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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-3 L, 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 ASCOT-SCT4 index score at baseline and follow-up.Results: There were moderate to strong correlations between the ASCOT-SCT4 index and EQ-5D-3 L, 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 ASCOT-SCT4 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 test-retest 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-3 L indices. [ABSTRACT FROM AUTHOR]

Background: An in-depth qualitative exploration of uncertainty in systemic lupus erythematosus (SLE) and rheumatoid arthritis (RA) led to the development of a five-domain conceptual framework of patient uncertainty in these two conditions. The purpose of this study was to develop and evaluate a new patient-reported outcome (PRO) instrument for patient uncertainty in SLE and RA on the basis of this empirically developed conceptual framework.Methods: Cognitive debriefing interviews were conducted to pre-test the initial items generated on the basis of the preliminary qualitative exploration of patient uncertainty in SLE and RA. Two separate field tests were conducted in five hospital sites to evaluate the measurement properties of the new instrument; the first to identify and form scales, and the second to assess measurement properties of the final version in an independent sample. Psychometric evaluation was conducted in line with the Rasch Measurement Theory (RMT), examining the extent to which sample to scale targeting was satisfactory, measurement scales were constructed effectively and the sample was measured successfully. Traditional psychometric techniques were also used to provide complementary analyses best understood by clinicians.Results: Pre-testing supported the relevance, acceptability and comprehensibility of the initial items. Findings indicated that the Patient Uncertainty Questionnaire for Rheumatology PUQ-R instrument fulfilled the expectations of RMT to a large extent (including person separation index 0.73 - 0.91). The PUQ-R comprises 49 items across five scales; symptoms and flares (14 items), medication (11 items), trust in doctor (8 items), self-management (6 items) and impact (10 items) which further displayed excellent measurement properties as assessed against the traditional psychometric criteria (including Cronbach's alpha 0.82 - 0.93).Conclusion: The PUQ-R has been developed and evaluated specifically for patients with SLE and RA. By quantifying uncertainty, the PUQ-R has the potential to support evidence-based management programmes and research. [ABSTRACT FROM AUTHOR]

Background: The EQ-5D is a brief, generic measure of health status that can be easily incorporated into population health surveys. There are two versions of the EQ-5D for use in adult populations, one with 3 response levels in each of the instrument's 5 dimensions (EQ-5D-3L) and one with 5 levels in each dimension (EQ-5D-5L). We compared the two versions as measures of self-reported health status in representative samples of the English general population.Methods: EQ-5D-5L data were available from 996 respondents selected at random from residential postcodes who took part in the EQ-5D-5L value set for England study. EQ-5D-3L data were available from 7294 participants included in the 2012 Health Survey for England. Responses on the 3L and 5L versions of EQ-5D were compared by examining score distributions on the two versions, both in terms of the profile (dimensions) and the EQ-VAS. To determine the extent of variations in score according to respondent characteristics, we analysed health status reporting on the descriptive profile, EQ-5D Index, and EQ-VAS of both versions of EQ-5D by age, sex, and educational background. We used X (2) to test for differences between respondent categories when analyzing EQ-5D profile data and the t test when analyzing EQ-5D Index and VAS scores.Results: The 5L version of EQ-5D led to a considerably reduced ceiling effect and a larger proportion of respondents reporting severe health problems compared to the 3L. The 5L version also led to the use of a wider spread of health states; just 3 health states on the 3L covered 75 % of the sample, compared to 12 states on the 5L. Both versions showed poorer health status in older respondents, females, and those in a lower educational category and the EQ-5D-5L descriptive system, though not the Index or VAS, discriminated better between age groups than the 3L. There were no appreciable differences between the two versions in their ability to discriminate between groups defined by gender or educational level.Conclusions: The new, expanded 5L version of EQ-5D may be a more useful instrument for the measurement of health status in population health surveys than the original 3L version. [ABSTRACT FROM AUTHOR]