The factors associated with care-related quality of life of adults with intellectual disabilities in England: implications for policy and practice

Over the last three decades, quality of life (QoL) has been advocated as an indicator of social care outcomes for adults with intellectual disabilities. In England, the Adult Social Care Survey (ASCS) is conducted annually by local authorities to contribute to the evidence base of the care-related QoL of people receiving publicly-funded adult social care. This study explores relationships between QoL and non-care related factors to identify relationships that could inform social care policy and practice. Cross-sectional data collected from 13,642 adults who participated in the 2011 and 2012 ASCS were analysed using regression to explore the factors associated with QoL measured using the Adult Social Care Outcomes Toolkit (ASCOT). Self-rated health, rating of the suitability of home design and anxiety/depression were all found to be significantly associated with ASCOT. Other individual and survey completion factors were also found to have weak significant relationships with ASCOT. The models also indicate that there was an increase in overall ASCOT-QoL and in five of the eight ASCOT domains (Personal comfort and cleanliness, Safety, Social participation, Occupation and Dignity) between 2011 and 2012. These findings demonstrate the potential value of QoL data for informing policy for people with intellectual disabilities by identifying key factors associated with QoL, the characteristics of those at risk of lower QoL, and QoL domains that could be targeted for improvement over time. Future research should establish causal relationships and explore the risk-adjustment of scores to account for variation outside of the control of social care support

Exploring the feasibility and validity of a pragmatic approach to estimating the impact of long-term care: The ‘expected’ ASCOT method

Context: Measuring the impact of long-term Care (LTC) is essential to ensure effective allocation of limited resources. Objectives: We explored the feasibility and validity of a pragmatic approach to evaluation, known as the counterfactual self-estimation of programme participants (CSEPP). CSEPP forms part of the Adult Social Care Outcomes Toolkit (ASCOT), and is referred to as the ‘expected’ method since participants estimate their expected quality of life in the absence of services. Methods: We used survey data from interviews with 748 LTC users in 22 English local authorities. Questions on self- and interviewer-assessed understanding of the ‘expected’ questions were used to assess feasibility. Construct validity was assessed by examining hypothesised associations between the expected score and individual characteristics. Bias was assessed by comparing the expected impact estimate to one produced using Forder et al.’s (2014) instrumental variables approach on the same dataset. Findings: We found evidence that the expected method was feasible and the self-estimated counterfactual outcome score valid. There were indications that the method is less appropriate for some groups and it may slightly overestimate the impact of LTC. Limitations: Due to the opportunistic design, exploration of the method’s appropriateness for people with mental health problems was limited. The assumption of the between-methods comparison that the instrumental variables estimate of the effect of LTC is unbiased is unlikely to be true. Implications: The expected method is a promising tool for the LTC context, but more research is needed to understand potential sources of bias and its feasibility with certain groups

Validity and test-retest reliability of the self-completion Adult Social Care Outcomes Toolkit (ASCOT-SCT4) with adults with long-term physical, sensory and mental health conditions in England

Background: The Adult Social Care Outcomes Toolkit (ASCOT-SCT4) is a multi-attribute utility index designed for the evaluation of long-term social care services. The measure comprises eight attributes that capture aspects of social care-related quality of life. The instrument has previously been validated with a sample of older adults who used home care services in England. This paper aims to demonstrate the instrument’s test-retest reliability and provide evidence for its validity in a diverse sample of adults who use publicly-funded, community-based social care in England. Methods: A survey of 770 social care service users was conducted in England. A subsample of 100 services users participated in a follow-up interview between 7 and 21 days after baseline. Spearman rank correlation coefficients between the ASCOT-SCT4 index score and the EQ-5D-3L, the ICECAP-A or ICECAP-O and overall quality of life were used to assess convergent validity. Data on variables hypothesised to be related to the ASCOT-SCT4 index score, as well as rating of individual attributes, were also collected. Hypothesised relationships were tested using one-way ANOVA or Fisher’s exact test. Test-retest reliability was assessed using the intra-class correlation coefficient for the ASCOTSCT4 index score at baseline and follow-up. Results: There were moderate to strong correlations between the ASCOT-SCT4 index and EQ-5D-3L, the ICECAP-A or ICECAP-O, and overall quality of life (all correlations ? 0.3). The construct validity was further supported by statistically significant hypothesised relationships between the ASCOTSCT4 index and individual characteristics in univariate and multivariate analysis. There was also further evidence for the construct validity for the revised Food and drink and Dignity items. The testretest reliability was considered to be good (ICC=0.783; 95% CI: 0.678-0.857). Conclusions: The ASCOT-SCT4 index has good test-retest reliability for adults with physical or sensory disabilities who use social care services. The index score and the attributes appear to be valid for adults receiving social care for support reasons connected to underlying mental health problems, and physical or sensory disabilities. Further reliability testing with a wider sample of social care users is warranted, as is further exploration of the relationship between the ASCOT-SCT4, ICECAP-A/O and EQ-5D-3L indices

Identifying the impact of adult social care: interpreting outcomes data for use in the Adult Social Care Outcomes Framework.

