Conditional Process Modeling of the Relationship Among Self-Reliance, Loneliness, and Depressive Symptoms, and the Moderating Effect of Feeling Understood.

ABSTRACT: Self-reliance features as one of the notable male norms espoused by traditional masculine socialization. Strict adherence to a self-reliant attitude has been found to confer risk for depression and suicidality among men. Yet, little research has investigated the factors that may contribute to self-reliance having a negative impact for men. Using data from a large sample of Canadian men (N = 530), the present study examined the association between self-reliance and depression, while also assessing the roles of loneliness and not feeling understood as contributing factors in this process. Findings indicated that the moderated mediation model was significant, pointing to loneliness as a significant mediator in the association between self-reliance and depression. Furthermore, the findings revealed that not feeling understood moderated the relationship between self-reliance and loneliness, indicating that this association applies mainly to those men who do not feel understood by at least one important person in their life.

A core outcome set for randomised controlled trials of physical activity interventions: development and challenges.

BACKGROUND: Core outcome sets are standardised sets of outcomes that should be collected and reported for all clinical trials. They have been widely developed and are increasingly influential in clinical research, but despite this, their use in public health has been limited to date. The aim of this study was to develop a core outcome set for public health trials evaluating interventions to promote physical activity in the general adult population. METHODS: The core outcome set was developed using a three-stage approach: stage one: a review of literature to identify potential domains for inclusion in the core outcome set; stage two: a Delphi survey was carried out to reach consensus about which outcome domains to include in the core outcome set; and stage three: a second Delphi survey was conducted to determine how best to measure the outcome domains included in the core outcome set. RESULTS: A classification of 13 outcome domains of physical activity was developed (stage one). Twenty people completed round one of the first Delphi survey (stage two), reaching a consensus to include two domains in the core outcome set, 'device-based level of physical activity' (80.0%, n = 16) and 'health-related quality of life' (70.0%, n = 14). No further consensus on the remaining outcome domains was reached in round two. Nineteen people completed the second Delphi survey (stage three). Participants rated the accelerometer (mean rating = 3.89, on a scale of 1 (do not recommend) to 5 (highly recommend)) as the best device to measure level of physical activity, and the EQ-5D (73.7%, n = 14) as the most appropriate measure of health-related quality of life. CONCLUSIONS: This study has made progress towards the development of a core outcome set for use in physical activity trials, however, there was limited consensus about which domains to include. The development of the core outcome set was challenged by the need for trial-specific outcomes, and the complexities of collecting, processing and reporting device-based data.

Health-related masculine values, depression and suicide risk in men: associations among men with a history of childhood maltreatment.

BACKGROUND: Identification of masculine values associated with men's depression and suicide risk may generate new intervention targets for those with known static risk factors (e.g., exposure to childhood maltreatment). AIMS: To validate the factor structure of a measure of health-related masculine values and examine correlates relative to childhood maltreatment exposure. METHOD: Self-report data was collected from 530 Canadian men, mean age 47.91 years (SD = 14.51). RESULTS: Confirmatory factor analysis validated an abbreviated eight-item, two-factor model of the Intensions Masculine Values Scale (IMVS-8; CFI = .984, TLI = .977, RMSEA = .054, SRMR = .032). Cluster groups of low (n = 57), moderate (n = 206) and high (n = 267) adherence to these health-related masculine values were identified, equivalent on exposure to childhood maltreatment and previous mental health treatment. A multivariate group × maltreatment interaction was observed (p = .017) whereby males in the low cluster with a maltreatment history endorsed higher mood-related symptomology. This same pattern was observed in a univariate group × maltreatment interaction for suicide risk (p = .006). CONCLUSIONS: Health-related masculine values were associated with lower depression and suicide risk in men who have a history of childhood maltreatment. Future intervention studies should investigate whether development of health-related masculine values can reduce depression and suicide risk among men with a history of childhood maltreatment.

