A Family Booklet About Comfort Care in Advanced Dementia:Three-Country Evaluation

Objectives: To evaluate a booklet on comfort care in dementia from the perspective of family with relevant experience, and assess nursing home resident and family factors associated with evaluations. Design: Retrospective study. Setting: Long term care facilities in French-speaking Canada, and the Netherlands and Italy.
Participants: Bereaved family (n = 138).
Measurements: An 8-item scale assessed the booklet's acceptability. Usefulness was rated on a 0 to 10 scale, and perceived usefulness referred to usefulness if family had had the booklet during the resident's stay. Families indicated preferred ways of obtaining, and the most appropriate time to get the booklet.
Results: Almost all families (94%) perceived the booklet as useful. Canadian and Dutch families evaluated the booklet's contents and format favorably, whereas Italian families' evaluations were less favorable. Almost all families endorsed roles for physicians or nurses and about half additionally accepted availability through own initiative, in print or through the Internet. Preference of timing was highly variable. Better acceptability, usefulness, and availability through own initiative were independently associated with non-Italian nationality, presence of more physical signs discussed in the booklet, feeling ill-prepared, and higher satisfaction with care. A preference of receiving the booklet early was more likely in Italian families, those without university education, and those involved with older residents.
Conclusion: The booklet is suitable to inform Dutch and Canadian families on comfort care in dementia, but implementation in Italy requires further consideration. The booklet may be integrated in advance care planning in long term care, and made available outside long term care settings to serve families who wish to be informed early. © 2012 American Medical Directors Association, Inc.
Keywords: Decision aid; decision making; advance care planning; palliative care; nursing homes; dementia.

Physicians' and Nurses' Perceived Usefulness and Acceptability of a Family Information Booklet about Comfort Care in Advanced Dementia

Background: Families of patients with advanced dementia need to be informed about the course of the dementia and comfort care. Conditional for health care providers educating families is their knowledge and comfort in family education. Methods: Perceived usefulness and acceptability of a Canadian family booklet explaining possible complications and comfort care in dementia was assessed by physicians and nurses caring for dementia patients in 14 nursing homes in Lombardy, Italy and 21 in the Netherlands. The practitioners received a questionnaire and translated versions adapted to local practice where needed. In 10 of 21 Dutch homes, physicians evaluated only the original Canadian version in English. A 15-item scale assessed the booklet's acceptability, for example, to inform families, or for educational purposes. Perceived usefulness referred to proportion of families of dementia patients for whom the booklet would be useful. A total of 168 evaluations were available for multivariable regression analyses. Results: The practitioners anticipated that the booklet would be useful for most families. Evaluation of the Dutch translation of the booklet was similar to the English version. Country (Netherlands) and profession (nurses) were independently associated with better acceptability. Usefulness was perceived as better by Italian respondents and nurses, but only in analyses unadjusted for the higher educational needs of these respondents. Conclusion: Overall, the concept of written information on comfort care was appreciated by practitioners of European countries differing in attitudes toward end-of-life care. A booklet may help practitioners, and in particular nurses, in providing comfort care for dementia patients and their families. © Copyright 2011, Mary Ann Liebert, Inc. 2011.

Cold comfort at the Magh Mela: Social identity processes and physical hardship

Humans inhabit environments that are both social and physical, and in this article weinvestigate if and how social identity processes shape the experience and negotiation ofphysically demanding environmental conditions. Specifically, we consider how severe coldcan be interpreted and experienced in relation to group members’ social identity. Ourdata comprise ethnographic observation and semi-structured interviews with pilgrimsattending a month-long winter Hindu religious festival that is characterized bynear-freezing conditions. The analysis explores (1) how pilgrims appraised the cold andhow these appraisals were shaped by their identity as pilgrims; (2) how shared identitywith other pilgrims led to forms of mutual support that made it easier to cope with thecold. Our findings therefore extend theorizing on social identity processes to highlighttheir relevance to physical as well as social conditions.

