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Objectives: A prospective parallel cohort trial was conducted to compare outcomes of patients treated with maxillary protraction vs LeFort 1 maxillary advancement surgery.Setting and Sample Population: The primary site for the clinical trial is Children's Hospital Los Angeles; the satellite test site is Seattle Children's Hospital. All patients have isolated cleft lip and palate and a skeletal Class III malocclusion.Material and Methods: A total of 50 patients, ages 11-14, will be recruited for the maxillary protraction cohort. The maxillary surgery cohort consists of 50 patients, ages 16-21, who will undergo LeFort 1 maxillary advancement surgery. Patients with additional medical or cognitive handicaps were excluded from the study.Results: Current recruitment of patients is on track to complete the study within the proposed recruitment period.Conclusion: This observational trial is collecting information that will examine dental, skeletal, financial and quality-of-life issues from both research cohorts. [ABSTRACT FROM AUTHOR]

Background: Stroke profoundly affects quality of life (QOL), including loss of employment, reduced social activity, shrinking social networks and low mood. Dysgraphia (impaired writing) is a common symptom of aphasia yet is rarely targeted in rehabilitation. Recent technological advances might challenge this, since much communication is now conducted digitally through writing. The rehabilitation of writing may therefore help to address the wider consequences of stroke and aphasia. Aims: Can assistive technology (AT) training for people with dysgraphia: (1) improve written output, and are gains achieved only with AT? (2) improve reading comprehension scores, and are gains achieved only with AT? and (3) affect social participation, mood or QOL Methods and Procedures: Design A mixed‐methods, repeated measures, small group study design was adopted (qualitative outcomes will be reported elsewhere). Participants: Recruited from community settings, for example, Stroke Association communication support groups. Inclusion criteria: over 18 years old, aphasia due to stroke, acquired dysgraphia, writing more impaired than speech, fluent English prior to stroke, access to computer and Internet. Exclusion criteria: currently receiving speech and language therapy, significant cognitive impairment, neuromuscular/motor‐speech impairments/structural abnormalities, developmental dyslexia, uncorrected visual/auditory impairments. Procedures: Screening and diagnostic assessments at time T1 (first baseline). Outcome measures at T1; repeated at T2 (second baseline), T3 (end of intervention), T4 (3‐month follow up). Social participation assessment and cognitive monitoring at T2, T3, T4. Intervention: Seven–ten hours individual therapy weekly and additional email support. Participants were trained to operate Dragon NaturallySpeaking (speech to text package) and ClaroRead (read writing aloud). Outcome measures were administered on pen and paper (control) and on computer, with AT enabled only at T3, T4. Outcomes and Results: Computer narrative writing was significantly improved by AT training (Friedman's χ2 (3) = 8.27, p = 0.041), indicating a compensatory effect of AT. Though reading comprehension significantly improved in the computer condition (Friedman's χ2 (3) = 21.07, p = 0.001), gains could not be attributed to the AT. Gains were achieved only when measures were administered on the keyboard, with AT enabled. Thus, a compensatory rather than remediatory effect was suggested. Social network size significantly increased; there were no significant changes in mood/QOL. Individual success rates varied. Conclusion and Implications: The customisable AT training was acceptable to participants and resulted in significantly improved narrative writing. Compensatory AT interventions are a useful adjunct to remediatory writing interventions and may particularly support functional writing. WHAT THIS PAPER ADDS: What is already known on this subject: Writing is rarely spared in aphasia and may present as the most impaired communication modality. Yet, people with aphasia report that writing is seldom included in their rehabilitation. Many communication activities are now conducted digitally through writing, therefore rehabilitation of this is more important than ever before. This study sought to address whether an assistive technology (AT) software package can improve writing and whether any changes were compensatory or remediatory. What this study adds to existing knowledge: This group study found that AT training led to gains in written discourse and social network in people with aphasia and dysgraphia. Gains were not replicated in handwritten tasks, suggesting this was a compensatory therapeutic approach. What are the clinical implications of this work?: AT programs such as this may present speech and language therapists with a practical, pragmatic adjunct to writing or typing therapy, particularly for clients with chronic, intractable impairments for whom remediatory therapy may have a low chance of success. [ABSTRACT FROM AUTHOR]

