bluuebunny/crossref_metadata_2025 huggingface dataset:
An exploration of the experience of using calendar reminders for people with dementia and family carers
Authors: Evans Nina , Collier Lesley
Published: December 2017

People with dementia and family carers often use calendars to support time orientation to maintain routine. However, little is known about the use of calendars as a compensatory strategy. This study examines the experience and practicalities of using calendar reminders from the perspective of people with dementia and family carers. Six dyads were recruited and interviewed at home. Interpretative Phenomenological Analysis was used to develop a narrative interpreted from an occupational therapy perspective. The themes were reflected on during two subsequent focus groups. Findings suggested that calendars are used either intensively as external memory records or more casually and randomly for reassurance. The familiarity and location of the calendar and its utility to the person with dementia and carer, all contribute to its efficacy. For carers the experience of supporting calendar reminders encompasses practical, cognitive and emotional effort. There was little awareness amongst participants of electronic assistive technology.
Electronic memory aids for people with dementia experiencing prospective memory loss: A review of empirical studies
Authors: King Alexandra C , Dwan Corinna
Published: December 2017

This paper details a review of the literature on the use of electronic aids for prospective memory for people with dementia. Key findings of the review are that: electronic memory aids show potential for supporting people’s prospective memory but the devices and software applications need further development in order to function reliably; sample sizes of studies are often very small, limiting the generalisability of their findings; few studies of devices are conducted in users’ home environments; and most of the studies focus on the effectiveness of the electronic memory aid, rather than outcomes for users, such as improved daily functioning, quality of life, or social connectedness. The review concludes that future studies with robust devices are required that explicitly focus on the varying needs and capacities of people with dementia, in order to generate additional evidence for the effectiveness of electronic memory aids for this cohort.
Decisions and attitudes regarding participation and proxy in clinical trials among patients with impaired cognitive function
Authors: Stormoen S , Tallberg IM , Almkvist O , Eriksdotter M , Sundström E
Published: December 2017

Background

Medical decision-making capacity is impaired in Alzheimer’s disease and mild cognitive impairment. Medical decision-making capacity depends on many different cognitive functions and varies due to situation and cognitive, social, and emotional status of the patient. Our aim was to analyze dementia patients’ capacity to estimate risks and benefits in different clinical trials and determine how cognitive decline affects their attitude toward possible participation and proxy consent.

Methods

Groups: Alzheimer’s disease (n = 20), mild cognitive impairment (n = 21) and healthy controls (n = 33). Two hypothetical clinical trials, a standardized interview and three visual analogue scales were used to investigate decisions, estimations, reasoning, and attitudes.

Results

A general positive attitude toward participation in clinical trials was shown among all groups. Both patients and controls motivated possible participation as “own-benefit” in the low-risk trial and to “help-others” in the high-risk trial. Individuals who accepted to participate in the high-risk trial scored lower in medical decision-making capacity in comparison to participants who would not have participated (p < .01). Patients in the Alzheimer’s disease but not mild cognitive impairment and healthy control groups underestimated risks and overestimated benefits in the high-risk/low-benefit trial (p < .05). A family member was most frequently chosen as possible proxy (91%).

Conclusions

Medical decisions and research consent should be interpreted with caution in patients who are already in early stages of dementia, as the patients’ acceptance to participate in high-risk trials may be due an insufficient decisional capacity and risk analysis, accelerated by a general desire to make good to society. We emphasize the use of a standardized tool to evaluate medical decisional capacity in clinical research.
A review of couple-centred interventions in dementia: Exploring the what and why – Part A
Authors: Bielsten Therése , Hellström Ingrid
Published: December 2017

Introduction

Symptoms of dementia bring about challenges to couples’ relationships. Relationship-focused support has been highlighted to be of significant importance for sustained relationship quality and to reduce the negative impact of dementia on the dyadic relationship. This review aimed to explore the ‘what’ and ‘why’ of interventions aimed at couples where one partner has a diagnosis of dementia and in which the couple jointly participate.

Method

Searches were performed in Academic Search Premier, CINAHL, PsycINFO, PubMed, Scopus and Web of Science from January 2000 to August 2017.

Results

Six studies were included. Objectives for the person with dementia was related to cognitive function and for the care partner the objectives were related to well-being. The majority of the outcomes were mirrored by the objectives and focused on cognitive function for people with dementia and depression and relationship quality for care partners. Our findings indicate that people with dementia should be included in the assessment of the relationship in order to gain an overall picture of relationship dynamics and to increase tailored support in couple-centred interventions.