The primary aim of this IIASC study is to develop outcome indicators that better reflect the contributions made by adult social care. Specifically, the IIASC study aims to identify a way by which data collected from the ASCS and SACE could be used to generate a measure of ‘added value’ reflecting the impact of support provided by LAs on social care-related outcomes. The IIASC study collected in-depth information from service users and carers across 22 local authorities (LAs) in England. By including a wide range of measures of social care service use and non-service-related factors, the study aims to identify the best adjustment methodology to ensure a fair comparison between organisations and over time, and to provide recommendations for the use of this measure and the supplementary items to be collected in the ASCS and SACE. The study does not aim to address theoretical questions on the use of outcome measures in adult social care

Dutch translation and cross-cultural validation of the Adult Social Care Outcomes Toolkit (ASCOT)

Background: The Adult Social Care Outcomes Toolkit was developed to measure outcomes of social care in England. In this study, we translated the four level self-completion version (SCT-4) of the ASCOT for use in the Netherlands and performed a cross-cultural validation. Methods: The ASCOT SCT-4 was translated into Dutch following international guidelines, including two forward and back translations. The resulting version was pilot tested among frail older adults using think-aloud interviews. Furthermore, using a subsample of the Dutch ACT-study, we investigated test-retest reliability and construct validity and compared response distributions with data from a comparable English study. Results: The pilot tests showed that translated items were in general understood as intended, that most items were reliable, and that the response distributions of the Dutch translation and associations with other measures were comparable to the original English version. Based on the results of the pilot tests, some small modifications and a revision of the Dignity items were proposed for the final translation, which were approved by the ASCOT development team. The complete original English version and the final Dutch translation can be obtained after registration on the ASCOT website (http://www.pssru.ac.uk/ascot). Conclusions: This study provides preliminary evidence that the Dutch translation of the ASCOT is valid, reliable and comparable to the original English version. We recommend further research to confirm the validity of the modified Dutch ASCOT translation

Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer)

Background: The ASCOT-Carer is a self-report instrument designed to measure social care-related quality of life (SCRQoL). This article presents the psychometric testing and validation of the ASCOT-Carer four response-level interview (INT4) in a sample of unpaid carers of adults who receive publicly-funded social care services in England. Methods: Unpaid carers were identified through a survey of users of publicly-funded social care services in England. 387 carers completed a face-to-face or telephone interview. Data on variables hypothesised to be related to SCRQoL (for example, characteristics of the carer, cared-for person and care situation) and measures of carer experience, strain, health-related quality of life and overall QoL were collected. Relationships between these variables and overall SCRQoL score were evaluated through correlation, ANOVA and regression analysis to test the construct validity of the scale. Internal reliability was assessed using Cronbach’s alpha and feasibility by the number of missing responses. Results: The construct validity was supported by statistically significant relationships between SCRQoL and scores on instruments of related constructs, as well as with characteristics of the carer and care recipient in univariate and multivariate analyses. A Cronbach’s alpha of 0.87 (7 items) indicates that the internal reliability of the instrument is satisfactory and a low number of missing responses (<1%) indicates a high level of acceptance. Conclusions: The results provide evidence to support the construct validity, factor structure, internal reliability and feasibility of the ASCOT-Carer INT4 as an instrument for measuring social care-related quality of life of unpaid carers who care for adults with a variety of long-term conditions, disability or problems related to old age