Background: In order to conduct research that is meaningful to speech and language therapy services and their patients, it is often desirable to conduct the research within routine clinical services. This can require considerable time and commitment from speech and language therapists (SLTs). It is therefore important to understand the impact that such participation in research can have. Aims: To explore the impact of research participation in the Big CACTUS study of self‐managed computerized aphasia therapy conducted in 21 UK NHS speech and language therapy departments. Methods & Procedures: An online survey was sent to SLTs who took the lead role for the study at their NHS Trust to evaluate the impact of study participation in three domains: capacity‐building, research development and health services. The questionnaire, based on the VICTOR framework for evaluating research impact, included Likert scale statements and closed and open‐ended questions. The results from open‐ended questions were coded and analysed using framework analysis in NVivo 12 and the data from closed questions were analysed descriptively. Outcomes & Results: A total of 12 SLTs returned the survey. Nine codes were identified from open‐ended questions and 20 predefined from the literature. Analysis of the responses demonstrated the perceived impact including improvements in practices and access to therapy, investments in infrastructure, increased SLT profile, and impact on research culture among SLTs. The usefulness of the intervention during the COVID‐19 pandemic was also highlighted. Conclusions & Implications: The results suggest participation in Big CACTUS has resulted in improvements in patient care and SLT research capacity and culture in speech and language therapy departments. What This Paper Adds: What is already known on the subject: Practice‐based research is encouraged to assist with the clinical relevance of the research findings. Participation in research can be seen as an activity that is additional to the core business of patient care and it can be difficult to secure time to participate or conduct research in clinical settings. Impact evaluation initiatives of individual trials facilitate early identification of benefits beyond the trial. What this paper adds to existing knowledge: This study describes specific examples of the impact on services, staff and patients from SLT participation and leadership in the Big CACTUS speech and language therapy trial in clinical settings. What are the potential or actual clinical implications of this study?: Clinical services participating in research may benefit from improved clinical care for patients both during and after the study, an improved professional reputation, and increased research capacity and culture within the clinical settings. [ABSTRACT FROM AUTHOR]

Background: Speech and language therapists and nurses need to work together to keep patients with swallowing difficulties safe throughout their acute stroke admission. Speech and language therapists make recommendations for safe swallowing following assessment and nurses put recommendations into practice and monitor how patients cope. There has been little research into the everyday realities of ongoing swallow safety management by these two disciplines. Patient safety research in other fields of healthcare indicates that safety can be enhanced through understanding the cultural context in which risk decisions are made. Aims: To generate new understanding for how speech and language therapists (SLTs) and nurses share information for ongoing management of swallows safety on stroke units. Methods & Procedures: An ethnographic methodology involving 40 weeks of fieldwork on three stroke wards in England between 2015 and 2017. Fieldwork observation (357 h) and interviews with 43 members of SLT and nursing staff. Observational and interview data were analysed iteratively using techniques from the constant comparative method to create a thematically organized explanation. Outcomes & Results: An explanation for how disciplinary differences in time and space influenced how SLT and nursing staff shared information for ongoing management of swallow safety, based around three themes: (1) SLTs and nurses were aligned in concern for swallow safety across all information‐sharing routes; however, (2) ambiguity was introduced by the need for the information contained in swallowing recommendations to travel across time, creating dilemmas for nurses. Patients could improve or deteriorate after recommendations were made and nurses had competing demands on their time. Ambiguity had consequences for (3) critical incident reporting and relationships. SLTs experienced dilemmas over how to act when recommendations were not followed. Conclusions & Implications: This study provides new understanding for patient safety dilemmas associated with the enactment and oversight of swallowing recommendations in context, on stroke wards. Findings can support SLTs and nurses to explore together how information for ongoing dysphagia management can be safely implemented within ward realities and kept up to date. This could include considering nursing capacity to act when SLTs are not there, mealtime staffing and SLT 7‐day working. Together they can review their understanding of risk and preferred local and formal routes for learning from it. What this paper adds: What is already known on the subject: It is known that information to keep swallowing safe is shared through swallowing recommendations, which are understood to involve a balance of risks between optimizing the safety of the swallow mechanism and maintaining physiological and emotional health. There is increasing appreciation from patient safety research, of the importance of understanding the context in which hospital staff make decisions about risk and patient safety. What this paper adds to existing knowledge: The paper provides new empirical understanding for the complexities of risk management associated with SLT and nursing interactions and roles with respect to ongoing swallow safety. What are the potential or actual clinical implications of this work?: Findings can underpin SLT and nurse discussion about how swallow safety could be improved in their own settings. [ABSTRACT FROM AUTHOR]

