Quality of Life Assessments in Individuals With Young-Onset Dementia and Their Caregivers.

BACKGROUND: Quality of life (QoL) has seldom been investigated or explicitly measured in young-onset dementia (YoD). The aims of this study were (1) to investigate and compare QoL self- and proxy reports in a sample of YoD patients and caregivers using different conceptual assessments of QoL and (2) to examine the relationship between caregiver QoL and both burden and mental health. METHODS: There were 52 participants (26 YoD patient-caregiver dyads). The design was cross-sectional and part of a larger longitudinal prospective cohort study of YoD patients and caregivers. Primary measures included generic QoL (World Health Organization Quality of Life-short version [WHOQOL-BREF]), dementia-specific QoL (Quality of Life in Alzheimer's Disease Scale [QoL-AD]), health-related QoL (EQ5D), and a single-item QoL measure. Secondary measures included caregiver burden (Zarit Burden Index), mental health (Hospital Anxiety and Depression Scale), and dementia severity (Clinical Dementia Rating). RESULTS: Patient QoL self-reports were higher than caregiver proxy reports on the QoL-AD (P = .001). Patient QoL self-reports for the WHOQOL-BREF (P < .01) and single-item QoL (P < .05) measure were significantly higher than caregiver self-reports. Dementia severity had no relationship with QoL self-reports. Caregiver burden, anxiety, and depression were negatively correlated with QoL when measured using a generic and single-item measure, but not with the health-related measure. DISCUSSION: Patients and caregivers show a disparity in QoL reports, with patients tending to report higher QoL. Caregiver burden, anxiety, and depression should be areas targeted for interventions when supporting caregivers.

Findings from a pilot randomised trial of a social network self-management intervention in COPD.

BACKGROUND: Self-Management Support (SMS), refers to the actions taken by individuals to recognise and manage their own health. It is increasingly recognised that individuals with chronic obstructive pulmonary disease (COPD) require additional support with their Self-management. Emerging evidence suggests that the use of a social network intervention can improve health outcomes and increase quality of life. In order to understand the potential benefits of SMS in COPD, the GENIE (Generating Engagement in Network Support) SMS tool was implemented and evaluated in a COPD primary care context. The GENIE intervention is a social networking tool that consists of 3 parts; a concentric circle modelling to map existing social networks; a questions sections to elicit preferences for activities; a map of selected resources is then produced, aligned with the user's interests and suggestions for connections to existing network members and to new resources. METHODS: A pilot, parallel, single blind, block randomised controlled trial. Patients with COPD ranging from mild-very severe were recruited. Participants provided written consent and were then randomised to either the intervention or usual care. The primary aim was to understand the clinical benefit through the analysis of health status, symptom burden and quality of life. The secondary outcome measure was health utilisation. NHS cost differences were reported between groups using the GENIE intervention over usual care. RESULTS: The GENIE pilot results demonstrate maintenance in health status and clinical symptoms with a decrease in anxiety. An overall increase in quality of life was observed, these findings did not reach significance. A cost reduction was demonstrated in inpatient stay with no difference in primary care costs. Overall a cost reduction in NHS service utilisation was indicated in the intervention group. CONCLUSION: This pilot study indicated that using a social network intervention can encourage the development of new social connections and extend existing support networks for COPD patients. Increasing network support in this population is of benefit to both patients and NHS providers in terms of cost reductions and enhancing wellbeing. This broadens the understanding of possible new approaches to SMS in community COPD patients, which could now be investigated in a larger population over a longer period. TRIAL REGISTRATION: Clinical Trials.gov PRS National Library of Medicine. Protocol ID number: 19175, Clinical Trial ID: NCT02935452.

'The ICECAP-SCM tells you more about what I'm going through': A think-aloud study measuring quality of life among patients receiving supportive and palliative care.

BACKGROUND: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions. AIM: To determine the feasibility of completing ICECAP-Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals. DESIGN: Participants were asked to 'think aloud' while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison. SETTING/PARTICIPANTS: Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17). RESULTS: Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states. CONCLUSIONS: The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.

A team approach to recruitment in hospice research: engaging patients, close people and health professionals.

Research is vital to the future development of hospice care. However, research in hospice settings is very challenging. This paper describes a case study of a successful multidisciplinary research team approach (MDRT) to the recruitment of participants (hospice patients, family members and health professionals) for a study in a hospice setting on the economic evaluation of end-of-life care. A successful recruitment plan includes three key strategies: identifying key members of the MDRT early in the research process; having a clear and constant communication stream; and creating an environment where all team members have a shared commitment to the research, all voices are heard and valued, and everyone contributes to the research aims. An MDRT approach will be helpful to guide the development of successful recruitment plans for academic-community research partnerships in the hospice setting.

QT dispersion in mild cognitive impairment: a possible tool for predicting the risk of progression to dementia?