Views of health care professionals and policy-makers on the use of surveillance data to combat antimicrobial resistance.

BACKGROUND: Providing healthcare professionals with health surveillance data aims to support professional and organisational behaviour change. The UK Five Year Antimicrobial Resistance (AMR) Strategy 2013 to 2018 identified better access to and use of surveillance data as a key component. Our aim was to determine the extent to which data on antimicrobial use and resistance met the perceived needs of health care professionals and policy-makers at national, regional and local levels, and how provision could be improved. METHODS: We conducted 41 semi-structured interviews with national policy makers in the four Devolved Administrations and 71 interviews with health care professionals in six locations across the United Kingdom selected to achieve maximum variation in terms of population and health system characteristics. Transcripts were analysed thematically using a mix of a priori reasoning guided by the main topics in the interview guide together with themes emerging inductively from the data. Views were considered at three levels - primary care, secondary care and national - and in terms of availability of data, current uses, benefits, gaps and potential improvements. RESULTS: Respondents described a range of uses for prescribing and resistance data. The principal gaps identified were prescribing in private practice, internet prescribing and secondary care (where some hospitals did not have electronic prescribing systems). Some respondents under-estimated the range of data available. There was a perception that the responsibility for collecting and analysing data often rests with a few individuals who may lack sufficient time and appropriate skills. CONCLUSIONS: There is a need to raise awareness of data availability and the potential value of these data, and to ensure that data systems are more accessible. Any skills gap at local level in how to process and use data needs to be addressed. This requires an identification of the best methods to improve support and education relating to AMR data systems.

Type of Track and Trigger system and incidence of in-hospital cardiac arrest: an observational registry-based study.

BACKGROUND: Failure to recognise and respond to patient deterioration on hospital wards is a common cause of healthcare-related harm. If patients are not rescued and suffer a cardiac arrest as a result then only around 15% will survive. Track and Trigger systems have been introduced into the NHS to improve both identification and response to such patients. This study examines the association between the type of Track & Trigger System (TTS) (National Early Warning Score (NEWS) versus non-NEWS) and the mode of TTS (paper TTS versus electronic TTS) and incidence of in-hospital ward-based cardiac arrests (IHCA) attended by a resuscitation team. METHODS: TTS type and mode was retrospectively collected at hospital level from 106 NHS acute hospitals in England between 2009 to 2015 via an organisational survey. Poisson regression and logistic regression models, adjusted for case-mix, temporal trends and seasonality were used to determine the association between TTS and hospital-level ward-based IHCA and survival rates. RESULTS: The NEWS was introduced in England in 2012 and by 2015, three-fifths of hospitals had adopted it. One fifth of hospitals had instituted an electronic TTS by 2015. Between 2009 and 2015 the incidence of IHCA fell. Introduction or use of NEWS in a hospital was associated with a reduction of 9.4% in the rate of ward-based IHCA compared to non-NEWS systems (incidence rate ratio 0.906, p < 0.001). The use of an electronic TTS was also associated with a reduction of 9.8% in the rate of IHCA compared with paper-based TTS (incidence rate ratio 0.902, p = 0.009). There was no change in hospital survival. CONCLUSIONS: The introduction of standardised TTS and electronic TTS have the potential to reduce ward-based IHCA. This is likely to be via a range of mechanisms from early intervention to institution of treatment limits. The lack of association with survival may reflect the complexity of response to triggering of the afferent arm of the rapid response system.

Mapping Canadian Men's Recent and Intended Health Behavior Changes Through the Don't Change Much Electronic Health Program.