Background and Aims: Long‐acting injectable buprenorphine (LAIB) is a new treatment for opioid use disorder that is generating positive outcomes. Negative effects are typically mild and transient, but can occasionally be serious, resulting in treatment discontinuation/non‐adherence. This paper aims to analyse patients' accounts of how they felt during the first 72 h after initiating LAIB. Methods: Semi‐structured interviews were conducted (June 2021–March 2022) with 26 people (18 males and 8 females) who had started LAIB within the previous 72 h. Participants were recruited from treatment services in England and Wales and were interviewed by telephone using a topic guide. Interviews were audio‐recorded, transcribed and coded. The concepts of embodiment and embodied cognition framed the analyses. Data on participants' substance use, initiation onto LAIB and feelings were tabulated. Next, participants' accounts of how they felt were analysed following the stages of Iterative Categorization. Results: Participants reported complex combinations of changing negative and positive feelings. Bodily experiences included withdrawal symptoms, poor sleep, injection‐site pain/soreness, lethargy and heightened senses inducing nausea ('distressed bodies'), but also enhanced somatic wellbeing, improved sleep, better skin, increased appetite, reduced constipation and heightened senses inducing pleasure ('returning body functions'). Cognitive responses included anxiety, uncertainties and low mood/depression ('the mind in crisis') and improved mood, greater positivity and reduced craving ('feeling psychologically better'). Whereas most negative effects reported are widely recognized, the early benefits of treatment described are less well‐documented and may be an overlooked distinctive feature of LAIB. Conclusions: During the first 72 h after initiating long‐acting injectable buprenorphine, new patients report experiencing a range of interconnected positive and negative short‐term effects. Providing new patients with information about the range and nature of these effects can prepare them for what to expect and help them manage feelings and reduce anxiety. In turn, this may increase medication adherence. [ABSTRACT FROM AUTHOR]

This commentary paper critically discusses the recent debate paper by Petry et al. (2014) that argued there was now an international consensus for assessing Internet Gaming Disorder (IGD). Our collective opinions vary considerably regarding many different aspects of online gaming. However, we contend that the paper by Petry and colleagues does not provide a true and representative international community of researchers in this area. This paper critically discusses and provides commentary on (i) the representativeness of the international group that wrote the ‘ consensus ’ paper, and (ii) each of the IGD criteria. The paper also includes a brief discussion on initiatives that could be taken to move the field towards consensus. It is hoped that this paper will foster debate in the IGD field and lead to improved theory, better methodologically designed studies, and more robust empirical evidence as regards problematic gaming and its psychosocial consequences and impact. [ABSTRACT FROM AUTHOR]

