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.

Reliability and validity of a self-administration version of DEMQOL-Proxy.

OBJECTIVE: This study aimed to investigate the reliability and validity of a self-administered version of DEMQOL-Proxy, a disease-specific instrument that measures health-related quality of life in people with dementia. METHODS: The sample consisted of 173 informal carers of people with dementia, aged 29 to 89 years old. Carers were mostly female, White/White British and closely related to the patient. They completed DEMQOL-Proxy (self-administered), EQ-5D-3L (proxy reported about the person with dementia), EQ-5D-3L (self-reported about their own health) and the Zarit Burden Interview. Using well-established methods from classical test theory, we evaluated scale level acceptability, reliability and convergent, discriminant and known-groups validity of DEMQOL-Proxy. RESULTS: DEMQOL-Proxy (self-administered) showed high acceptability (3.5% missing data and 0% scores at floor or ceiling), high internal consistency reliability (α = 0.93) and good convergent and discriminant validity. Amongst others, we found a moderately high correlation with EQ-5D-3L proxy reported (r = 0.52) and low to essentially zero correlations with EQ-5D-3L self-reported (r = 0.20) and carer and patient background variables (r ≤ 0.20). As predicted, DEMQOL-Proxy (self-administered) showed a modest correlation with DEMQOL (r = 0.32). Known-groups differences on health-related quality of life (comparing people with versus people without cognitive impairment) were of moderate effect size (d = 0.38) and in the expected direction. CONCLUSIONS: DEMQOL-Proxy (self-administered) has comparable acceptability, reliability and validity with DEMQOL-Proxy (interviewer administered). DEMQOL-Proxy (self-administered) can be used in a wider variety of contexts than its interviewer-administered version, including routine use in busy clinics. Copyright © 2016 John Wiley & Sons, Ltd.

An organisational analysis of the implementation of telecare and telehealth: the whole systems demonstrator.

BACKGROUND: To investigate organisational factors influencing the implementation challenges of redesigning services for people with long term conditions in three locations in England, using remote care (telehealth and telecare). METHODS: Case-studies of three sites forming the UK Department of Health's Whole Systems Demonstrator (WSD) Programme. Qualitative research techniques were used to obtain data from various sources, including semi-structured interviews, observation of meetings over the course programme and prior to its launch, and document review. Participants were managers and practitioners involved in the implementation of remote care services. RESULTS: The implementation of remote care was nested within a large pragmatic cluster randomised controlled trial (RCT), which formed a core element of the WSD programme. To produce robust benefits evidence, many aspect of the trial design could not be easily adapted to local circumstances. While remote care was successfully rolled-out, wider implementation lessons and levels of organisational learning across the sites were hindered by the requirements of the RCT. CONCLUSIONS: The implementation of a complex innovation such as remote care requires it to organically evolve, be responsive and adaptable to the local health and social care system, driven by support from front-line staff and management. This need for evolution was not always aligned with the imperative to gather robust benefits evidence. This tension needs to be resolved if government ambitions for the evidence-based scaling-up of remote care are to be realised.

Stimulating whole system redesign: Lessons from an organizational analysis of the Whole System Demonstrator programme.

OBJECTIVES: Whole system integration of health and social care has been positioned as key to improving care, increasing efficiency and controlling costs. However, evidence for the benefits of whole system integration is scarce. Drawing on organizational theory, this study uses the implementation of remote care services, viewed as an enabler for whole system working, to explore the reality of achieving this policy objective. METHODS: Qualitative, longitudinal data were collected across nine UK sites adopting remote care over three years. Three sites formed the Department of Health's Whole Systems Demonstrator (WSD) programme for remote care. In addition, the implementation of remote care was explored in six other sites unconstrained by the randomized control trial procedures of the WSD programme. The methods were ethnographic (including 235 hours of observations and 184 interviews). Participants were health and social care staff and Government policy makers. RESULTS: Remote care did not lead to system redesign; however, local 'ownership' of new services did lead to more collaborative practices across the care system. Lack of integration was an enduring and endemic challenge across all sites, relating to differences in statutory responsibilities, absence of shared budgets and hybrid organizational roles, differences in work practices and organizational philosophies, and ambiguity around what 'whole system working' actually entailed. CONCLUSIONS: Policy initiatives like the WSD programme provide opportunities to phase in collaborative practices and create an awareness of the need for joint working. However, the progress observed suggests that the concept of whole system redesign around remote care is currently unrealistic.