving intensity (d = 0.39). ConclusionsResults support construct validity of EQ-HWB and EQ-HWB-S as measures for assessing health and well-being of adult informal caregivers in comparison with other validated instruments. Differing levels of known-group validity across anchors emphasize the importance of selecting appropriate measures for caregivers, depending on research question and/or intervention aims.

Mood Associated With Health- and Social Care-Related Quality of Life in Patients With Advanced Multiple Sclerosis.

Individuals with advanced multiple sclerosis (MS) have complex care requirements and are more likely to use long-term facilities. This study determined the associations between mood and social care-related quality of life (SCRQOL), and health-related quality of life (HRQOL) and examined the association between HRQOL and SCRQOL. Baseline data from a cohort study were used. Patients completed questionnaires, including the Hospital Anxiety and Depression Scale (HADS), Adult Social Care Outcomes Toolkit (ASCOT), and EuroQOL 5D-5L (EQ-5D-5L) and EQ-Visual Analogue Scale (EQ-VAS). Linear regression analyses were employed to assess the relationships between mood and both outcomes of QOL while controlling for relevant confounding factors (βs; 95% CI). The cross-sectional association between SCRQOL and HRQOL was examined using Pearson correlation coefficients (r). A total of 75 patients, with a mean age of 56.1 years and a disease duration of 17.3 years, were enrolled from a long-term care facility in the Netherlands. Results showed that after controlling for confounders, HADS is an independent determinant of ASCOT (βs = -.368; 95% CI, -.581 to -.154) and EQ-5D-5L (βs = -.297; 95% CI, -.507 to -.087). Also, there are significant but weak correlations between ASCOT and EQ-5D-5L (r = 0.242; 95% CI, .015-.468), between ASCOT and EQ-VAS (r = 0.230; 95% CI, .003-.457) and between EQ-5D-5L and EQ-VAS (r = 0.227; 95% CI, .000-.454). Mood, especially the depression component, is an important determinant of both HRQOL and SCRQOL in advanced MS. Focusing on mood in health care and social care may contribute to the improvement of QOL in a broader sense.

Bathing Adaptations in the Homes of Older Adults (BATH-OUT-2): study protocol for a randomised controlled trial, economic evaluation and process evaluation

BackgroundThe onset of disability in bathing is particularly important for older adults as it can be rapidly followed by disability in other daily activities; this may represent a judicious time point for intervention in order to improve health, well-being and associated quality of life. An important environmental and preventative intervention is housing adaptation, but there are often lengthy waiting times for statutory provision. In this randomised controlled trial (RCT), we aim to evaluate the effectiveness and cost-effectiveness of bathing adaptations compared to no adaptations and to explore the factors associated with routine and expedited implementation of bathing adaptations.MethodsBATH-OUT-2 is a multicentre, two-arm, parallel-group RCT. Adults aged 60 and over who are referred to their local authority for an accessible level access shower will be randomised, using pairwise randomisation, 1:1, to receive either an expedited provision of an accessible shower via the local authority or a usual care control waiting list. Participants will be followed up for a maximum of 12 months and will receive up to four follow-ups in this duration. The primary outcome will be the participant’s physical well-being, assessed by the Physical Component Summary score of the Short Form-36 (SF-36), 4 weeks after the intervention group receives the accessible shower. The secondary outcomes include the Mental Component Summary score of the SF-36, self-reported falls, health and social care resource use, health-related quality of life (EQ-5D-5L), social care-related quality of life (Adult Social Care Outcomes Toolkit (ASCOT)), fear of falling (Short Falls Efficacy Scale), independence in bathing (Barthel Index bathing question), independence in daily activities (Barthel Index) and perceived difficulty in bathing (0–100 scale). A mixed-methods process evaluation will comprise interviews with stakeholders and a survey of local authorities with social care responsibilities in England.DiscussionThe BATH-OUT-2 trial is designed so that the findings will inform future decisions regarding the provision of bathing adaptations for older adults. This trial has the potential to highlight, and then reduce, health inequalities associated with waiting times for bathing adaptations and to influence policies for older adults.Trial registrationISRCTN Registry ISRCTN48563324. Prospectively registered on 09/04/2021.

PCR171 Translation and Cross-Cultural Validation of the Chinese Version of Adult Social Care Outcomes Toolkit for Service Users in Hong Kong

PCR171 Translation and Cross-Cultural Validation of the Chinese Version of Adult Social Care Outcomes Toolkit for Service Users in Hong Kong

Measuring quality of life in care homes when self-report is challenging: the construct validity, structural characteristics and internal consistency of the mixed-methods adult social care outcomes toolkit.