Background: Person‐centred services are inherently related to patients/caregivers' needs. However, the extent to which dysphagia services within Singapore meet consumer needs is largely unknown. Involving patients/caregivers in service evaluation/redesign deepens the understanding of consumer needs. This process also increases the success of implementing service enhancements through relevant and meaningful change. Aim: This study aimed to identify aspects of dysphagia services, within acute and subacute settings in Singapore, perceived as highly important and easy to change by patients/caregivers. Methods & Procedures: Using concept mapping methodology, 5 patients and 11 caregivers reflected on their experiences of receiving dysphagia care and proposed 59 unique suggestions to improve dysphagia services within Singapore. Then, each individual sorted the suggestions into groups based on similarity and rated each statement for its perceived importance and changeability for service enhancement. Data were analysed using multidimensional scaling, hierarchical cluster analysis, and bivariate analysis to generate clusters of conceptually similar suggestions and a prioritised list of suggestions for service enhancement. Results: Twelve clusters were identified, with most rated as more important than changeable for service improvement. Participants prioritised 23 (39%) of the suggestions as highly important and easy to change, and these focused on ensuring effective communication among consumers and healthcare team, enhancing patients and carers' access to support at home, increasing patients and carers' access to educational resources, and improving service quality and access through technology. Conclusion: These findings provide future directions on how to develop and implement dysphagia services in Singapore to better meet the needs of patients/caregivers. WHAT THIS PAPER ADDS: What is already known on this subject: Little is known about patients and caregivers' experiences and expectations of receiving dysphagia services in Singapore. Consulting them in service review and improvement deepens understanding of their needs and increases the success of implementing meaningful service enhancements. What this study adds to existing knowledge: This study shows that patients and caregivers in Singapore identified a wide range of dysphagia service issues and prioritised a list of suggestions for service improvement. They prioritised four key areas for service optimisation: ensuring effective communication among consumers and healthcare team, enhancing patients and carers' access to support at home, increasing patients and carers' access to educational resources, and improving service quality and access through technology. What are the clinical implications of this work?: This research highlights the importance of considering the consumers' perspectives in service review and redesign. Patients and caregivers in Singapore identified four prioritised areas for service enhancements. These findings provide future directions on how to develop and implement dysphagia services in Singapore to better meet the needs of patients and caregivers. [ABSTRACT FROM AUTHOR]

Background: Studies suggest swallow intervention programmes that incorporate visual biofeedback and motor programming principles can improve swallowing and quality of life for people with idiopathic Parkinson's disease (IPD) and dysphagia. Few studies have examined outcomes using instrumentation. Aims: Using fibreoptic endoscopic examination of swallowing (FEES), this study examines the effectiveness of a neurorehabilitation intervention involving biofeedback via surface electromyography (sEMG) to improve swallowing in people with IPD, and to explore the feasibility of the intervention approach. Methods & Procedures: We recruited 12 participants with IPD and dysphagia. A total of 10 completed the study. Intervention was delivered for 1 h per day, 5 days per week, for 4 weeks (20 h). Swallowing tasks using sEMG biofeedback incorporated principles of motor learning and neuroplasticity. Instrumental and non‐instrumental assessment, including quality‐of‐life measures carried out at four different time points (two pre‐treatment and two post‐treatment). The final assessment was at 3 months post‐intervention. Outcome & Results: Statistically significant improvement (p < 0.05) in oral intake methods (95% confidence interval (CI) = 4.70–5.50) and in pharyngeal residue from saliva (95% CI = 2.14–3.15) and solids (95% CI = 2.4–3.5) post‐intervention were confirmed using FEES with improvements at 3 months. The intervention protocol was well tolerated. Participants reported positive change in saliva control and duration of mealtimes as well as unanticipated improvements in voice and cognitive attention. Conclusions & Implications: An intensive neurorehabilitation with biofeedback shows positive effects in improving swallow function in IPD. This protocol is feasible with amendments to inform a larger clinical trial. What this paper adds: What is already known on the subject: Biofeedback has positive effects on increasing swallowing function and quality of life in people with IPD and dysphagia. sEMG is the most common method used to deliver swallowing biofeedback in this population. The quality of the evidence on the intervention, based on findings from a recent systematic review, is low. Included studies in this review were heterogeneous in terms of type and frequency of biofeedback, study design and outcome measures. The majority of outcome measures were subjective and higher quality studies to examine the efficacy of biofeedback using sEMG are needed. What this study adds: Recognizing the limitations of earlier studies, this within‐subject feasibility study examined the efficacy and effectiveness of an intensive biofeedback intervention using sEMG in a sample of people with dysphagia and IPD. Valid and reliable outcome measures were used and repeated after a 3‐month period. The feasibility of the methodological approach was also tested and a qualitative component was included in the study. Positive findings were evident. Qualitative information added new perspectives and provided direction for new outcomes to be included in future studies. This study helps to inform further research trials as well as clinical practice. Clinical implications of this study: This intensive intervention using principles of neuroplasticity and motor programming with sEMG biofeedback led not only to positive swallowing outcomes but also to unexpected benefits such as improved voice production and general attention skills. No adverse events were reported. Improvement in function was retained at 3 months post‐intervention. Despite the small sample size, participants described the benefits of the treatment, and enjoyed sEMG biofeedback tasks, especially using an sEMG game mode. This suggests that intensive biofeedback not only improved swallowing but also was acceptable to these participants. This intensive protocol has merit and is worth considering further in clinical practice. [ABSTRACT FROM AUTHOR]