BACKGROUND: Although evaluation studies confirm the strong potential of men's electronic health (eHealth) programs, there have been calls to more fully understand acceptability, engagement, and behavior change to guide future work. Relatedly, mapping of behavior changes using health promotion theories including the transtheoretical model (or stages of change) has been recommended to build a translatable empirical base to advance design and evaluation considerations for men's eHealth programs. OBJECTIVE: This study aimed to use a benchmark sample as a reference group to map the recent and intended health behavior changes in Canadian men who use the Don't Change Much (DCM) eHealth program. The hypothesis being tested was that increased exposure to DCM would be positively associated with men's recent and intended health behavior changes. METHODS: DCM users (n=863) were sampled for demographic data and self-reported recent and intended health behavior changes. Respondents also reported their usage (frequency and duration) for each of the 3 DCM components (web, newsletter, and social media) and were allocated to limited exposure (257/863, 29.8%), low exposure (431/863, 49.9%), and high exposure (175/863, 20.3%) subgroups. A benchmark sample (n=2000), comprising respondents who had not accessed DCM provided a reference group. Bivariate analysis of recent and intended health behavior changes and DCM exposure levels were used to compute the strength of association between the independent variables (exposure levels) and the 10 categorical dependent variables (recent and intended health behavior changes). Binary logistic regression models were computed for each of the 10 recent and intended health behavior changes. Linear regression was used to model the association between the number of recent and intended changes and the level of exposure to DCM. RESULTS: Compared with the benchmark reference group, DCM high-exposure respondents had significantly increased odds for 9 of the 10 health behavior changes, with the largest effect size observed for Changed diet or Improved eating habits (odds ratio [OR] 5.628, 95% CI 3.932-8.055). High-exposure respondents also had significantly increased odds for 9 intended health changes, with the largest effect sizes observed for Reduce stress level (OR 4.282, 95% CI 3.086-5.941). Moderate effect size (goodness of fit) was observed for increased total number of recent (F12,2850=25.52; P.001; adjusted R2=.093) and intended health behavior changes (F12,2850=36.30; P.001; adjusted R2=.129) among high-exposure respondents. CONCLUSIONS: DCM respondents contrasted the predominately precontemplative benchmark sample mapping across the contemplative, preparation, and action stages of the transtheoretical health behavior change model. Almost 10% of variation in the recent and 13% of variation in the intended health behavior changes can be explained by DCM exposure and demographic factors, indicating the acceptability of this men's eHealth resource.

Canadian men's health stigma, masculine role norms and lifestyle behaviors.

Men are at high risk for both morbidity and premature mortality from several of the most common serious diseases. Although numerous factors have been identified to explain men's risk, this study focused on the relationship between lifestyle behaviors, health-related self-stigma and masculine role norms. An age and location stratified sample of 2000 Canadian men completed measures assessing five lifestyle behaviors (smoking, alcohol use, sleep, diet and exercise), a screen for depression, and measures of self-stigma and masculine role norms. The results showed that elements of both health-related self-stigma and masculine role norms were associated with increased risk for being above the clinical threshold for four of the lifestyle behaviors and depression. The most frequent and largest relationships were associated with exercise and depression. The total number of lifestyle behaviors for which participants were above the clinical cut-points was also associated with self-stigma and masculine role norms. These findings demonstrate the importance of health-related self-stigma and masculine role norms as potential barriers to men's health and well-being.

Canadian Men's Health Literacy: A Nationally Representative Study.

Though men's health promotion has attracted increased research attention, conspicuously absent have been empirical insights to health literacy levels within and across male subgroups. Recent advancements in the measurement of health literacy have made available avenues for evaluating individual and social determinants of health literacy. Important insights can be drawn to detail patterns and diversity among men as a means to informing the design, implementation, and evaluation of tailored health promotion programs. Drawing on 2000 Canada-based men's responses to the Health Literacy Questionnaire, correlations between demographic variables and six health literacy scales are described. Low income, low education, and living alone were associated with men's low health literacy, with the strongest effect sizes for the "Social support for health" and "Actively engaged with health care professionals" scales. Multiple linear regressions confirmed low income as the strongest predictor of men's low health literacy in all the scales except "Appraisal of health information." Low income, self-identifying as gay, bisexual, or other, and living alone were strongly predictive of low scores on the "Social support for health" scale. The findings affirm the importance of considering men's health literacy and inequities to advance effective men's health promotion programs.