Conclusions

The findings of this review indicate that joint interventions for people with dementia and care partners are lacking a genuine dyadic approach where both partners’ views of their relationship are valued. In order to identify targets for support and to use the appropriate outcome measures, the quality of the relationship should be recognised and taken into account. Moreover, there is a lack of a salutogenic approach in couple-centred interventions in which couples’ strengths and resources can be identified and supported.
Memory Keeper: A prototype digital application to improve engagement with people with dementia in long-term care (innovative practice)
Authors: McAllister Margaret , Dayton Jeanne , Oprescu Florin , Katsikitis Mary , Jones Christian M
Published: December 2017

People with dementia living in long-term care commonly experience loneliness and lack of meaningful activity. Memory Keeper is a prototype digital application that presents personalised prompts to stimulate reminiscences and meaningful engagement with formal and informal carers. A trial involving three persons with dementia in long-term care and seven family and staff members revealed no negative responses to the device or application. Family members said it was valuable in improving the quality of engagement and made visits more enjoyable. If practical and technical barriers can be overcome, Memory Keeper could become an innovative family engagement tool for dementia management.
The role of participatory music making in supporting people with dementia in hospital environments
Authors: Daykin Norma , Parry Barbara , Ball Kerry , Walters David , Henry Ann , Platten Bronwyn , Hayden Rachel
Published: December 2017

Background

Improving the quality of care for people with dementia in general hospitals is a key priority. Creative activities including music have been examined for their potential role in enhancing quality of life for people with dementia, although relatively few studies have evaluated their use in acute hospital settings.

Methods

A mixed methods study examined the effects of a ten week period of weekly music sessions on the wellbeing of patients with dementia and on the ward environment in an acute elderly care service in a UK hospital. Potential effects of the music project on the ward environment were examined by comparing descriptive quantitative ward level data for two equivalent time periods, one with music and one with no music. The impact of the activity on participants’ wellbeing was assessed using observational data as well as semi-structured interviews and focus groups with patients, visitors, the musician and staff.

Results

Ward level data were available for 85 patients with a dementia diagnosis who had stayed on the wards during the study periods. Comparison between the two periods showed a number of differences between the music and the non-music time periods, including a reduction in prescription of antipsychotic drugs. However, many factors could have contributed to the differences in the ward environment. Observational data revealed nuanced responses to music and suggested that participants generally enjoyed the activity. The impacts of music making were mediated strongly by staff responses and hospital organisation.

Conclusion

Data from this limited pilot study suggest that music is a useful intervention for enhancing patient and staff experiences and improving care in acute dementia care environments. The suggestion that use of anti-psychotic drugs may be reduced when music is present warrants further research.
Global perspectives on dementia and art: An international discussion about changing public health policy
Authors: Whitehouse Peter J , Vella Burrows Trish , Stephenson Duncan
Published: December 2017

In an era of global environmental deterioration and income inequity, public health faces many challenges, including the growing number of individuals, especially older people, with chronic diseases. Dementia is increasingly being seen not just as a biomedical problem to solve but as a public and community challenge to address more broadly. Concepts like prevention, brain health, and quality of life/well-being are receiving more attention. The engagement of community in addressing these challenges is being seen as critical to successful social adaptation. Arts programs are reinvigorating cultural responses to the growing number of older people with cognitive challenges. The humanities offer ways of understanding the power of words and stories in public discourse and a critical lens though which to view political and economic influences. In this paper, we report on a panel held in London on the occasion of the conference at the Royal Society for Public Health in March, 2017, in which the authors presented. Key issues discussed included problem framing, the nature of evidence, the politics of power and influence, and the development of effective interventions. In this paper, we review the rejection of two policies, one on dementia and one on the arts and humanities in public health, by the American Public Health Association; the emergence of policies in the UK; and some of the state of the art practices, particularly in training, again focusing on the UK.
The development of positive psychology outcome measures and their uses in dementia research: A systematic review
Authors: Stoner Charlotte R , Stansfeld Jacki , Orrell Martin , Spector Aimee
Published: December 2017

Positive psychology is gaining credence within dementia research but currently there is a lack of outcome measures within this area developed specifically for people with dementia. Authors have begun adopting positive psychology measures developed with other populations but there is no consensus around which are more appropriate or psychometrically robust. A systematic search identified measures used between 1998 and 2017 and an appraisal of the development procedure was undertaken using standardised criteria enabling the awarding of scores based on reporting of psychometric information. Twelve measures within the constructs of identity, hope, religiosity/spirituality, life valuation, self-efficacy, community and wellbeing were identified as being used within 17 dementia studies. Development procedures were variable and scores on development criterion reflected this variability. Of the measures included, the Herth Hope Index, Systems of Belief Inventory and Psychological Wellbeing Scale appeared to be the most robustly developed and appropriate for people with dementia.
Activity Preferences of persons with dementia: An examination of reports by formal and informal caregivers
Authors: Cohen-Mansfield Jiska , Gavendo Rachel , Blackburn Erin
Published: December 2017

