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Background: This paper describes barriers to engagement in the context of group activities attended by nursing home residents with dementia. Objective: The goal is to clarify the presence and types of barriers to group activities for persons with dementia. Methods: Therapeutic recreation staff (TRs) who conducted the group activities, and trained research observers (ROs) independently identified barriers occurring during group activity sessions through ratings and open-ended comments, which were analyzed via a mixed-method approach. Results: Barriers were related to specific participant, environmental, and group session characteristics. Most frequently noted barriers were participant-related, pertaining to apathy and challenging behavior. Noise was the most frequent environmental barrier. Overall, ROs reported more barriers than TRs, yet TRs reported the barrier of inappropriate topic more frequently than ROs. Conclusions: The study suggests that the number and specific types of barriers are associated with negative engagement outcomes. Insight into these barriers is the first step toward addressing them and minimizing their effects.

Deficiency of adenosine deaminase type 2 (DADA2) is an autosomal recessive disease caused by bi-allelic loss-of-function mutations in

Background Myhre syndrome is a genetic disorder caused by gain of function mutations in the SMAD Family Member 4 (SMAD4) gene, resulting in progressive, proliferative skin and organ fibrosis. Skin thickening and joint contractures are often the main presenting features of the disease and may be mistaken for juvenile scleroderma. Case presentation We report a case of a 13 year-old female presenting with widespread skin thickening and joint contractures from infancy. She was diagnosed with diffuse cutaneous systemic sclerosis, and treatment with corticosteroids and subcutaneous methotrexate recommended. There was however disease progression prompting genetic testing. This identified a rare heterozygous pathogenic variant c.1499 T > C (p.Ile500Thr) in the SMAD4 gene, suggesting a diagnosis of Myhre syndrome. Securing a molecular diagnosis in this case allowed the cessation of immunosuppression, thus reducing the burden of unnecessary and potentially harmful treatment, and allowing genetic counselling. Conclusion Myhre Syndrome is a rare genetic mimic of scleroderma that should be considered alongside several other monogenic diseases presenting with pathological fibrosis from early in life. We highlight this case to provide an overview of these genetic mimics of scleroderma, and highlight the molecular pathways that can lead to pathological fibrosis. This may provide clues to the pathogenesis of sporadic juvenile scleroderma, and could suggest novel therapeutic targets.

ObjectiveTo report a series of patients with cerebral arteriopathy associated with heterozygous variants in the casitas B-lineage lymphoma (CBL) gene and examine the functional role of the identified mutant Cbl protein. We hypothesized that mutated Cbl fails to act as a negative regulator of the RAS-mitogen-activated protein kinases (MAPK) signaling pathway, resulting in enhanced vascular fibroblast proliferation and migration and enhanced angiogenesis and collateral vessel formation.MethodsWe performed whole-exome sequencing in 11 separate families referred to Great Ormond Street Hospital, London, with suspected genetic cause for clinical presentation with severe progressive cerebral arteriopathy.ResultsWe identified heterozygous variants in the CBL gene in 5 affected cases from 3 families. We show that impaired CBL-mediated degradation of cell surface tyrosine kinase receptors and dysregulated intracellular signaling through the RAS-MAPK pathway contribute to the pathogenesis of the observed arteriopathy. Mutated CBL failed to control the angiogenic signal relay of vascular endothelial growth factor receptor 2, leading to prolonged tyrosine kinase signaling, thus driving angiogenesis and collateral vessel formation. Mutant Cbl promoted myofibroblast migration and proliferation contributing to vascular occlusive disease; these effects were abrogated following treatment with a RAF-RAS-MAPK pathway inhibitor.ConclusionsWe provide a possible mechanism for the arteriopathy associated with heterozygous CBL variants. Identification of the key role for the RAS-MAPK pathway in CBL-mediated cerebral arteriopathy could facilitate identification of novel or repurposed druggable targets for treating these patients and may also provide therapeutic clues for other cerebral arteriopathies.