OBJECTIVE: The aim of this research was to investigate relationships between cognitive function and non-invasive, repeatable cardiac parameters in elderly subjects suffering from mild cognitive impairment (MCI) or Alzheimer's disease (AD). METHODS: Two hundred and twenty-four community-living elderly subjects, 31 AD patients, 77 MCI patients, and 116 cognitively normal subjects (CNS), were evaluated for cognitive abilities (Mini Mental State Examination score (MMSE)) and for electrocardiographic [corrected heart rate QT interval dispersion (QTcD)] and echocardiographic [Left ventricular ejection fraction (LVEF)] parameters. RESULTS: Mean values of LVEF were not significantly different between the three groups; QTcD mean values were significantly lower in CNS group than in subjects with MCI and AD. The Pearson Product Moment Correlation test, carried out in the three study groups, showed a significant inverse correlation between QTcD and MMSE score (r = -0.357; p < 0.01) in the group of MCI patients, only. In multivariable-adjusted linear regression tests, QTcD (p = 0.030) and education (p = 0.021) are associated with MMSE score in MCI group. Only the parameter of education appears to predict MMSE in CNS group; none of these parameters appear to predict MMSE in the group of patients with AD. CONCLUSION: The association between QTcD and MMSE requires cautious interpretation and further extensive investigation. However, if confirmed by longitudinal studies, the finding could play a role in the management of the subjects with MCI.

Economic evaluations and diagnostic testing: an illustrative case study approach.

OBJECTIVE: The aim of this study was to present a clear process of synthesizing test accuracy data when conducting economic evaluations of diagnostic tests for health technology assessment (HTA) assessors and health economists. METHODS: We appraised the methods advocated for using diagnostic test accuracy data in economic evaluations. We used a case study of fetal anemia in which data from a screening test are used in combination with a confirmatory test. RESULTS: We developed a step-by-step guide and consider two scenarios: when data on test accuracy from several studies are based on (i) the same test threshold for positivity and (ii) different test thresholds. CONCLUSIONS: We conclude that each approach has its strengths and limitations. We show that the optimal operating point of the test should be identified to determine the true cost-effectiveness of the test. We advocate that these issues require a multidisciplinary team of health economists, decision modelers and statisticians.

Specialist respiratory outreach: a case-finding initiative for identifying undiagnosed COPD in primary care.

COPD remains largely undiagnosed or is diagnosed late in the course of disease. We report findings of a specialist outreach programme to identify undiagnosed COPD in primary care. An electronic case-finding algorithm identified 1602 at-risk patients from 12 practices who were invited to attend the clinic. Three hundred and eighty-three (23.9%) responded and 288 were enrolled into the study. Forty-eight (16.6%) had undiagnosed mild and 28 (9.7%) had moderate airway obstruction, meeting spirometric diagnostic criteria for COPD. However, at 12 months only 8 suspected COPD patients (10.6%) had received a diagnostic label in their primary care record. This constituted 0.38% of the total patient population, as compared with 0.31% of control practices, p = 0.306. However, if all patients with airway obstruction received a coding of COPD, then the diagnosis rate in the intervention group would have risen by 0.84%. Despite the low take-up and diagnostic yield, this programme suggests that integrated case-finding strategies could improve COPD recognition.

Adaptation, Acceptance and Adaptive Preferences in Health and Capability Well-Being Measurement Amongst Those Approaching End of Life.

BACKGROUND AND OBJECTIVES: Adaptive preferences occur when people subconsciously alter their views to account for the possibilities available to them. Adaptive preferences may be problematic where these views are used in resource allocation decisions because they may lead to underestimation of the true benefits of providing services. This research explored the nature and extent of both adaptation (changing to better suit the context) and adaptive preferences (altering preferences in response to restricted options) in individuals approaching the end of life (EoL). METHODS: Qualitative data from 'thinkaloud' interviews with 33 hospice patients, 22 close persons and 17 health professionals were used alongside their responses to three health/well-being measures for use in resource allocation decisions: EQ-5D-5L (health status); ICECAP-A (adult capability); and ICECAP-SCM (Supportive Care Measure; EoL capability). Constant comparative analysis combined a focus on both verbalised perceptions across the three groups and responses to the measures. RESULTS: Data collection took place between October 2012 and February 2014. Informants spoke clearly about how patients had adapted their lives in response to symptoms associated with their terminal condition. It was often seen as a positive choice to accept their state and adapt in this way but, at the same time, most patients were fully aware of the health and capability losses that they had faced. Self-assessments of health and capability generally appeared to reflect the pre-adaptation state, although there were exceptions. CONCLUSION: Despite adapting to their conditions, the reference group for individuals approaching EoL largely remained a healthy, capable population, and most did not show evidence of adaptive preferences.

Can trained volunteers improve the mealtime care of older hospital patients? An implementation study in one English hospital.