Objectives

The aims of this study are (1) to describe the types of leisure activities preferred by persons with dementia in the past and present, as reported by family members and therapeutic recreation staff members, and (2) to examine the influence of demographic and functional abilities variables on the perceived current interest of persons with dementia.

Method

Family members of persons with dementia and therapeutic recreation staff involved in the care of those persons completed an activities preference assessment concerning the persons with dementia. Participants were recruited from a nursing home and a senior day center. Family members completed the assessment for the past and present, and staff members completed the assessment for the present.

Results

For present preferences, music was the most often preferred activity according to both family and staff, followed by reminiscence and reading, while the least desirable activity was cooking/baking according to family and trivia games according to the staff. Current preferences were significantly related to past preferences. Gender was also related to preference for some activities. A significant reduction in preference from the premorbid past to the present was found for music, reading, and cooking. Additionally, the number of activities persons preferred as reported by both caregiver groups was affected by dementia. Family members tended to report lower preference levels for the activities in the present in comparison to the staff, and they were also more likely to report not knowing the present level of preference than therapeutic recreation staff members.

Conclusion

The assessments by both therapeutic recreation staff members and family members shed light on leisure preferences of persons with dementia, while the varying reports reflect a possibly different perspective of the two caregiver groups.
Development of a psychosocial group intervention for individuals with mild cognitive impairment (innovative practice)
Authors: Barton Karen , Johnson Ian , Mountford Amy
Published: December 2017

A diagnosis of mild cognitive impairment is associated with an increase in anxiety and depression and a decrease in psychological well-being. Despite this, individuals with mild cognitive impairment may not receive the appropriate support needed to manage the emotional and practical elements of their diagnosis. A psychosocial group intervention based on the ‘Recovery Model’ was developed in order to meet these needs. Outcome data from a trial of this group intervention indicated it was successful in meeting its aims.
Influence of hope, social support, and self-esteem in early stage dementia
Authors: Cotter Valerie T , Gonzalez Elizabeth W , Fisher Kathleen , Richards Kathy C
Published: December 2017

Background

People in the early stages of dementia adjust to the illness through stages of awareness, coping, and evaluation. Studies have found that hope, social support, and self-esteem facilitate coping, adjustment, and adaptation in chronic illness.

Objective

The purpose of this descriptive study was to examine the relationships between hope, social support, and self-esteem in individuals with early stage dementia.

Methods

Data were obtained from 53 individuals with early stage dementia. The scores on the Herth Hope Index, Social Support Questionnaire Short-Form, and the State Self-Esteem Scale were analyzed using linear regression.

Results

Hope was moderately associated with self-esteem ( r = .49, p < .001). Hope accounted for 25% of the variance in self-esteem and was a key component in predicting self-esteem. No significant relationship was found between social support and self-esteem.

Conclusion

Findings suggest that hope may be an important factor to help individuals manage potential threats to self-esteem in the experience of early stage dementia. Strategies to inspire hope and then enhance self-esteem are promising for individuals living with early stage dementia.
The Support, Health, Activities, Resources, and Education program for early stage dementia: Results from a randomized controlled trial
Authors: Whitlatch Carol J , Heid Allison R , Femia Elia E , Orsulic-Jeras Silvia , Szabo Sarah , Zarit Steven H
Published: December 2017

Purpose

A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, (4) improving well-being, and (5) evoking satisfaction with components of the intervention.

Design and methods

Persons with early stage dementia ( n = 128) and their caregivers ( n = 128) were randomly assigned either to Support, Health, Activities, Resources, and Education Program or a control condition. Intervention efficacy was evaluated for completion of a care plan, use of services, dyadic relationship functioning, participant well-being, and program satisfaction.