PurposeThe purpose of this paper is to develop a framework that describes and explains how corporate social responsibility (CSR) initiatives are perceived by customers and links customer perception to the notion of customer value perception. To explore customer value conception firstly, the perception of CSR initiatives is investigated; secondly, indications for the value-enhancing effects of CSR initiatives are studied, and finally, the varying effects which different value categories can have on customer attitudes and behaviour are extracted.Design/methodology/approachThe data consists of 12 semi-structured interviews with customers of European telecommunication companies.FindingsThe results suggest that CSR initiatives, when communicated efficiently and considered as relevant by customers, will enhance two customer value categories: the extrinsic self-oriented value defined as efficiency and excellence and the intrinsic other-oriented value pertaining to ethics or spirituality. Enhancement of extrinsic self-oriented value imbeds the potential of CSR initiatives to affect customers’ purchase behaviour and thus strengthen ethical consumerism within the telecommunications industry.Research limitations/implicationsThe main implication for research is a better understanding of the relationship between customer perception and customer value perception in the field of ethical consumerism. Focussing on one industry for the study can be named as a limitation.Practical implicationsAs indicated by the research, results by customers prioritised CSR initiative can affect the customer value perception, mainly the extrinsic/self-oriented value. If the company is aiming to change customer behaviour and to strengthen ethical consumerism, it is important that the customer experience of CSR initiatives improve excellence (quality) and/or efficiency of the product/service.Originality/valueThis paper fulfils an identified need of research on how CSR initiatives can influence consumer behaviour.

ObjectivesTo describe social engagement care (SEC) provided by live-in migrant caregivers for frail older adults compared with care recipients’ and families’ wishes for such care.MethodInterviews with care recipients, family members, and migrant caregivers assessed preferences for and provision of five types of SEC activities: knowing the older person as a person, knowing their main concerns, having personal conversations, going for walks, and sharing social or leisure activities.ResultsCare recipients and family proxies reported a moderate desire for SEC from migrant caregivers, except for sharing leisure activities, for which there was only a slight preference. Migrant caregivers reported these practices at somewhat higher levels compared with the other respondents. Migrant caregivers’ reports of practice show little relationship with care-recipients’ preferences, but care recipients tended to perceive practice as agreeing with their own wishes.DiscussionIt is important to include SEC as part of the role of live-in migrant caregivers of older persons. However, there is a need to differentiate among types of SEC and subsequently optimize the match between the care-recipient’s wishes and needs and the actual care provided.

Living and working conditions of 111 migrant live-in homecare workers caring for older care recipients in Israel were assessed using structured face-to-face interviews. Questions pertained to the categories of living conditions, food-related arrangements, and work conditions and benefits; the most important, most satisfactory, and least satisfactory items in these categories; as well as ratings of satisfaction in these areas. Problematic areas included resting days, hours worked per day, and ability to leave during the day. Mean satisfaction ratings were high (between a large to a very large extent) and were similar with respect to living conditions, food-related arrangements, and work conditions and benefits. Reported satisfaction with salary was significantly lower (between a moderate to a large extent). Items associated with reported satisfaction levels revealed the importance of comfort and control. The data indicate that discrepancies remain between recommended and actual working conditions for migrant live-in homecare workers in Israel.

This study examined the prevalence, types, and perceived impact of intergenerational programs in schools. Programs involving senior volunteers assisting children, or children participating in activities with older people were considered. Of the schools reached, 47% reported intergenerational programming. Thirty-three schools in the Tel-Aviv region participated in the study. Data were collected from 85 seniors, 26 teachers, and 20 coordinators. Assessments included program characteristics, program preparation, and perceived benefits and difficulties. Both programs were reported to have beneficial effects for seniors and to benefit children in the academic, social, and emotional domains. However, programs appeared to attract different types of volunteers and different degrees of volunteer commitment. Findings suggest that there is a need to pay additional attention to both participants’ specific requests and needs and to the allocation of resources to improve the design and implementation of intergenerational programs.