DEMQOL and DEMQOL-Proxy: a Rasch analysis among those diagnosed with dementia.

BACKGROUND: In previous work we concluded that DEMQOL and DEMQOL-Proxy can provide robust measurement of HRQL in dementia when scores are derived from analysis using the Rasch model. As the study sample included people with mild cognitive impairment, we undertook a replication study in the subsample with a diagnosis of dementia (PWD). PWD constitute the population for whom DEMQOL and DEMQOL-Proxy were originally developed. METHODS: We conducted a Rasch model analysis using the RUMM2030 software to re-evaluate DEMQOL (441 PWD) and DEMQOL-Proxy (342 family carers). We evaluated scale to sample targeting, ordering of item thresholds, item fit to the model, and differential item functioning (sex, age, severity, relationship), local independence, unidimensionality and reliability. RESULTS: For both DEMQOL and DEMQOL-Proxy, results were highly similar to the results in the original sample. We found the same problems with content and response options. CONCLUSIONS: DEMQOL and DEMQOL-Proxy can provide robust measurement of HRQL in people with a diagnosis of dementia when scores are derived from analysis using the Rasch model. As in the wider sample, the problems identified with content and response options require qualitative investigation in order to improve the scoring of DEMQOL and DEMQOL-Proxy.

Cost-effectiveness analysis of English memory assessment services 2 years after first consultation for patients with dementia.

OBJECTIVES: This paper aims to compare changes over 2 years in patients' health-related quality of life (HRQL) with the health and social care costs of diagnosis and treatment of people newly referred to memory assessment services (MAS). METHODS: We analysed observational data from 1318 patients referred to 69 MAS who completed resource use and HRQL questionnaires at baseline 3, 6, 12, and 24 months. We reported mean differences in HRQL (disease-specific DEMQOL and generic EQ-5D-3 L), quality-adjusted life years (QALYs), costs and cost-effectiveness between baseline, and 2-year follow-up. RESULTS: Two years after referral to MAS, patients reported a higher DEMQOL score (mean gain 4.47, 95% confidence interval, 3.08-5.90) and EQ-5D-3 L (0.014, -0.011 to 0.039). Mean total costs and QALYs over 24 months was £2411 (£1721-£2873) and 0.027 (0.003-0.051), respectively. Assuming that patients' HRQL would not have altered over the 2 years had they not attended MAS, these outcomes suggest an incremental cost-effectiveness ratio of £89 546 (£38 123-£145 864) based on changes in EQ-5D-3 L. If we assumed that patients' HRQL would have declined by about 10% over this period had they not attended MAS, the cost-effectiveness ratio would be £25 056. The largest MAS (N = 32; 46%) with over 50 new patients a month were more likely to be cost-effective than smaller ones (P < 0.01). CONCLUSIONS: MAS are effective and can be cost-effective for diagnosing and treating people with suspected dementia. Large variations in costs between clinics suggest that many MAS could improve their cost-effectiveness.

Caregiver burden and quality of life 2 years after attendance at a memory clinic.

OBJECTIVES: We aimed to describe (1) the burden and health-related quality of life (HRQL) of informal caregivers of new patients attending a memory assessment service (MAS), (2) changes in these outcomes over 2 years, and (3) satisfaction with services. METHODS: Informal caregivers of patients attending one of 73 MASs throughout England completed questionnaires at the patient's first appointment, and 6 and 12 months later. Participants from 30 of these MASs were also followed up at 24 months. Questionnaires covered caregivers' sociodemographic characteristics, Zarit Burden Interview, EQ-5D-3L, and satisfaction with services. We used multivariable linear regression to assess relationships between burden, HRQL, and caregiver and patient characteristics. RESULTS: Of 1020 caregivers at baseline, 569 were followed up at 6 months, 452 at 12 months, and 187 at 24 months. There was a small increase in caregiver burden over 2 years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socio-economic deprivation, which was associated with larger increases in burden at 2 years. Caregivers' HRQL was weakly associated with burden and showed a small reduction over time (0.2 SD). Most caregivers were satisfied with services, but caregivers who were not satisfied with the services they received reported greater increases in burden. CONCLUSIONS: Increases in caregiver burden and reductions in HRQL appear to be small over the first 2 years after attending a MAS. However, the longer term impact on caregivers and those they care for needs investigating, as do strategies to reduce their burden.