Results

Dyads in the treatment condition were able to construct a balanced care plan and increased their use of services. Dyadic functioning improved for one dimension (decreased emotional disruptions). Compared to the control condition, satisfaction with the intervention was higher for caregivers enrolled in Support, Health, Activities, Resources, and Education Program on four of five dimensions and one dimension for persons with dementia. Implications: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care.
The Kinect Project: Group motion-based gaming for people living with dementia
Authors: Dove Erica , Astell Arlene
Published: December 2017

Engaging in enjoyable activities is an essential part of well-being, but people with dementia can find participation increasingly difficult. Motion-based technologies can provide meaningful engagement in a wide range of activities, but for people with dementia to take advantage of these devices requires a good understanding of how best to select and present these activities to this population. The objective of this study was to explore the use of motion-based technology (Xbox Kinect) as a group activity for people with dementia who attend adult day programmes. This qualitative study took place in an adult day programme for older adults with age-related challenges. Participants (n = 23) were observed while playing a digital bowling game presented on Xbox Kinect one hour per week for a period of 20 weeks, to capture naturalistic data. Field notes generated through observations were transcribed and analysed to identify emerging themes. The findings revealed three predominant themes which illustrate the potential of motion-based technology as a group activity for people with dementia who attend adult day programmes: (a) the importance of having a trained trainer, (b) learning versus mastery and (c) playing ‘independently together’. People with dementia can learn to play games presented on motion-based technology and enjoy doing so. Furthermore, using the technology in a group setting fostered an encouraging and supportive environment which further contributed to the leisure experience. However, to be used most effectively, staff must be trained to set-up and interact with the technology, as well as introduce, teach and support people with dementia to use it.
A systematic scoping review and synthesis of dementia and communication theory
Authors: Ennis Liam , Mansell Warren , McEvoy Phil , Tai Sara
Published: December 2017

Aim

This review considers the theoretical literature concerning communication between a person with dementia and a person without dementia.

Methods

Theoretical accounts of communication between a person with dementia and a person without dementia were identified through database searches, hand searching of reference lists and contacting experts in the topic area.

Results

Twenty-one articles were included in the final review, yielding 18 different theoretical accounts of communication in the context of dementia. Thematic synthesis showed that four categories could account for the majority of the material described in these theories, even though they were derived from very different perspectives. These categories were mutuality, personhood, anxiety reduction and environmental considerations.

Discussion

The four categories identified in the thematic synthesis were reminiscent of Kitwood’s theory of person-centred dementia care. Different interpretations of this finding are considered. Most theoretical accounts focused on the relational aspects of communication. This meant that societal and individual accounts of communication in the context of dementia were relatively impoverished in terms of theory.

Conclusions

There is widespread agreement regarding the important components of good quality communication in the context of dementia. This suggests exciting opportunities for collaboration between apparently disparate bodies of literature. Individual and societal accounts of communication in the context of dementia are relatively neglected and would benefit from more research.
The support needs of family caregivers of persons with dementia in India: Implications for health services
Authors: Lamech Neha , Raghuraman Shruti , Vaitheswaran Sridhar , Rangaswamy Thara
Published: December 2017

The World Alzheimer’s Report estimates that 4.1 million people in India have dementia. Caregivers of persons with dementia face physical, psychological, social and financial problems related to caring for a person with dementia. Literature on the caregiving experience however is highly specific to the sociocultural context and cannot be generalized. In low and middle income countries much of the caregiving takes place in people’s homes and is provided by family caregivers.

Aim

This study aims to explore the needs and challenges of family caregivers in Chennai, India.

Method

Focus group discussions and in-depth interviews were conducted using a topic guide. Participants were divided based on socio-economic status to ensure homogeneity. An inductive thematic approach was used to analyse and code the data. A total of 19 participants took part in the study.

Results

The results capture the experience of caregivers of persons with dementia in seeking help and accessing treatment. Priority caregiver needs were identified, including the need for sensitised, skilled health workers, information on dementia and advanced care needs and cost effective services.

Conclusion

The findings of this study strongly support the need to strengthen health systems capacity, make the health care services dementia friendly and cost effective. The influence of culture in shaping help seeking was evident in our findings. Interventions for caregivers and persons with dementia need to be developed and tested so they might be made fit for purpose and scaled up. It will be important to identify how these services can be adapted for use in low and middle income country resource setting like India.
Re-imagining Bernstein’s restricted codes
Authors: Ivinson Gabrielle
Published: December 2017