OBJECTIVE: Multinational studies report undernutrition among 39% older inpatients; importantly, malnutrition risk may further increase while in hospital. Contributory factors include insufficient mealtime assistance from time-pressured hospital staff. A pilot study showed trained volunteers could safely improve mealtime care. This study evaluates the wider implementation of a mealtime assistance programme. DESIGN: Mixed methods prospective quasi-experimental study. SETTING: Nine wards across Medicine for Older People (MOP), Acute Medical Unit, Orthopaedics and Adult Medicine departments in one English hospital. PARTICIPANTS: Patients, volunteers, ward staff. INTERVENTION: Volunteers trained to help patients aged ≥70 years at weekday lunchtime and evening meals. MAIN OUTCOME MEASURES: The number of volunteers recruited, trained and their activity was recorded. Barriers and enablers to the intervention were explored through interviews and focus groups with patients, ward staff and volunteers. The total cost of the programme was evaluated. RESULTS: 65 volunteers (52 female) helped at 846 meals (median eight/volunteer, range 2-109). The mix of ages (17-77 years) and employment status enabled lunch and evening mealtimes to be covered. Feeding patients was the most common activity volunteers performed, comprising 56% of volunteer interactions on MOP and 34%-35% in other departments. Patients and nurses universally valued the volunteers, who were skilled at encouraging reluctant eaters. Training was seen as essential by volunteers, patients and staff. The volunteers released potential costs of clinical time equivalent to a saving of £27.04/patient/day of healthcare assistant time or £45.04 of newly qualified nurse time above their training costs during the study. CONCLUSIONS: Patients in all departments had a high level of need for mealtime assistance. Trained volunteers were highly valued by patients and staff. The programme was cost-saving releasing valuable nursing time. TRIAL REGISTRATION NUMBER: NCT02229019; Pre-results.

Social Network Type and Long-Term Condition Management Support: A Cross-Sectional Study in Six European Countries.

BACKGROUND: Network types and characteristics have been linked to the capacity of inter-personal environments to mobilise and share resources. The aim of this paper is to examine personal network types in relation to long-term condition management in order to identify the properties of network types most likely to provide support for those with a long-term condition. METHOD: A cross-sectional observational survey of people with type 2 diabetes using interviews and questionnaires was conducted between April and October 2013 in six European countries: Greece, Spain, Bulgaria, Norway, United Kingdom, and Netherlands. 1862 people with predominantly lower socio-economic status were recruited from each country. We used k-means clustering analysis to derive the network types, and one-way analysis of variance and multivariate logistic regression analysis to explore the relationship between network type socio-economic characteristics, self-management monitoring and skills, well-being, and network member work. RESULTS: Five network types of people with long-term conditions were identified: restricted, minimal family, family, weak ties, and diverse. Restricted network types represented those with the poorest self-management skills and were associated with limited support from social network members. Restricted networks were associated with poor indicators across self-management capacity, network support, and well-being. Diverse networks were associated with more enhanced self-management skills amongst those with a long-term condition and high level of emotional support. It was the three network types which had a large number of network members (diverse, weak ties, and family) where healthcare utilisation was most likely to correspond to existing health needs. DISCUSSION: Our findings suggest that type of increased social involvement is linked to greater self-management capacity and potentially lower formal health care costs indicating that diverse networks constitute the optimal network type as a policy in terms of the design of LTCM interventions and building support for people with LTCs.

Circulating endothelial progenitor cells in type 1 diabetic patients with erectile dysfunction.

Circulating endothelial progenitor cells (EPCs) are bone marrow-derived stem cells able to migrate to sites of damaged endothelium and differentiate into endothelial cells, thereby contributing to vascular repair. Recent studies demonstrated a reduction of EPCs in patients with diabetes mellitus or erectile dysfunction (ED). The aim of this study was to evaluate the circulating levels of different EPCs phenotypes and their relation with testosterone levels in young type 1 diabetic patients with ED. We studied 118 consecutively type 1 diabetic patients and 60 age-matched healthy controls. Erectile function was assessed by completing the International Index of Erectile Function (IIEF-5) and EPCs levels by flow cytometry. Testosterone concentrations were evaluated in all the study population. We identified 38 diabetic patients with ED (Group 1) and 80 patients without ED (Group 2). CD34+KDR+CD133+ cells were significantly lower in patients in Group 1 as compared with those in Group 2 [median and interquartile range, n/10(6) events, 12 (6-16) vs. 18 (13-22), P < 0.001)]. In all participants in the study, there was a significant correlation between circulating CD34+KDR+CD133+ cells and testosterone levels (r = 0.410, P < 0.001), which was highest in Group 1, intermediate in Group 2, and lowest in Group 3 (controls). There was a significant correlation between IIEF-5 score and both CD34+KDR+ (r = 0.459, P = 0.003) and CD34+KDR+CD133+ (r = 0.316, P = 0.050) cells among patients of Group 1, as well as between testosterone levels and most of the EPCs phenotypes. Finally, multivariate regression analysis identified levels of circulating CD34+KDR+ cells as an independent risk factor for ED (ß-coefficient 0.348, P = 0.007). In conclusion, type 1 diabetic patients with ED show reduced levels of CD34+KDR+CD133+ cells, whose number correlates with IIEF. Further studies are needed to fully understand the exact mechanisms by which testosterone regulates vascular homeostasis.