Comfort Care Rounds: A Staff Capacity-Building Initiative in Long-Term Care Homes

This article reports a pilot evaluation of Comfort Care Rounds (CCRs)-a strategy for addressing long-term care home staff's palliative and end-of-life care educational and support needs. Using a qualitative descriptive design, semistructured individual and focus group interviews were conducted to understand staff members' perspectives and feedback on the implementation and application of CCRs. Study participants identified that effective advertising, interest, and assigning staff to attend CCRs facilitated their participation. The key barriers to their attendance included difficulty in balancing heavy workloads and scheduling logistics. Interprofessional team member representation was sought but was not consistent. Study participants recognized the benefits of attending; however, they provided feedback on how the scheduling, content, and focus could be improved. Overall, study participants found CCRs to be beneficial to their palliative and end-of-life care knowledge, practice, and confidence. However, they identified barriers and recommendations, which warrant ongoing evaluation.

Calibrated CFD simulation to evaluate thermal comfort in a highly-glazed naturally ventilated room

Natural ventilation is a sustainable solution to maintaining healthy and comfortable environmental conditions in buildings. However, the effective design, construction and operation of naturally ventilated buildings require a good understanding of complex airflow patterns caused by the buoyancy and wind effects.The work presented in this article employed a 3D computational fluid dynamics (CFD) analysis in order to investigate environmental conditions and thermal comfort of the occupants of a highly-glazed naturally ventilated meeting room. This analysis was facilitated by the real-time field measurements performed in an operating building, and previously developed formal calibration methodology for reliable CFD models of indoor environments. Since, creating an accurate CFD model of an occupied space in a real-life scenario requires a high level of CFD expertise, trusted experimental data and an ability to interpret model input parameters; the calibration methodology guided towards a robust and reliable CFD model of the indoor environment. This calibrated CFD model was then used to investigate indoor environmental conditions and to evaluate thermal comfort indices for the occupants of the room. Thermal comfort expresses occupants' satisfaction with thermal environment in buildings by defining the range of indoor thermal environmental conditions acceptable to a majority of occupants. In this study, the thermal comfort analysis, supported by both field measurements and CFD simulation results, confirmed a satisfactory and optimal room operation in terms of thermal environment for the investigated real-life scenario. © 2013 Elsevier Ltd.

The use of erythropoiesis-stimulating agents with ruxolitinib in patients with myelofibrosis in COMFORT-II: an open-label, phase 3 study assessing efficacy and safety of ruxolitinib versus best available therapy in the treatment of myelofibrosis

BACKGROUND: Anemia is considered a negative prognostic risk factor for survival in patients with myelofibrosis. Most patients with myelofibrosis are anemic, and 35-54 % present with anemia at diagnosis. Ruxolitinib, a potent inhibitor of Janus kinase (JAK) 1 and JAK2, was associated with an overall survival benefit and improvements in splenomegaly and patient-reported outcomes in patients with myelofibrosis in the two phase 3 COMFORT studies. Consistent with the ruxolitinib mechanism of action, anemia was a frequently reported adverse event. In clinical practice, anemia is sometimes managed with erythropoiesis-stimulating agents (ESAs). This post hoc analysis evaluated the safety and efficacy of concomitant ruxolitinib and ESA administration in patients enrolled in COMFORT-II, an open-label, phase 3 study comparing the efficacy and safety of ruxolitinib with best available therapy for treatment of myelofibrosis. Patients were randomized (2:1) to receive ruxolitinib 15 or 20 mg twice daily or best available therapy. Spleen volume was assessed by magnetic resonance imaging or computed tomography scan.

RESULTS: Thirteen of 146 ruxolitinib-treated patients had concomitant ESA administration (+ESA). The median exposure to ruxolitinib was 114 weeks in the +ESA group and 111 weeks in the overall ruxolitinib arm; the median ruxolitinib dose intensity was 33 mg/day for each group. Six weeks before the first ESA administration, 10 of the 13 patients had grade 3/4 hemoglobin abnormalities. These had improved to grade 2 in 7 of the 13 patients by 6 weeks after the first ESA administration. The rate of packed red blood cell transfusions per month within 12 weeks before and after first ESA administration remained the same in 1 patient, decreased in 2 patients, and increased in 3 patients; 7 patients remained transfusion independent. Reductions in splenomegaly were observed in 69 % of evaluable patients (9/13) following first ESA administration.