Background: Speech disorders in children with a cleft palate with or without a cleft lip (CP±L) are complex given the magnitude of influencing factors. Providing intervention to eliminate these speech errors is often challenging. Speech–language pathologists (SLPs) might have negative perceptions of the treatment of children with a CP±L. Aims: To explore how community SLPs perceive and experience the provision of speech intervention to children with a CP±L. Methods & Procedures: A total of 18 female community SLPs, aged between 23 and 62 years, were included in this study. Semi‐structured interviews were conducted. The interviews were analysed using an inductive thematic approach aiming to identify themes driven by the data. Trustworthiness of the data was achieved by including researcher triangulation (involving three researchers with different research backgrounds) and deviant case analysis of two cases. Outcomes & Results: Initial responses demonstrated that the community SLPs were excited and enthusiastic to treat children with a CP±L. Expanding on these initial reports, however, they revealed that their excitement turned into professional self‐doubt and insecurity when confronted with the treatment challenges inherent with this population. To cope with this self‐doubt, they outlined several responsibilities for the cleft team SLPs. They expressed a strong desire to receive confirmation and approval on their treatment practices from more experienced SLPs (i.e., the cleft team SLPs). Their perceptions were dominated by a polarized thinking pattern. Treatment approaches were divided in categories as 'right' or 'wrong' and 'good' or 'bad'. Conclusions & Implications: The community SLPs are lacking professional confidence when treating children with a CP±L. They put themselves in a subordinate position towards the cleft team SLPs and expect the latter to provide ready‐made answers to problems and questions. This expectation can perhaps be explained by their fear of making mistakes during therapy preventing treatment progress. If they handle in accordance with the experts' advice, they cannot blame themselves in cases where no treatment progress is seen. Educational programmes need to pay more attention to gaining professional confidence (in the search for the most optimal treatment approach for each individual patient) rather than merely focusing on competency‐based learning tools. What this paper adds: What is already known on the subject: Speech disorders in children with a cleft palate with or without a cleft lip (CP±L) are complex given the magnitude of influencing factors. Providing intervention to eliminate these speech errors is often challenging. What this paper adds to existing knowledge: This study explored how community SLPs' perceive and experience the provision of speech intervention to children with a CP±L. The perceptions of community SLPs are dominated by a polarized thinking pattern. Treatment approaches are divided into categories as "right" or "wrong" and "good" or "bad". They lack professional confidence when they treat children with a CP±L. The community SLPs put themselves in a subordinate position towards the cleft team SLPs and expect the latter to provide ready‐made answers to problems and questions. What are the potential or actual clinical implications of this work?: Educational programs in speech‐language pathology need to pay more attention to gaining professional confidence rather than merely focusing on competency‐based learning tools. [ABSTRACT FROM AUTHOR]

In this paper, I discuss the question of partiality and impartiality in the application of triage. Triage is a process in medical research which recommends that patients should be sorted for treatment according to the degree or severity of their injury. In employing the triage protocol, however, the question of partiality arises because socially vulnerable groups will be neglected since there is the likelihood that the social determinants of a patient's health may diminish her chance of survival. As a process that is based on the severity of a patient's injury, triage will be unfair, and hence negatively partial, to socially vulnerable people. Thus, I aim in this paper to show that the triage protocol fails as an impartial evaluative process because its only aim is to maximize survivability. I contend that: (i) triage would lead to the neglect of the social condition of patients or victims, and (ii) it will only serve the utilitarian purpose of maximization of outcomes which may not be justified in some cases. [ABSTRACT FROM AUTHOR]