153 Background: We developed a patient-facing video aimed at raising early breast cancer survivors’ adherence to ASCO’s Choosing Wisely recommendation against surveillance tumor marker testing. To understand the impact of the video on cancer worry regarding recurrence, we surveyed breast cancer survivors before and after viewing the video. Methods: Women with stage I-IIIA breast cancer (N=246) treated at six regional community clinics were surveyed prior to viewing a video at the start of surveillance, then again at follow-up one year later (N=171). Both surveys included the Cancer Worry Scale (CWS-8 items, 4-point Likert scale). Tumor marker (TM) testing during surveillance was collected for 728 patients and linked to surveys among those who provided consent (N=105). Results: Most women (77%) were white age 50+. Among women who completed both questionnaires (N=153), the average CWS summary score was 17.1 at baseline (range=9-29) and 16.9 at follow-up ( p=0.48, range=8-30). Women who did not view the video (A) and those with high baseline cancer worry (B) who viewed the video had similar rates of TM testing (19%) compared to patients with low baseline cancer worry (C) who viewed the video (3%). Cancer worry is highly correlated with the decision to use of TM testing. Viewing an informational video that provided evidence-based advice on follow-up and testing did not impact cancer worry. Enrollment among eligible patients was impacted by challenges to proactively identify and consent patients during their transition to surveillance. Conclusions: Patients with high baseline cancer worry may need different or additional guidance beyond an educational video during their transition to surveillance for breast cancer. [Table: see text]

19 Background: An ASCO 2012 Choosing Wisely recommendation cautions against the use of primary prophylactic colony stimulating factors (PP-CSF) for chemotherapy regimens with 20% or ≤20% FN risk regimens, respectively. Clinic tumor registries were queried for patients with stage II-IV breast, non-small cell lung, or colorectal cancer starting first-line chemotherapy pre- or post-intervention. PP-CSF use, FN risk factors, and chemotherapy regimens matching the study protocol were manually abstracted. A regimen order was coded as adherent if it is low (20%) FN risk with PP-CSF use. Results: The intervention was successfully implemented at 4 out of 6 participating clinics. The remaining 2 clinics were transitioning from paper to electronic orders in 1-2 years or using a system managed by a non-participating hospital. Adherence across the four implementing clinics increased after the intervention. *=p

18 Background: ASCO 2012 Choosing Wisely recommends against serum tumor marker tests and advanced imaging for breast cancer survivors who are asymptomatic for recurrence. Our pilot aimed to measure and raise adherence to this recommendation through a patient video at regional community clinics. Methods: Eligibility for study included patients with 1+ long-term follow-up visit within 3 months of end of treatment in the pre- or post-intervention period: Clinic tumor registries were queried for stage I-IIIA breast cancer patients treated with curative intent. The intervention included 1) academic detailing for oncologists at a regular meeting and 2) a video about the recommendation shown to patients at end of active treatment. Surveillance data was manually abstracted. We define adherence as no asymptomatic tests in the first 13 months of surveillance. Results: Advanced imaging adherence was high before and after the intervention (99-100%). Tumor marker (TM) adherence is in the table. Six of seven providers with low (90%). TM adherence was better among patients who viewed the video (130 of 145, 90%) than those who did not (452 of 556, 81%) in the post-intervention period. The higher TM adherence among patients who viewed the video and the wide range in adherence among providers suggest that tumor marker use may be both patient- and provider-driven. Population characteristics may explain some of the variation in adherence. Conclusions: While adherence to recommendations regarding high-cost imaging was high, wide variation in tumor marker adherence among providers and high baseline adherence for advanced imaging suggests that interventions targeting surveillance testing may wish to focus primarily on tumor markers and provider outreach. [Table: see text]

Objectives: Participation in group activities can benefit persons with dementia, alleviating boredom, improving affect, maintaining function, and decreasing problematic behaviors. Methods: We describe patterns of attendance of residents with dementia at nursing home activity groups and investigate stimulus and environmental factors that may affect attendance. Results: Residents participated in 60.8% of the activities, with reasons for nonattendance including refusal (9.7%), not being on the unit (7.8%), being asleep (6.8%), and being involved in activities of daily living and other activities (8.3%). On average, 3.5 other residents not recruited for the study chose to participate in each group session. Group attendance was significantly related to group topic. Implication: The need for activities was evident by the attendance of both invited and other residents. Understanding the factors that affect attendance is the first step toward developing procedures to maximize participation in activities in order to decrease loneliness and boredom in this population.

