OBJECTIVE: Visit-to-visit systolic blood pressure variability (BPV) is an important predictor of cardiovascular (CV) outcomes. The long-term effect of a period of blood pressure (BP) control, but with differential BPV, is uncertain. Morbidity and mortality follow-up of UK participants in the Anglo-Scandinavian Cardiac Outcomes Trial-Blood Pressure-Lowering Arm has been extended for up to 21 years to determine the CV impact of mean systolic blood pressure (SBP) control and BPV during the trial, and amongst those allocated to amlodipine- and atenolol-based treatment.
METHODS: Eight thousand five hundred and eighty hypertensive participants (4305 assigned to amlodipine ± perindopril-based and 4275 to atenolol ± diuretic-based treatment during the in-trial period (median 5.5 years) were followed for up to 21 years (median 17.4 years), using linked hospital and mortality records. A subgroup of participants (n = 2156) was followed up 6 years after the trial closure with a self-administered questionnaire and a clinic visit. In-trial mean SBP and standard deviation of visit-to-visit SBP as a measure of BPV, were measured using >100 000 BP measurements. Cox proportional hazard models were used to estimate the risk [hazard ratios (HRs)], associated with (i) mean with SBP and BPV during the in-trial period, for the CV endpoints occurring after the end of the trial and (ii) randomly assigned treatment to events following randomization, for the first occurrence of pre-specified CV outcomes.
RESULTS: Using BP data from the in-trial period, in the post-trial period, although mean SBP was a predictor of CV outcomes {HR per 10 mmHg, 1.14 [95% confidence interval (CI) 1.10-1.17], P < .001}, systolic BPV independent of mean SBP was a strong predictor of CV events [HR per 5 mmHg 1.22 (95% CI 1.18-1.26), P < .001] and predicted events even in participants with well-controlled BP. During 21-year follow-up, those on amlodipine-based compared with atenolol-based in-trial treatment had significantly reduced risk of stroke [HR 0.82 (95% CI 0.72-0.93), P = .003], total CV events [HR 0.93 (95% CI 0.88-0.98), P = .008], total coronary events [HR 0.92 (95% CI 0.86-0.99), P = .024], and atrial fibrillation [HR 0.91 (95% CI 0.83-0.99), P = .030], with weaker evidence of a difference in CV mortality [HR 0.91 (95% CI 0.82-1.01), P = .073]. There was no significant difference in the incidence of non-fatal myocardial infarction and fatal coronary heart disease, heart failure, and all-cause mortality.
CONCLUSIONS: Systolic BPV is a strong predictor of CV outcome, even in those with controlled SBP. The long-term benefits of amlodipine-based treatment compared with atenolol-based treatment in reducing CV events appear to be primarily mediated by an effect on systolic BPV during the trial period.

UNASSIGNED: 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.
UNASSIGNED: 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.
UNASSIGNED: 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).
UNASSIGNED: 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.
For many people living with long-term health conditions or disabilities, community-based social care services (like, home care) enable them to maintain independence, stay connected, and to live well. For families and friends who care for someone (‘carers’), these services may also help them. They may allow carers to continue in paid employment and to have time for hobbies, friendships, to stay healthy, and connect with others in a similar situation. An important question is what type(s) of community-based services, best support people and their carers. To find this out, we need a way of measuring the effect services have on people’s lives. The Adult Social Care Outcomes Toolkit (ASCOT) is a questionnaire that asks people about aspects of their life that might be affected by social care services (for example, having control over everyday life). This questionnaire has already been used by researchers and care providers to review how well social care services support people. There is also another version of the questionnaire called the ASCOT-Carer, which looks at aspects of life that are important to carers. There has been interest in culturally adapting and translating these measures into other languages. However, there are different ways of establishing how well a translated version relates back to the original. This is important to make sure that the new version is measuring what we expect it to. In this paper, we compare different ways of understanding the information collected using the ASCOT and ASCOT-Carer in England. This will inform how to approach the testing of ASCOT (and other similar measures) that have been translated into new languages. It also helps us to understand how different aspects of life that are supported by social care services are related to each other. This can inform our understanding of people’s needs and how to best support them.

OBJECTIVE: We developed preference weights of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) in Japan.
METHODS: We 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.
RESULTS: The 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.
CONCLUSIONS: We 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.

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.
De groeiende groep thuiswonende ouderen in Nederland vraagt om een goede ondersteuning door inzet van de juiste diensten, zoals huishoudelijke hulp of dagbesteding. Het bepalen van belangrijke uitkomsten is daarin cruciaal en hiervoor zijn brede uitkomsten in termen van kwaliteit van leven (KvL) relevant, waarbij gekeken wordt naar de invloed van diensten op iemands mogelijkheden of capabilities. In dit artikel worden de ontwikkeling en inhoud van de Adult Social Care Outcomes Toolkit (Nederlandstalige versie, ASCOT-NL) en de Extended Quality of Life Tool (EQLT) beschreven en de toepassingsmogelijkheden in de evaluatie van zorg belicht. Beide instrumenten beogen effecten van zorg op KvL van thuiswonende ouderen te meten op meerdere relevante domeinen. De ASCOT-NL kent acht domeinen; de EQLT bevat deze acht domeinen en voegt daar zes domeinen aan toe, hetgeen resulteert in totaal veertien domeinen. De domeinen van de ASCOT-NL zijn gebaseerd op de doelen van sociale ondersteuning en zorg; de aanvullende domeinen van de EQLT zijn gebaseerd op empirisch onderzoek naar KvL vanuit het perspectief van thuiswonende ouderen en de manier waarop zorg kan bijdragen aan KvL.

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.