Caregiver burden and quality of life two years after attendance at a memory clinic.

OBJECTIVES: We aimed to describe 1) the burden and HRQL of informal caregivers of new patients attending a memory assessment service (MAS), 2) changes in these outcomes over two years and 3) satisfaction with services. METHODS: Informal caregivers of patients attending one of 73 MASs throughout England completed questionnaires at the patient's first appointment, and 6 and 12 months later. Participants from 30 of these MASs were also followed up at 24 months. Questionnaires covered caregivers' sociodemographic characteristics, Zarit Burden Interview, EQ-5D-3L and satisfaction with services. We used multivariable linear regression to assess relationships between burden, HRQL and caregiver and patient characteristics. RESULTS: Of 1020 caregivers at baseline, 569 were followed up at 6 months, 452 at 12 months and 187 at 24 months. There was a small increase in caregiver burden over two years (effect size 0.30 SD). These changes were not associated with most caregiver or patient characteristics, except socioeconomic deprivation which was associated with larger increases in burden at two years. Caregivers' HRQL was weakly associated with burden and showed a small reduction over time (0.2 SD). Most caregivers were satisfied with services but caregivers who were not satisfied with the services they received reported greater increases in burden. CONCLUSIONS: Increases in caregiver burden and reductions in HRQL appear to be small over the first two years after attending a MAS. However, the longer-term impact on caregivers and those they care for needs investigating, as do strategies to reduce their burden.

Is the effectiveness of memory assessment services associated with their structural and process characteristics?

OBJECTIVES: The aim of this study was to investigate whether structural and process characteristics of memory assessment services (MASs) are associated with outcomes (changes in patients' health-related quality of life (HRQL), carers' HRQL and carers' burden) over the first 6 months following the first appointment. METHODS: Data from 785 patients referred to 69 MASs and 511 of their lay carers, collected at the first appointment and 6 months later. Data on MAS characteristics were collected using a questionnaire at baseline. We used multilevel linear regression models to explore the associations of patients' HRQL and carers' outcomes with structural and process characteristics of MASs. Analyses were conducted on the full sample of patients and carers, and separately on those patients diagnosed with dementia. RESULTS: None of the structural (skill mix, workload, volume, provision of clinical assessments and provision of psychosocial support) or process (waiting time, length and number of appointments, anti-dementia drug use and psychosocial interventions use) characteristics included in the analyses were associated with patients' or carers' outcomes at 6 months, apart from the presence of allied health professionals (AHPs), which was associated with a DEMQOL score 2.7 points higher. When only those with a diagnosis of dementia were considered, the association with presence of AHPs was no longer observed. CONCLUSIONS: Apart from involving AHPs, alterations to the way MASs are structured or function appear unlikely to improve their effectiveness in improving patients' and carers' HRQL. It is possible that the characteristics of MASs may influence patients' and carers' experience, but this was not studied. Copyright © 2017 John Wiley & Sons, Ltd.

The cost of diagnosis and early support in patients with cognitive decline.