The adult social care outcomes toolkit (ASCOT) measures social care-related quality of life (SCRQoL) using self-completion questionnaires and interviews. Many care home residents find such methods inaccessible, leading to a reliance on proxy-reporting. This study aimed to establish the psychometric properties of the mixed-methods toolkit [ASCOT-Care Homes, 4 outcome (CH4)] for measuring SCRQoL when residents cannot self-report. Two cross-sectional, mixed-methods studies were undertaken in care homes for older people in England between 2015 and 2020. We used the ASCOT-CH4 (observation, and interviews with residents and proxies) to collect information about SCRQoL and collected additional data on residents' needs and characteristics, and variables hypothesised to be related to SCRQoL.Hypothesis testing was applied to establish construct validity, Cronbach's alpha for internal consistency and exploratory factor analysis for structural validity. The combined dataset included 475 residents from 54 care homes (34 nursing, 20 residential). Half had a diagnosis of dementia. Less than a third of residents were able to complete an ASCOT interview. Observations and proxy interviews informed researcher ratings, meaning there were no missing ASCOT-CH4 scores. ASCOT-CH4 was found to be a weak unidimensional scale, consistent with other ASCOT measures, with acceptable internal consistency (α = 0.77, 8 items). Construct validity was supported by the findings. The ASCOT-CH4 is an alternative to conventional proxy-questionnaires for measuring the SCRQoL of care home residents, with good psychometric properties. A limitation is that users need a range of data collection skills. Future research should explore whether findings are replicable when data are collected by other researchers.

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?

PurposeIdentify 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.MethodsOnline 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.ResultsEight 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.ConclusionThe 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.

Exploring the structural characteristics of the Adult Social Care Outcomes Toolkit (ASCOT) and ASCOT-Carer.

Measurement models inform the approach to assess a measure's validity and also how a measure is understood, applied and interpreted. With preference-based measures (PBMs), it is generally accepted that they are formative; however, if they are applied without preferences, they may be reflective, formative or mixed. In this study, we sought to empirically test whether the reflective, formative or mixed measurement model best describes PBMs of social care-related quality of life (SCRQoL) - specifically, the ASCOT and ASCOT-Carer. We also explored the network approach, as an alternative. ASCOT and ASCOT-Carer data were analyzed using confirmatory factor analysis and Multiple Indicators Multiple Causes models to test reflective, formative or mixed measurement models, respectively. Network analysis of partial correlations using the Gaussian graphical model was also conducted. The results indicated that the reflective measurement model is the worst fit for ASCOT and ASCOT-Carer. The formative or mixed measurement models may apply to ASCOT. The mixed measurement model was the best fit for ASCOT-Carer. The network analysis indicated that the most important or influential items were Occupation and Personal cleanliness and comfort (ASCOT) and Time and space and Self-care (ASCOT-Carer). The ASCOT and ASCOT-Carer are best described as formative/mixed or mixed measurement models, respectively. These findings may guide the approach to the validation of cross-culturally adapted and translated versions. Specifically, we recommend that EFA be applied to establish structural characteristics, especially if the measure will be applied as a PBM and as a measure of SCRQoL. Network analysis may also provide further useful insights into structural characteristics.

Corrigendum to Assessing the Structural Characteristics of the Japanese Version of the Adult Social Care Outcomes Toolkit for Carers

Corrigendum to Assessing the Structural Characteristics of the Japanese Version of the Adult Social Care Outcomes Toolkit for Carers

Supporting the involvement of older adults with complex needs in evaluation of outcomes in long-term care at home programmes.

BackgroundIt is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs.AimThis study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care‐related quality of life.MethodWe used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed.ResultsWe started with the standard ASCOT questionnaire to assess the care‐related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met.ConclusionThere is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long‐term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person‐centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users.Patient or Public ContributionService users with dementia were involved in the design of the ‘Easy Read’ questionnaire used in the study.