The Adult Social Care Outcomes Toolkit four response-level interview schedule (ASCOT INT4) for service users was translated into Finnish. The aim of this paper was to investigate the construct validity and structural characteristics of the Finnish ASCOT. We used data from a face-to-face interview survey of older people receiving publicly funded home care services, which was conducted in 2016-2017 (n = 493), excluding missing values and proxy respondents (n = 334). Chi-square tests, adjusted residuals and analyses of variance were used to examine hypothesised associations between each attribute and a number of relevant variables regarding health and well-being, disabilities, living arrangements, social contact and support, experience of service use, and the nature of the locality and environment. Structural characteristics were explored using exploratory factor analysis and Cronbach\'s alpha test. The EQ-5D-3L and ASCOT were moderately correlated (r = 0.429; p < 0.001). The ASCOT attributes were statistically positively related to the overall quality of life. For other tested variables, we found a high number of significant associations with the control over daily life, occupation, social participation, and personal cleanliness attributes, but fewer significant associations with the other attributes. Cronbach\'s alpha was 0.697 and a single factor was extracted. This assessment provides evidence to support the construct validity of the Finnish ASCOT. The results support the introduction of the Finnish ASCOT into Finland for use in practical applications. Future research on its reliability would be useful.

OBJECTIVE: The 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).
METHODS: Translation 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.
RESULTS: Cognitive 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.
CONCLUSIONS: The 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.

Quality of care has multiple dimensions, including safety, experience and effectiveness. Understanding the relationship between these dimensions is important for policy and practice, since there may be both synergies and trade-offs that occur when attempting to maximise them. For long-term care effectiveness is understood as care that promotes a good quality of life (QoL). Here we investigate the relationship between care experience and QoL in long-term home care. Data from a cross-sectional survey conducted in 2008/09 were analysed using fractional response regression models to explore the relationship between experience, measured through items capturing perceptions of the care delivery process, and patient-reported QoL-outcomes, measured using ASCOT, controlling for relevant individual characteristics. The analysis included 14,172 people aged 65 and over using home care services from across England. After controlling for the confounding effect of individual characteristics, a ten percentage point increase in overall process quality is found to be associated on average with a 2.13 percentage point increase in ASCOT. Interpersonal aspects of care, such as the responsiveness and caring behaviour of staff, have a stronger relationship with ASCOT than those related to the organisation of care by the provider, such as timekeeping and continuity of care, with a ten percentage point increase in the former associated on average with a 1.9 percentage point increase in ASCOT and a ten percentage point increase in the latter associated on average with a 0.3 percentage point increase in ASCOT. Perceptions of care experience, particularly those related to the interpersonal care aspects, have an important association with QoL-outcomes. Measures of the experience of interpersonal aspects of care may therefore be useful indicators of QoL-outcomes for the routine monitoring of long-term home care services. Although associated, the two dimensions are distinctive and for policymakers there is value in assessing both care experience and QoL-outcomes.

OBJECTIVE: In developed countries, progressive rapid aging is increasing the need for social care. This study aimed to determine Japanese utility weights for the Adult Social Care Outcomes Toolkit (ASCOT) four-level self-completion questionnaire (SCT4).
METHODS: We recruited 1050 Japanese respondents from the general population, stratified by sex and age, from five major cities. In the best-worst scaling (BWS) phase, respondents ranked various social care-related quality of life (SCRQoL) states as \"best,\" \"worst,\" \"second-best,\" or \"second-worst,\" as per the ASCOT. Then, respondents were asked to evaluate eight different SCRQOL states by composite time-trade off (cTTO). A mixed logit model was used to analyze BWS data. The association between cTTO and latent BWS scores was used to estimate a scoring formula that would convert BWS scores to SC-QALY (social care quality-adjusted life year) scores.
RESULTS: Japanese BWS weightings for ASCOT-SCT4 were successfully estimated and found generally consistent with the UK utility weights. However, coefficients on level 3 of \"Control over daily life\" and \"Occupation\" domains differed markedly between Japan and the UK. The worst Japanese SCRQoL state was lower than that for the UK, as Japanese cTTO results showed more negative valuations. In general, Japanese SC-QALY score (for more than 90% of health states) was lower than that for the UK.
CONCLUSIONS: We successfully obtained Japanese utility weights for ASCOT SCT4. This will contribute to the measurement and understanding of social care outcomes.

OBJECTIVE: Traditionally, researchers have relied on eliciting preferences through face-to-face interviews. Recently, there has been a shift towards using internet-based methods. Different methods of data collection may be a source of variation in the results. In this study, we compare the preferences for the Adult Social Care Outcomes Toolkit (ASCOT) service user measure elicited using best-worst scaling (BWS) via a face-to-face interview and an online survey.
METHODS: Data were collected from a representative sample of the general population in England. The respondents (face-to-face: n = 500; online: n = 1001) completed a survey, which included the BWS experiment involving the ASCOT measure. Each respondent received eight best-worst scenarios and made four choices (best, second best, worst, second worst) in each scenario. Multinomial logit regressions were undertaken to analyse the data taking into account differences in the characteristics of the two samples and the repeated nature of the data.
RESULTS: We initially found a number of small significant differences in preferences between the two methods across all ASCOT domains. These differences were substantially reduced-from 15 to 5 out of 30 coefficients being different at the 5% level-and remained small in value after controlling for differences in observable and unobservable characteristics of the two samples.
CONCLUSIONS: This comparison demonstrates that face-to-face and internet surveys may lead to fairly similar preferences for social care-related quality of life when differences in sample characteristics are controlled for. With or without a constant sampling frame, studies should carefully design the BWS exercise and provide similar levels of clarification to participants in each survey to minimise the amount of error variance in the choice process.