While accepting that the concept of restricted code has a troubled history that resulted in Bernstein being associated with deficit models of working-class life, it is argued that the concept should be re-imagined rather than abandoned. Bernstein’s early work refers to restricted code as a form of condensed, shorthand established through familiarity that was not tied to class per se. In Volume 2 of Class, Codes and Control social class was an independent variable in the research designs and coding only that which could be explicitly spoken, produced working class groups as inferior in comparison to middle class groups: Bernstein’s disquiet can be sensed in many places across his work where he explicitly renounced a deficit model. Methodological and theoretical work on embodied knowledge is used here to explicate the more-than, codeable features of restricted codes. An illustration from studies in ex-coalmining, working-class communities is used to explore what is missed in conventional approaches to data coding. Other studies in ex-mining communities reveal the intergenerational transmission of rich resources that were vital for community survival. Re-imagining restricted codes as relational assemblages recognises the value of the dynamic, creative and intergenerational features of localised, embodied knowledge.
Degradation model of multi-signals based on a novel feature-selection criterion
Authors: Wang Jia , Li Zhigang
Published: December 2017

In most data-driven prognostics approaches, features extracted from measurements are used in the model to indicate the degradation process and determine the reliability in real time. However, many features with physical meaning commonly exhibit no variation until a failure occurs, which leaves little time to conduct maintenance strategies or replacement policies. Hence, this research presents a novel feature-selection criterion, which enables to select a feature with an obvious trend throughout the entire life, thereby avoiding the problem mentioned. In addition, for reliability estimation and condition monitoring, an innovative model-building method based on identical statistical features extracted from multi-signals is developed, in which the features are considered to be dependent and governed by a copula function. An example is provided to illustrate the application of the proposed two-step methods. The result shows that this method is more convincible and realistic for reliability estimation.
Developing a methodology for public engagement with critical research
Authors: Boyask Ruth , Vigurs Katy
Published: December 2017

In this article we argue that a refined understanding of ‘public’ and ‘public engagement’ can help researchers who produce critical research make better decisions towards achieving policy influence. We acknowledge the challenges critical researchers face in putting their research to work within the public domain. Critical research struggles to gain influence in bounded public spheres where research is valued as a consumable commodity rather than for its integrity or capacity for informing change. A starting point for developing a method of engagement is to understand better ‘publics’ and the different ways they may be conceptualised. We draw on a framework of three conceptualisations of the public in public engagement: bounded, normative and emergent. We use this framework to analyse our own experience of public engagement and attempts at policy influence in the Respecting Children and Young People Project. Through this analysis we recognise alternative ways to conceive of publics that may direct us away from some courses of action, and open new possibilities for public engagement with critical research.
Never Declared Brain Dead Potential Organ Donors—An Additional Source of Donor Organs?
Authors: Webster Patricia A. , Markham Lori E.
Published: December 2017

Context:

Patients never declared brain dead may represent an additional source of donor organs.

Objective:

To determine the number of likely brain dead potential donors who are never declared brain dead and to compare them with brain dead and donation after cardiac death potential organ donors.

Design, Setting, and Participants:

This study was a retrospective chart review of all catastrophically brain-injured patients referred to a single-organ procurement organization (OPO) over a 4-year period. This study identified 159 likely brain dead potential organ donors, 902 brain dead potential organ donors, and 357 potential donation after circulatory death donors over a 4-year period.

Interventions:

None.

Main Outcome Measures:

This study did not predetermine outcome measures before data collection because the study group, likely brain dead potential organ donors, had not previously been described.

Results:

Likely brain dead potential donors were significantly older than brain dead potential donors ( P < .0001) but were otherwise not different demographically. They were more likely to be a late referral to the OPO ( P < .0001) and less likely to be in the donor registry ( P < .0001). The most commonly identified factors associated with a failure to declare brain death were an unwillingness to continue supportive care by the family, premention of donation, a nontimely imminent death referral, known prior objection to donation, terminal instability, and a lack of cooperation with the OPO.
A Journal-Level Analysis of Progress in Transplantation
Authors: Feeley Thomas , Lee Seyoung , Moon Shin-Il
Published: December 2017

Context:

Citations to articles published in academic journals represent a proxy for influence in bibliometrics.

Objective:

To measure the journal impact factor for Progress in Transplantation over time and to also identify related journals indexed in transplantation and surgery.

Design:

Data from Journal Citation Reports (ISI web of science) were used to rank Progress in Transplantation compared to peer journals using journal impact and journal relatedness measures. Social network analysis was used to measure relationships between pairs of journals in Progress in Transplantation’s relatedness network.

Main Outcome Measures:

Journal impact factor and journal relatedness.

Results:

Data from 2010 through 2015 indicate the average journal article in PIT was cited 0.87 times (standard deviation [SD] = 0.12) and this estimate was stable over time. Progress in Transplantation most often cited American Journal of Transplantation, Transplantation, American Journal of Kidney Diseases, and Liver Transplantation. In terms of cited data, the journal was most often referenced by Clinical Transplantation, Transplant International, and Current Opinion in Organ Transplantation.