Exploring the structural characteristics of the Adult Social Care Outcomes Toolkit (ASCOT) and ASCOT-Carer

Background: Measurement models inform the approach to assess a measure’s validity and also how a measure is understood, applied and interpreted. With preference-based measures, it is generally accepted that they are formative; however, if they are applied without preferences, they may be reflective, formative or mixed. In this study, we sought to empirically test whether the reflective, formative or mixed measurement model best describes PBMs of social care-related quality of life (ASCOT, ASCOT-Carer). We also explored the network approach, as an alternative. Methods: ASCOT and ASCOT-Carer data were analyzed using confirmatory factor analysis and Multiple Indicators Multiple Causes models to test reflective, formative or mixed measurement models, respectively. Network analysis of partial correlations using the Gaussian graphical model was also conducted. Results: The results indicated that the reflective measurement model is the worst fit for ASCOT and ASCOT-Carer. The formative or mixed models may apply to ASCOT. The mixed model was the best fit for ASCOT-Carer. The network analysis indicated that the most important or influential items were Occupation and Personal cleanliness and comfort (ASCOT) and Time and space and Self-care (ASCOT-Carer). Conclusions: The ASCOT and ASCOT-Carer are best described as formative/mixed or mixed models, respectively. These findings may guide the approach to the validation of cross-culturally adapted and translated versions. Specifically, we recommend that EFA be applied to establish structural characteristics, especially if the measure will be applied as a PBM and as a measure of SCRQoL. Network analysis may also provide further useful insights into structural characteristics.

Japanese preference weights of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

PurposeWe developed preference weights of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) in Japan.MethodsWe used best–worst scaling (BWS) and composite time trade-off (cTTO) to determine the preference weights for ASCOT-Carer states in the general population. TTO values were applied to convert the BWS scores to utilities. The sample number was approximately 1000 for the BWS survey and 200 for the TTO survey. Whereas face-to-face surveys by computer-assisted interviewing were adopted for the TTO tasks, a web-based survey was used for the BWS tasks. In the BWS tasks, the ASCOT-Carer states were presented, and the “best,” “worst,” “second best,” and “second worst” domains in a profile were selected. A mixed logit model was applied to the BWS data.ResultsThe respondents’ background was similar to that of the general population, although the number of people in the age and sex categories was equal. The preference weights for calculating the utilities of the ASCOT-Carer states were estimated. The estimated utilities of the ASCOT-Carer states were distributed between 1 and 0.02. All preference weights were consistent. The item with the highest preference weight was level 1 in the “space and time to be yourself.” The least preferred item was level 4 in the “space and time to be yourself” and “control over daily life” domains.ConclusionWe established Japanese preference weights for ASCOT-Carer states, the first weights of an Asian country. The estimated utilities can contribute to the measurement of caregivers’ social care-related QoL and perform of cost-effectiveness analyses.

Systematic review of 29 self-report instruments for assessing quality of life in older adults receiving aged care services

BackgroundQuality of life (QoL) outcomes are used to monitor quality of care for older adults accessing aged care services, yet it remains unclear which QoL instruments best meet older adults’,...

Care home residents’ quality of life and its association with CQC ratings and workforce issues: the MiCareHQ mixed-methods study

BackgroundCare home staff have a critical bearing on quality. The staff employed, the training they receive and how well they identify and manage residents’ needs are likely to influence outcomes. The Care Act 2014 (Great Britain.The Care Act 2014. London: The Stationery Office; 2014) requires services to improve ‘well-being’, but many residents cannot self-report and are at risk of exclusion from giving their views. The Adult Social Care Outcomes Toolkit enables social care-related quality of life to be measured using a mixed-methods approach. There is currently no equivalent way of measuring aspects of residents’ health-related quality of life. We developed new tools for measuring pain, anxiety and depression using a mixed-methods approach. We also explored the relationship between care home quality, residents’ outcomes, and the skill mix and employment conditions of the workforce who support them.ObjectivesThe objectives were to develop and test measures of pain, anxiety and depression for residents unable to self-report; to assess the extent to which regulator quality ratings reflect residents’ care-related quality of life; and to assess the relationship between aspects of the staffing of care homes and the quality of care homes.DesignThis was a mixed-methods study.SettingThe setting was care homes for older adults in England.ParticipantsCare home residents participated.ResultsThree measures of pain, anxiety and low mood were developed and tested, using a mixed-methods approach, with 182 care home residents in 20 care homes (nursing and residential). Psychometric testing found that the measures had good construct validity. The mixed-methods approach was both feasible and necessary with this population, as the majority of residents could not self-report. Using a combined data set (n = 475 residents in 54 homes) from this study and the Measuring Outcomes in Care Homes study (Towers AM, Palmer S, Smith N, Collins G, Allan S. A cross-sectional study exploring the relationship between regulator quality ratings and care home residents’ quality of life in England.Health Qual Life Outcomes2019;17:22) we found a significant positive association between residents’ social care-related quality of life and regulator (i.e. Care Quality Commission) quality ratings. Multivariate regression revealed that homes rated ‘good/outstanding’ are associated with a 12% improvement in mean current social care-related quality of life among residents who have higher levels of dependency. Secondary data analysis of a large, national sample of care homes over time assessed the impact of staffing and employment conditions on Care Quality Commission quality ratings. Higher wages and a higher prevalence of training in both dementia and dignity-/person-centred care were positively associated with care quality, whereas high staff turnover and job vacancy rates had a significant negative association. A 10% increase in the average care worker wage increased the likelihood of a ‘good/outstanding’ rating by 7%.LimitationsNo care homes rated as inadequate were recruited to the study.ConclusionsThe most dependent residents gain the most from homes rated ‘good/outstanding’. However, measuring the needs and outcomes of these residents is challenging, as many cannot self-report. A mixed-methods approach can reduce methodological exclusion and an over-reliance on proxies. Improving working conditions and reducing staff turnover may be associated with better outcomes for residents.Future workFurther work is required to explore the relationship between pain, anxiety and low mood and other indicators of care homes quality and to examine the relationship between wages, training and social care outcomes.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full inHealth Services and Delivery Research; Vol. 9, No. 19. See the NIHR Journals Library website for further project information.