OBJECTIVE: Recent research indicates considerable heterogeneity in the provision of memory assessment services (MAS). However, little is known on the extent of variation in the costs of the services MAS provide. We investigated the costs of supporting patients with suspected dementia, including assessment and support over the following 6 months. METHODS: Clinic costs were estimated on the basis of an organisational survey reporting staff roll, grade and activities. Costs of primary health and social care were estimated from questionnaire data reported by carers of patients at baseline, 3 and 6 months after referral. RESULTS: Mean monthly staff costs at MAS were £73 000. Imaging at assessment costs an additional £3500 per month. Monthly clinic cost per new patient assessed varied from £320 to £5400 across clinics. Additional primary health and social care costs of £130-220 a month between baseline and 6 months were reported by carers. Costs of pharmacological and non-pharmacological treatments reported by carers were small. Informal care costs dwarfed health and social care costs when valued at a modest unit cost. The overall mean cost of supporting a patient for 6 months varied from £1600 to £2500 dependent on assumptions regarding the proportion of MAS intervention and review costs accrued at 6 months. CONCLUSIONS: There is considerable variation in the intensity and associated costs of services provided by MAS. Further research should ascertain to what extent such variation is associated with differences in patient outcomes. Copyright © 2016 John Wiley & Sons, Ltd.

Memory assessment services and health-related quality of life: 1-year follow-up.

OBJECTIVES: Our group has already demonstrated that patients' health-related quality of life (HRQL) improves in the first 6 months after their first appointment at memory assessment services (MASs), but the sustainability of such gains is unknown. We aimed to describe changes in patients' HRQL at 12 months after their first MAS appointment and to examine associations with patient and MAS characteristics. METHODS: We collected data from 702 patients and 452 lay caregivers at the first appointment and 12 months later. Multivariable linear regression was used to examine the relationships of change in HRQL (self-reported and proxy-reported) with patients' characteristics and use of post-diagnostic interventions, and multilevel models were used to analyse the relationships of HRQL with MAS characteristics. RESULTS: In the whole group, self-reported HRQL improved over 12 months (+3.5 points, 95% CI 2.7 to 4.2). Among people diagnosed with dementia, improvement in HRQL was more than double that among those with mild cognitive impairment or no diagnosis. Proxy-reported HRQL improved only in those diagnosed with dementia (+1.2 points, 95% CI 0.2 to 2.2). Changes in HRQL were not associated with any patient characteristics. The only feature of MASs associated with larger improvements in HRQL was the presence of advisory and support staff. CONCLUSIONS: Improvements in HRQL observed at 6 months are maintained up to 1 year after the first MAS appointment, more so among those who receive a diagnosis of dementia. Continued follow-up will determine if the improvement is even longer lasting.

Agreement between retrospectively and contemporaneously collected patient-reported outcome measures (PROMs) in hip and knee replacement patients.

PURPOSE: To investigate the relationship between retrospectively and contemporaneously collected patient-reported outcome measures (PROMs) and the influence on this relationship of patients' age and socio-economic status and the length of time. METHODS: Patients undergoing hip or knee replacement in four hospitals who had completed a pre-operative questionnaire were invited to recall their pre-operative health status shortly after surgery. The questionnaires included a disease-specific (Oxford Hip Score; Oxford Knee Score) and generic (EQ-5D-3L) PROM. Consistency and absolute agreement between contemporary and retrospective reports were investigated using intraclass correlations (ICCs). Differences were visualised using Bland-Altman plots. Linear regression analysis explored whether retrospective can predict contemporary PROMs. RESULTS: Patients' recalled health statuses were similar to their contemporaneous reports, with no significant systematic bias. Absolute agreement for disease-specific PROMs was very strong (ICC 0.82) and stronger than for the generic PROM (ICC 0.60, 0.62). Agreement was consistently strong across the range of severity of a patient's condition, age and socio-economic status. Patients' age and socio-economic status had no significant influence on size of difference and direction of recall, although reliability of recall was slightly worse among the over-75s versus under-60s for hips (Oxford Hip Score ICC 0.88 vs. 0.78). Mean retrospective PROMs for groups or populations of patients can reliably predict what mean contemporary reports of PROMs would have been. CONCLUSION: Retrospective PROMs can be used to obtain a baseline assessment of health status when contemporary collection is not feasible or cost effective. Research is needed to determine the feasibility of retrospective PROMs in emergency admissions.