Conclusion:

The journal is listed both in surgery and transplantation categories of Journal Citation Reports and its impact factors over time fare better with surgery journals than with transplant journals. Network data using betweenness centrality indicate Progress in Transplantation links transplantation-focused journals and journals indexed in health sciences categories.
Grief as a Mystical Journey: Fowler’s Stages of Faith Development and Their Relation to Post-Traumatic Growth
Authors: Daniel Terri
Published: December 2017

This paper explores the relationship between embedded theological assumptions and the ways in which one copes with loss and bereavement. Based on James Fowler’s research on Stages of Faith Development, the paper examines common Western psycho-spiritual beliefs related to loss, trauma, and grief, and proposes that profound loss experiences have the potential to lead the griever to a shift in theological thinking. It addresses the ways in which a “crisis of faith” triggered by loss or trauma prompts the questioning of closely-held beliefs, which can lead to an expanded spiritual perspective that can be beneficial to the healing process.
Towards a faith-based understanding of moral injury
Authors: Kopacz Marek S. , Ducharme Courtney , Ani David , Atlig Ahmet
Published: December 2017

In recent years, the issue of moral injury (MI) has garnered considerable attention, especially as related to the military experiences of Service Members and Veterans. This brief communication is intended to provide an overview of Christian, Jewish, and Islamic understandings of MI. The intent is to draw attention to a faith-based etiology for MI, thereby facilitating dialogue and discussion on the relevance of spiritual and pastoral care to supporting those affected by MI.
Handling Stereotypes of Religious Professionals: Strategies Hospice Chaplains Use When Interacting with Patients and Families
Authors: Lindholm Kristin
Published: December 2017

Stereotypes of religious professionals can create barriers for those who provide spiritual/pastoral care. Through interviews and journal entries, hospice chaplains ( n = 45) identified the following stereotypes that affected their work: chaplains as people whom others try to impress, who only talk about spiritual and religious topics, who are male, and who try to convert others. Participants reported using a variety of communication strategies to counteract stereotypes and make meaningful connections with the people they serve.
Change in Quantitative EEG Theta Cordance as a Potential Predictor of Repetitive Transcranial Magnetic Stimulation Clinical Outcome in Major Depressive Disorder
Authors: Hunter Aimee M. , Nghiem Thien X. , Cook Ian A. , Krantz David E. , Minzenberg Michael J. , Leuchter Andrew F.
Published: December 2017

Repetitive transcranial magnetic stimulation (rTMS) has demonstrated efficacy in major depressive disorder (MDD), although clinical outcome is variable. Change in the resting-state quantitative electroencephalogram (qEEG), particularly in theta cordance early in the course of treatment, has been linked to antidepressant medication outcomes but has not been examined extensively in clinical rTMS. This study examined change in theta cordance over the first week of clinical rTMS and sought to identify a biomarker that would predict outcome at the end of 6 weeks of treatment. Clinically stable outpatients (n = 18) received nonblinded rTMS treatment administered to the dorsolateral prefrontal cortex (DLPFC). Treatment parameters (site, intensity, number of pulses) were adjusted on an ongoing basis guided by changes in symptom severity rating scale scores. qEEGs were recorded at pretreatment baseline and after 1 week of left DLPFC (L-DLPFC) rTMS using a 21-channel dry-electrode headset. Analyses examined the association between week 1 regional changes in theta band (4-8 Hz) cordance, and week 6 patient- and physician-rated outcomes. Theta cordance change in the central brain region predicted percent change in Inventory of Depressive Symptomology–Self-Report (IDS-SR) score, and improvement versus nonimprovement on the Clinical Global Impression–Improvement Inventory (CGI-I) ( R2 = .38, P = .007; and Nagelkerke R2 = .78, P = .0001, respectively). The cordance biomarker remained significant when controlling for age, gender, and baseline severity. Treatment-emergent change in EEG theta cordance in the first week of rTMS may predict acute (6-week) treatment outcome in MDD. This oscillatory synchrony biomarker merits further study in independent samples.
Examining Data Repository Guidelines for Qualitative Data Sharing
Authors: Antes Alison L. , Walsh Heidi A. , Strait Michelle , Hudson-Vitale Cynthia R. , DuBois James M.
Published: December 2017