Valuing informal carers\u2019 quality of life using best-worst scaling\u2014Finnish preference weights for the Adult \ufeffSocial Care Outcomes Toolkit for carers (ASCOT-Carer)

This study developed Finnish preference weights for the seven-attribute Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer) and investigated survey fatigue and learning in best-worst scaling (BWS) experiments. An online survey that included a BWS experiment using the ASCOT-Carer was completed by a sample from the general population in Finland. A block of eight BWS profiles describing different states from the ASCOT-Carer were randomly assigned to each respondent, who consecutively made four choices (best, worst, second best and second worst) per profile. The analysis panel data had 32,160 choices made by 1005 respondents. A scale multinomial logit (S-MNL) model was used to estimate preference weights for 28 ASCOT-Carer attribute levels. Fatigue and learning effects were examined as scale heterogeneity. Several specifications of the generalised MNL model were employed to ensure the stability of the preference estimates. The most and least-valued states were the top and bottom levels of the control over daily life attribute. The preference weights were not on a cardinal scale. We observed the position effect of the attributes on preferences associated with the best or second-best choices. A learning effect was found. The established preference weights can be used in evaluations of the effects of long-term care services and interventions on the quality of life of service users and caregivers. The learning effect implies a need to develop study designs that ensure equal consideration to all profiles (choice tasks) in a sequential choice experiment.

Assessing quality of life in older adults living at home: Overview and justification of fourteen relevant domains

An increasing group of older adults living at home in the Netherlands requires proper support through the use of services. Determining important outcomes is crucial in this respect. For this specific group, broad outcomes in terms of quality of life (QoL) are relevant, focusing on the influence of services on capabilities. This article describes the development and content of the ASCOT-NL (Adult Social Care Outcomes Toolkit, Dutch version) and the EQLT (Extended Quality of Life Tool), and highlights application possibilities in the evaluation of care. Both instruments aim to measure effects of care on QoL of elderly people living at home in multiple relevant domains. The ASCOT-NL has eight domains, the EQLT includes these eight domains and adds six domains, resulting in a total of fourteen domains. The domains of the ASCOT-NL are based on the goals of social support and care; the additional domains of the EQLT are based on empirical research on QoL from the perspective of older people living at home and how care can contribute to QoL.

Assessing the Structural Characteristics of the Japanese Version of the Adult Social Care Outcomes Toolkit for Carers

Due to the absence of standardized Quality of Life (QoL) measures for informal family caregivers of recipients of long-term care (LTC) in Japan, translation and cross-cultural adapted LTC outcome measures are needed for research and evaluation. In this study, we assessed the validity and reliability of the factor structure and response system of the translated and cross-culturally adapted Japanese version of the Adult Social Care Outcomes Toolkit for Carer (J-ASCOT-Carer). Participants were 872 informal family caregivers of adults who lived at home and required LTC services. Almost half (46%) of the participants were between 50 and 59 years old, 85% were employed, and 69% resided with their care recipients. We used the combined factor analysis and item response theory approach. Model fit indices included factor loading, path coefficients, root mean square error of approximation, standardized root mean square residual, and comparative fit index. This study confirmed the one factor structure that was identified in the original English version of the ASCOT-Carer. The values for the model fit indices indicated a good fit. Moreover, the validity and reliability of the response system were confirmed. Therefore, the J-ASCOT-Carer is a reliable assessment instrument to measure QoL of Japanese caregivers of adults requiring LTC.