The Sources of Discomfort Scale (SODS) assesses discomfort manifestations based on source of discomfort, thus making it both distinct from and complementary to pain assessments for persons with dementia. Sources were categorized as pertaining to physical discomfort, to body position, and to environmental sources. Body position sources of discomfort were related to poor functional status and to pain. The SODS scores were not related to cognitive functioning, and sources of discomfort other than those pertaining to body position were not correlated with pain. This paper demonstrates a direct and enhanced method to detect the manifestations of discomfort separately from pain indicators in a population with advanced dementia. The determination of the source of discomfort has direct implications for intervention.

This chapter sets out to assess how the customer perception of CSR initiatives can influence customer value perception and therewith has the potential to affect ethical consumerism through the mediation variable of prioritisation of CSR initiatives.

Background: Affect, behavior, and cognition can be considered as basic constructs that dictate human functioning, with intricate and bi-directional relationships among them. Prior to the present study, relationships among these constructs have not been systematically examined within the context of dementia.Methods: Sample 1 contained 185 nursing home residents with a diagnosis of dementia. Sample 2 contained 117 residents with dementia, all of whom manifested agitated behaviors. Outcome measures included stimulus engagement (assessed via the Observational Measure of Engagement), affect (measured using Lawton's Modified Behavior Stream), and agitation/problem behavior (recorded via the Agitated Behaviors Mapping Instrument). Real time direct observations were collected during both stimulus presentation and control conditions.Results: The relationship of engagement with positive affect, represented by the variables of interest and pleasure, were high and positive. No relationship emerged for engagement with negative affect or agitated behavior. A consistent positive relationship was found between agitated behavior and negative affect, and in Sample 2, a negative relationship between agitated behavior and both pleasure and interest.Conclusion: This is the first study to examine relationships among variables that are typically examined individually and, in doing so, has clarified the nomenclature used to describe the constructs of affect, engagement, and agitated behaviors in persons with dementia. The finding that the constructs of engagement, agitated behavior, and affect are multidimensional and that relationships among these constructs occur for some of the dimensions is important for the development of interventions and for clear communication in practice and research.

Objective To compare physicians (MDs), psychologists (PhDs), and nurse practitioners (NPs) regarding their approach to dementia-associated behavior problems in nursing home residents. Methods A web-based questionnaire solicited information about symptoms, assessment methods, suspected etiologies, and interventions with respect to the last resident treated for dementia-associated behavior problems. Results Responses were obtained from 108 MDs, 38 PhDs, and 100 NPs. All groups relied similarly on information from the nursing staff, speaking with nursing assistants, and care team meetings in assessment; NPs were more likely to consult with family members. A standard assessment instrument was used most frequently by PhDs (50%), but this generally assessed cognitive status rather than problem behaviors. PhDs most frequently noted depression in residents. Groups were similar in attributing the behavioral symptoms to dementia and to underlying medical conditions, but PhDs were more likely to indicate depression, loneliness/boredom, staff-resident communication, and insufficient activities as etiologies. Use of pharmacological and nonpharmacological interventions of MDs and NPs were similar. PhDs reported least satisfaction with treatment. Conclusion Awareness of similarities and differences in the approaches of different health professionals can facilitate interdisciplinary interaction in providing care for dementia-associated behavior problems in nursing home residents. Copyright © 2011 John Wiley & Sons, Ltd.

This study investigated eating-related habits and their importance in older people and compared those living in private residences with those in senior retirement community housing. A convenience sample of 58 seniors answered eating-related items from the Self-maintenance Habits and Preferences in Elderly questionnaire (SHAPE). Meal location, companions, concurrent activities, portion size, and food variety differed between private and retirement housing for some meals, but the overall importance assigned to eating practices was similar. The meals themselves appeared to be more important than any specific socio-environmental element. Eating practices associated with dinner were more important than those for the other meals.