Qualitative data provide rich information on research questions in diverse fields. Recent calls for increased transparency and openness in research emphasize data sharing. However, qualitative data sharing has yet to become the norm internationally and is particularly uncommon in the United States. Guidance for archiving and secondary use of qualitative data is required for progress in this regard. In this study, we review the benefits and concerns associated with qualitative data sharing and then describe the results of a content analysis of guidelines from international repositories that archive qualitative data. A minority of repositories provide qualitative data sharing guidelines. Of the guidelines available, there is substantial variation in whether specific topics are addressed. Some topics, such as removing direct identifiers, are consistently addressed, while others, such as providing an anonymization log, are not. We discuss the implications of our study for education, best practices, and future research.
Management of Adolescent–Parent Dyads’ Discordance for Willingness to Participate in a Reproductive Health Clinical Trial
Authors: Francis Jenny K. R. , Dapena Fraiz Lauren , de Roche Ariel M. , Catallozzi Marina , Radecki Breitkopf Carmen , Rosenthal Susan L.
Published: December 2017

The objective of this study is to understand the resolution of discordance between adolescent–parent dyads about participation in research. Adolescent (14-17 years) and parent dyads were recruited from NYC pediatric clinics to assess attitudes toward research participation. A subset of dyads participated in videotaped discussions about participation in a hypothetical study. Videos from dyads that held strongly discordant opinions about participation ( n = 30) were content-coded and analyzed using a thematic framework approach. Strategies used to resolve discordance included asserting authority, granting autonomy, or recognizing inaccurate assumptions using a variety of communication behaviors. Missed opportunities to enroll initially discordant dyads may be avoided by allowing time for adolescents and parents to elicit information, clarify a situation, or convince the other.
Just-in-time consent: The ethical case for an alternative to traditional informed consent in randomized trials comparing an experimental intervention with usual care
Authors: Vickers Andrew J , Young-Afat Danny A , Ehdaie Behfar , Kim Scott YH
Published: December 2017

Informed consent for randomized trials often causes significant and persistent anxiety, distress and confusion to patients. Where an experimental treatment is compared to a standard care control, much of this burden is potentially avoidable in the control group. We propose a “just-in-time” consent in which consent discussions take place in two stages: an initial consent to research from all participants and a later specific consent to randomized treatment only from those assigned to the experimental intervention. All patients are first approached and informed about research procedures, such as questionnaires or tests. They are also informed that they might be randomly selected to receive an experimental treatment and that, if selected, they can learn more about the treatment and decide whether or not to accept it at that time. After randomization, control patients undergo standard clinical consent whereas patients randomized to the experimental procedure undergo a second consent discussion. Analysis would be by intent-to-treat, which protects the trial from selection bias, although not from poor acceptance of experimental treatment. The advantages of just-in-time consent stem from the fact that only patients randomized to the experimental treatment are subject to a discussion of that intervention. We hypothesize that this will reduce much of the patient’s burden associated with the consent process, such as decisional anxiety, confusion and information overload. We recommend well-controlled studies to compare just-in-time and traditional consent, with endpoints to include characteristics of participants, distress and anxiety and participants’ understanding of research procedures.
Ethics and practice of Trials within Cohorts: An emerging pragmatic trial design
Authors: Kim Scott YH , Flory James , Relton Clare
Published: December 2017

Background:

With increasing emphasis on pragmatic trials, new randomized clinical trial designs are being proposed to enhance the “real world” nature of the data generated. We describe one such design, appropriate for unmasked pragmatic clinical trials in which the control arm receives usual care, called “Trials within Cohorts” that is increasingly used in various countries because of its efficiency in recruitment, advantages in reducing subject burden, and ability to better mimic real-world consent processes.

Methods:

Descriptive, ethical, and US regulatory analysis of the Trials within Cohorts design.

Results:

Trials within Cohorts design involves, after recruitment into a cohort, randomization of eligible subjects, followed by an asymmetric treatment of the two arms: those selected for the experimental arm provide informed consent for the intervention trial, while the data from the control arm are used based on prior broad permission. Thus, unlike the traditional Zelen post-randomization consent design, the cohort participants are informed about future research within the cohort; however, the extent of this disclosure currently varies among studies. Thus, ethical analysis is provided for two types of situations: when the pre-randomization disclosure and consent regarding the embedded trials are fairly explicit and detailed versus when they consist of only general statements about future data use. These differing ethical situations could have implications for how ethics review committees apply US research rules regarding waivers and alterations of informed consent.