Change in Health-related Quality of Life After Referral to Memory Assessment Services.

Despite strong support for the provision of memory assessment services (MASs) in England and other countries, their effectiveness in improving patient outcomes is uncertain. We aimed to describe change in patients' health-related quality of life (HRQL) 6 months after referral to MASs and to examine associations with patient characteristics and use of postdiagnostic interventions. Data from 883 patients referred to 69 MASs and their informal caregivers (n=569) were collected at referral and 6 months later. Multivariable linear regression was used to examine associations of change in HRQL (DEMQOL, DEMQOL-Proxy) with patient characteristics (age, sex, ethnicity, socioeconomic deprivation, and comorbidity) and use of postdiagnostic interventions (antidementia medications and nonpharmacological therapies). Mean HRQL improved, irrespective of diagnosis: self-reported HRQL increased 3.4 points (95% CI, 2.7-4.1) and proxy-reported HRQL 1.3 points (95% CI, 0.5-2.1). HRQL change was not associated with any of the patient characteristics studied. Patients with dementia (54%) receiving antidementia drugs reported greater improvement in their HRQL but those using nonpharmacological therapies reported less improvement compared with those note receiving therapy. HRQL improved in the first 6 months after referral to MASs. Research is needed to determine longer term sustainability of the benefits and the cost-effectiveness of MASs.

Sociodemographic Characteristics, Cognitive Function, and Health-related Quality of Life of Patients Referred to Memory Assessment Services in England.

National policy in England is to encourage referral of people with suspected dementia to Memory Assessment Services (MAS). However, little is known about the characteristics of new referrals, which limits our capacity to evaluate these services. The objectives were to: describe the characteristics (age, sex, ethnicity, socioeconomic deprivation, and comorbidity) of referred patients, and examine the relationships between these characteristics and cognitive function (tertiles of Mini-Mental State Examination score) and health-related quality of life (HRQL) (DEMQOL, DEMQOL-Proxy). We used multivariable regression methods to analyze data from 1420 patients from 73 MAS, and their lay carers (n=1020). The mean age of patients was 78 years; 42% had cognitive function equivalent to Mini-Mental State Examination <24. Characteristics associated with lower function were: older age, being female, deprivation, and nonwhite ethnicity. Deprivation and nonwhite ethnicity were also associated with lower self-reported HRQL, as was having multiple comorbidities; older age was associated with better self-reported HRQL. Lower proxy-reported HRQL was associated with being female, deprivation and comorbidities, but not age and ethnicity. A large proportion of study participants had moderate or high cognitive function scores, suggesting that these patients were referred early to MAS. Research is needed to identify why apparent sociodemographic inequalities in use of MAS exist.

DEMQOL and DEMQOL-Proxy: a Rasch analysis.

BACKGROUND: DEMQOL and DEMQOL-Proxy are widely used patient reported outcome measures (PROMs) of health related quality of life in people with dementia (PWD). Growing interest in routine use of PROMs in health care calls for more robust instruments that are potentially fit for reliable and valid comparisons at the micro-level (patients) and meso-level (clinics, hospitals, care homes). METHODS: We used modern psychometric methods (based on the Rasch model) to re-evaluate DEMQOL (1428 PWDs) and DEMQOL-Proxy (1022 carers) to ensure they are fit for purpose. We evaluated scale to sample targeting, ordering of item thresholds, item fit to the model, and differential item functioning (sex, age, relationship), local independence, unidimensionality and reliability on the full set of items and a smaller item set. RESULTS: For both DEMQOL and DEMQOL-Proxy the smaller item set performed better than the original item set. We developed revised scores using the items from the smaller set. CONCLUSIONS: We have improved the scoring of DEMQOL and DEMQOL-Proxy using the Rasch measurement model. Future work should focus on the problems identified with content and response options.