Do You Prefer Safety to Social Participation? Finnish Population-Based Preference Weights for the Adult Social Care Outcomes Toolkit (ASCOT) for Service Users.

Introduction. The Adult Social Care Outcomes Toolkit (ASCOT) was developed in England to measure people’s social care–related quality of life (SCRQoL). Objectives. The aim of this article is to estimate preference weights for the Finnish ASCOT for service users (ASCOT). In addition, we tested for learning and fatigue effects in the choice experiment used to elicit the preference weights. Methods. The analysis data (n = 1000 individuals) were obtained from an online survey sample of the Finnish adult general population using gender, age, and region as quotas. The questionnaire included a best-worst scaling (BWS) experiment using ASCOT. Each respondent sequentially selected four alternatives (best, worst; second-best, second-worst) for eight BWS tasks (n = 32,000 choice observations). A scale multinomial logit model was used to estimate the preference parameters and to test for fatigue and learning. Results. The most and least preferred attribute-levels were “I have as much control over my daily life as I want” and “I have no control over my daily life.” The preference weights were not on a cardinal scale. The ordering effect was related to the second-best choices. Learning effect was in the last four tasks. Conclusions. This study has developed a set of preference weights for the ASCOT instrument in Finland, which can be used for investigating outcomes of social care interventions on adult populations. The learning effect calls for the development of study designs that reduce possible bias relating to preference uncertainty at the beginning of sequential BWS tasks. It also supports the adaptation of a modelling strategy in which the sequence of tasks is explicitly modelled as a scale factor.

What\u2019s important when caring for a loved one? Population-based preference weights for the Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) for Austria

PurposeThe Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) can be used to assess long-term care-related quality of life (LTC-QoL) of adult informal carers of persons using LTC services. The ASCOT-Carer instrument has been translated into several languages, but preference weights reflecting the relative importance of different outcome states are only available for England so far. In this paper, we estimated preference weights for the German version of the ASCOT-Carer for Austria and investigated the value people place on different QoL-outcome states.MethodsWe used data from a best–worst scaling (BWS) experiment and estimated a scale-adjusted multinomial logit (S-MNL) model to elicit preference weights for the ASCOT-Carer domain-levels. Data were collected using an online survey of the Austrian general population (n = 1001).ResultsTop levels in the domains of ‘Space and time to be yourself’, ‘Occupation’ and ‘Control over daily life’ were perceived as providing the highest utility, and states with high needs in the same domains seen as particularly undesirable. ‘Personal safety’ was the only domain where levels were roughly equidistant. In all other domains, the difference between the top two levels (‘ideal state’ and ‘no needs’) was very small.ConclusionThe paper provides preference weights for the German version of ASCOT-Carer to be used in Austrian populations. Furthermore, the results give insight into which LTC-QoL-outcomes are seen as particularly (un)desirable, and may therefore help to better tailor services directed at informal carers and the persons they care for.

Translation, cultural adaptation and construct validity of the German version of the Adult Social Care Outcomes Toolkit for informal Carers (German ASCOT-Carer)

PurposeThe Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), developed in England, measures the effects of long-term care (LTC) services and carer support on informal carers’ quality of life (QoL). Translations of the ASCOT-Carer into other languages are useful for national and cross-national studies. The aim of this paper was to report on the translation and cultural adaptation of the original English ASCOT-Carer into German, to assess its content validity and to test for its construct validity (convergent and discriminative/known-group validity).MethodsTranslation and cultural adaptation followed the ISPOR TCA guidelines. As part of the translation and adaptation process, five cognitive debriefing interviews with informal carers were used for evaluating linguistic and content validity. In addition, a sample of 344 informal carers of older adults, who received home care services in Austria, was used for hypothesis testing as suggested by the COSMIN checklist to assess convergent and discriminative/known-group validity as part of construct validity.ResultsCognitive interviews provided evidence that questions and response options of the German ASCOT-Carer were understood as intended. Associations between ASCOT-Carer scores/domains and related outcome measures (convergent validity) and expected groups of informal carers and the care service users they care for (discriminative validity) supported construct validity of the translated instrument.ConclusionThe German ASCOT-Carer instrument meets the required standards for content and construct validity which supports its usefulness for (cross-)national studies on LTC-service-related QoL-outcomes in informal carers. Research is encouraged to assess further measurement properties of the translated instrument.