Conclusion:

Trials within Cohorts is a promising new pragmatic randomized controlled trial design that is being increasingly used in various countries. Although the asymmetric consent procedures for the experimental versus control arm subjects can initially raise ethical concerns, it is ethically superior to previous post-randomization consent designs and can have important advantages over traditional trial designs.
Between the Raj and Raja: Taking Śakuntalā on Tour in Colonial India
Authors: Kulkarni Kedar A.
Published: December 2017

This article is about the performative effects of the Abhijñānaśākuntalam, more popularly known as Shakuntala, in western India during the nineteenth century.Noting the play’s importance for various oriental discourses and romanticisms across Europe, this article instead charts the play’s interpolation of various historical tropes and social issues that become legible through the play’s broader theatrical and performative contexts within India. Issues such as a feeling of social fragmentation, the disintegration of Princely (Kingly) power in colonial India, and tense relations between Brahmans and Princes became legible through this play, its performances, and its circulation. Far from the imaginative abstraction that it may have been for its occidental audiences, Shakuntala, in India, easily became resonant with and reproduced various local concerns, making them legible and felt through performance.
Algorithms used to identify ventricular arrhythmias and sudden cardiac death in retrospective studies: a systematic literature review
Authors: Ye Yizhou , Larrat E. Paul , Caffrey Aisling R.
Published: December 2017

Drug-induced QT interval prolongation may increase the risk of sudden cardiac death or ventricular arrhythmias (SCD/VA), and therefore affects the safety profile of medications. Administrative databases can be used to inform pharmacoepidemiologic drug safety studies for such rare events. In order to compare event rates between studies, validated operational definitions of these events are needed. We conducted a systematic literature review in PubMed to identify algorithms for SCD/VA. Twenty-two studies were included in the review. Fifteen (68%) studies evaluated International Classification of Diseases, 9th revision (ICD-9) based medical data, of which six utilized a common, validated operational definition. This algorithm was based on principal hospitalization discharge diagnosis or first-listed emergency department visit diagnosis, with an average positive predictive value (PPV) of 85%. Four studies evaluated ICD-9 based death data, of which three utilized a common algorithm with an average PPV of 88%. Further validation of ICD, 10th revision algorithms are needed. In conclusion, we identified a validated algorithm for SCD/VA in medical data, as well as in death data. As such, to ensure comparability between new research and the existing literature, pharmacoepidemiologic research in this area should utilize common, validated algorithms, such as the ones identified in our review, to operationally define these events.
Evolution of non-communicable disease prevention and control in China
Authors: Han Mengge , Shi Xiao Ming , Cai Chun , Zhang Yong , Xu Wang Hong
Published: December 2017

The 70-year experience of China in fighting against non-communicable diseases (NCDs) can be classified into three distinct periods: 1) the disease-oriented strategy period (from 1950 to 1994); 2) the risk factor-focused strategy period (from 1995 to 2008); and 3) the social and policy priority strategy period (since 2009). A number of projects were successful and valuable experience and lessons were accumulated during the three periods. Due to the underestimation of the ‘explosive’ epidemic of NCDs, however, it took China quite a long time to find the right path to curb the upward trend in these diseases. In this commentary, the authors review the evolution of strategies and the healthcare service system, examine advances and challenges, and summarize experience and lessons in NCD control in China. In view of development, China’s experience may have valuable implications for other low- and middle-income countries.
Rotator cuff disorders: a survey of current (2016) UK physiotherapy practice
Authors: Bury Julie , Littlewood Chris
Published: December 2017

Background

Shoulder pain is a common musculoskeletal presentation, with disorders of the rotator cuff (RC) regarded as the most frequent cause. Conservative treatment is often the initial management; however, findings from a previous survey showed considerable variations in clinical practice, including the use of modalities that are not supported in the literature, suggesting that research is not impacting on practice. The present study aimed to survey current UK physiotherapy practice for the management of RC disorders and to determine whether this has changed over the 5-year period since the last survey was conducted.

Methods

A cross-sectional online survey of UK physiotherapists was conducted.

Results

One hundred and ninety-one respondents completed the survey which showed that advice/education and some form of exercise therapy are most commonly used as a management strategy for RC disorders. There is a lack of agreement however regarding exercise prescription. The survey suggests less use of passive modalities, indicating that practice has advanced over the last 5 years in line with the current evidence.

Conclusions

The present study has highlighted that the clinical practice of the survey respondents was in line with current recommendations from research. Hence, in contrast to the survey conducted 5 years previously, research appears to be impacting on practice, which is a positive finding.
In Memoriam: Graham T. T. Molitor (1934–2017)
Authors: Gary Jay
Published: December 2017

World Futures Review ( WFR) offers a summary of “The Molitor Model” plus six reflections on Graham Molitor’s contributions to the futures field.