CONCLUSIONS: Concomitant use of an ESA with ruxolitinib was well tolerated and did not affect the efficacy of ruxolitinib. Further investigations evaluating the effects of ESAs to alleviate anemia in ruxolitinib-treated patients are warranted (ClinicalTrials.gov identifier, NCT00934544; July 6, 2009).

An investigation of IAQ, thermal comfort and Sick Building Syndrome symptoms in UK energy efficient homes

Purpose
– Concern of the deterioration of indoor environmental quality as a result of energy efficient building design strategies is growing. Apprehensions of the effect of airtight, super insulated envelopes, the reduction of infiltration, and the reliance on mechanical systems to provide adequate ventilation (air supply) is promoting emerging new research in this field. The purpose of this paper is to present the results of an indoor air quality (IAQ) and thermal comfort investigation in UK energy efficient homes, through a case study investigation.

Design/methodology/approach
– The case study dwellings consisted of a row of six new-build homes which utilize mechanical ventilation with heat recovery (MVHR) systems, are built to an average airtightness of 2m3/m2/hr at 50 Pascal’s, and constructed without a central heating system. Physical IAQ measurements and occupant interviews were conducted during the summer and winter months over a 24-hour period, to gain information on occupant activities, perception of the interior environment, building-related health and building use.

Findings
– The results suggest inadequate IAQ and perceived thermal comfort, insufficient use of purge ventilation, presence of fungal growth, significant variances in heating patterns, occurrence of sick building syndrome symptoms and issues with the MVHR system.

Practical implications
– The findings will provide relevant data on the applicability of airtight, mechanically ventilated homes in a UK climate, with particular reference to IAQ.

Originality/value
– IAQ data of this nature is essentially lacking, particularly in the UK context. The findings will aid the development of effective sustainable design strategies that are appropriate to localized climatic conditions and sensitive to the health of building occupants.

Thermal environments and comfort in dementia friendly dwellings

This study follows on from a research project that developed guidelines for the Universal Design (UD) of Dementia Friendly Dwellings for People with Dementia, their Families and Carers. Research findings point to the need for thermal environments that support people with dementia and do not provoke stress, agitation or anxiety. Using semi-structured interviews and qualitative analysis of people with dementia this paper aims to provide insight into the questions of appropriate thermal environments. The qualitative analysis is supported by example simulated indoor environment studies that investigate comfort in common thermal environment provision scenarios in the homes of people with dementia. This paper focuses on the thermal environment, its impact on people with dementia, its therapeutic value, and its role in encouraging engagement in every day activity.
Findings from the interviews emphasize that control over their own internal environment is a priority for people with dementia. A strong preference for naturally or passively conditioned environments over mechanical conditioning is evident. Preferences are expressed for naturally ventilated environments enabling occupant instigated air movement. Repeated emphasis is placed on familiar elements including the fire and hot water bottle. Little desire is expressed for information feedback or technological displays.

Intelligent predictive control for thermal comfort and energy savings in public buildings

This talk addresses the problem of controlling a heating ventilating and air conditioning system with the purpose of achieving a desired thermal comfort level and energy savings. The formulation uses the thermal comfort, assessed using the predicted mean vote (PMV) index, as a restriction and minimises the energy spent to comply with it. This results in the maintenance of thermal comfort and on the minimisation of energy, which in most operating conditions are conflicting goals requiring some sort of optimisation method to find appropriate solutions over time. In this work a discrete model based predictive control methodology is applied to the problem. It consists of three major components: the predictive models, implemented by radial basis function neural networks identifed by means of a multi-objective genetic algorithm [1]; the cost function that will be optimised to minimise energy consumption and provide adequate thermal comfort; and finally the optimisation method, in this case a discrete branch and bound approach. Each component will be described, with a special emphasis on a fast and accurate computation of the PMV indices [2]. Experimental results obtained within different rooms in a building of the University of Algarve will be presented, both in summer [3] and winter [4] conditions, demonstrating the feasibility and performance of the approach. Energy savings resulting from the application of the method are estimated to be greater than 50%.