Photon dominated regions in the spiral arms of M83 and M51

We present CI 3P1-3P0 spectra at four spiral arm positions and the nuclei of the nearby galaxies M83 and M51 obtained at the JCMT. This data is complemented with maps of CO 1-0, 2-1, and 3-2, and ISO/LWS far-infrared data of CII (158 micron), OI (63 micron), and NII (122 micron) allowing for the investigation of a complete set of all major gas cooling lines. From the intensity of the NII line, we estimate that between 15% and 30% of the observed CII emission originate from the dense ionized phase of the ISM. The analysis indicates that emission from the diffuse ionized medium is negligible. In combination with the FIR dust continuum, we find gas heating efficiencies below ~0.21% in the nuclei, and between 0.25 and 0.36% at the outer positions. Comparison with models of photon-dominated regions (PDRs) of Kaufman et al. (1999) with the standard ratios OI(63)/CII_PDR and (OI(63)+CII_PDR) vs. TIR, the total infrared intensity, yields two solutions. The physically most plausible solution exhibits slightly lower densities and higher FUV fields than found when using a full set of line ratios, CII_PDR/CI(1-0), CI(1-0)/CO(3-2), CO(3-2)/CO(1-0), CII/CO(3-2), and, OI(63)/CII_PDR. The best fits to the latter ratios yield densities of 10^4 cm^-3 and FUV fields of ~G_0=20-30 times the average interstellar field without much variation. At the outer positions, the observed total infrared intensities are in perfect agreement with the derived best fitting FUV intensities. The ratio of the two intensities lies at 4-5 at the nuclei, indicating the presence of other mechanisms heating the dust

Dust and gas power-spectrum in M33 (HERM33ES)

Power spectra of de-projected images of late-type galaxies in gas and/or dust emission are very useful diagnostics of the dynamics and stability of their interstellar medium. Previous studies have shown that the power spectra can be approximated as two power-laws, a shallow one at large scales (larger than 500 pc) and a steeper one at small scales, with the break between the two corresponding to the line-of-sight thickness of the galaxy disk. We present a thorough analysis of the power spectra of the dust and gas emission at several wavelengths in the nearby galaxy M33. In particular, we use the recently obtained images at five wavelengths by PACS and SPIRE onboard Herschel. The large dynamical range (2-3 dex in scale) of most images allow us to determine clearly the change in slopes from -1.5 to -4, with some variations with wavelength. The break scale is increasing with wavelength, from 100 pc at 24 and 100micron to 350 pc at 500micron, suggesting that the cool dust lies in a thicker disk than the warm dust, may be due to star formation more confined to the plane. The slope at small scale tends to be steeper at longer wavelength, meaning that the warmer dust is more concentrated in clumps. Numerical simulations of an isolated late-type galaxy, rich in gas and with no bulge, like M33, are carried out, in order to better interpret these observed results. Varying the star formation and feedback parameters, it is possible to obtain a range of power-spectra, with two power-law slopes and breaks, which nicely bracket the data. The small-scale power-law is indeed reflecting the 3D behaviour of the gas layer, steepening strongly while the feedback smoothes the structures, by increasing the gas turbulence. M33 appears to correspond to a fiducial model with an SFR of $\sim$ 0.7 Mo/yr, with 10% supernovae energy coupled to the gas kinematics.Comment: 11 pages, 24 figures, accepted in Astronomy & Astrophysic

Measuring the outcomes of long-term care for unpaid carers: Comparing the ASCOT-Carer, Carer Experience Scale and EQ-5D-3L

Background: The ASCOT-Carer and Carer Experience Scale are instruments designed to capture aspects of quality of life ‘beyond health’ for family carers. The aim of this study was to compare and validate these two carer care-related measures, with a secondary aim to compare both instruments to the three-level EQ-5D (EQ-5D-3L) measure of health-related quality of life. Methods: An interview survey was conducted with 387 carers of adults who used long-term care (also known as social care) support in England. Construct validity by hypothesis testing was assessed using Pearson correlation coefficient. Exploratory factor analysis was also applied to investigate the dimensionality of the combined items from the ASCOT-Carer and CES (as measures of carer quality of life ‘beyond health’) and the EQ-5D (as a measure of health-related quality of life). Results: In the construct validity analysis, hypothesised differences in correlations were observed with two exceptions. The exploratory factor analysis indicated that the ASCOT-Carer, CES and EQ-5D-3L items loaded onto three separate factors. The first factor comprised the seven ASCOT-Carer items plus two CES items (activities outside caring, support from friends and family). The second factor comprised three of the six CES items (fulfilment from caring, control over caring and getting on with the person you care for). The third factor included four of the five EQ-5D-3L items. Conclusion: The findings indicate that the ASCOT-Carer, CES and EQ-5D-3L capture separate constructs of social care-related quality of life (ASCOT-Carer) and carer experience (CES), which partially overlap in relation to activities outside caring and social support, and health-related quality of life (EQ-5D-3L). The ASCOT-Carer and CES are both promising measures for the evaluation of social care support for carers that capture aspects of quality of life ‘beyond health’. The choice of whether to use the ASCOT-Carer or CES depends on the study objectives