Aim To introduce dental hygienists ( DHs) in the UK to the principles of research through a practice-based product evaluation programme. Methods The programme consisted of an initial training and orientation day with presentations on evidence-based practice, research methods and the structure of research papers. The programme and its aims were explained in detail, and participants were briefed on the methods to be used. Participants then recruited seven to ten patients from their practices (offices), carried out a baseline assessment of: plaque, gingival health, calculus and staining at anterior teeth, and gave the patients a questionnaire asking about their teeth and then provided a 3-month supply of a test toothpaste. About 10 weeks later, a follow-up assessment of the same variables was performed and the questionnaire was repeated. A second training day followed during which the DHs provided feedback of their experiences and received training in literature searching and critical appraisal of literature including interpretation of results. Results Sixty-five DHs attended the first training day; 31 were able to recruit sufficient patients and attend the second training day. The DHs recruited 168 patients who received baseline and follow-up assessments. All the variables improved overall. Feedback from the DHs was very positive, and patients expressed delight with the care they had received. Conclusions Qualitative feedback for participating DHs suggests the programme met its aim and could be used in the future as a mechanism for helping DHs who want to increase their understanding of research methodology. [ABSTRACT FROM AUTHOR]

Objectives: SlowMo therapy is a pioneering blended digital therapy for paranoia, augmenting face‐to‐face therapy with an interactive 'webapp' and a mobile app. A recent large‐scale trial demonstrated small–moderate effects on paranoia alongside improvements in self‐esteem, worry, well‐being and quality of life. This paper provides a comprehensive account of therapy personalisation within this targeted approach. Design: Case examples illustrate therapy delivery and descriptive data are presented on personalised thought content. Method: Thought content was extracted from the webapp (n = 140 participants) and coded using newly devised categories: Worries: (1) Persecutory, (2) Negative social evaluation, (3) Negative self‐concept, (4) Loss/life stresses, (5) Sensory‐perceptual experiences and (6) Health anxieties. Safer thoughts: (1) Safer alternative (specific alternatives to worries), (2) Second‐wave (generalised) coping, (3) Positive self‐concept, (4) Positive activities and (5) Third‐wave (mindfulness‐based) coping. Data on therapy fidelity are also presented. Results: Worries: 'Persecutory' (92.9% of people) and 'Negative social evaluation' (74.3%) were most common. 'General worries/ life stresses' (31.4%) and 'Negative self‐concept' (22.1%) were present in a significant minority; 'Health anxieties' (10%) and 'Sensory‐perceptual' (10%) were less common. Safer thoughts: 'Second‐wave (general) coping' (85%), 'Safer alternatives' (76.4%), 'Positive self‐concept' (65.7%) and 'Positive activities' (64.3%) were common with 'Third‐wave' (mindfulness) coping observed for 30%. Fidelity: Only three therapy withdrawals were therapy related. Session adherence was excellent (mean = 15.2/16; SD = 0.9). Behavioural work was conducted with 71% of people (119/168). Conclusion: SlowMo therapy delivers a targeted yet personalised approach. Potential mechanisms of action extend beyond reasoning. Implications for cognitive models of paranoia and causal interventionist approaches are discussed. [ABSTRACT FROM AUTHOR]

Objective This paper contributes to the literature on relocation for specialist care by providing findings on specific issues impacting on rural farmers and property owners who have to travel to the metropolitan area for specialist care for a haematological malignancy. Design and setting This paper uses descriptive qualitative research based on 45 interviews with patients with haematology in Queensland. The interviews were audio-recorded, transcribed verbatim, coded and thematically analysed. Results In addition to issues of distance, farmers and rural property owners who have to relocate for specialist care must deal with problems associated with the lack of opportunity to take absence from the property because of the inescapable pressure of daily farm and property responsibilities and the high cost of, or lack of opportunity to, outsource daily maintenance. Further concerns include the cost of relocation in the context of continuing drought, serious problems sustaining the travel and time away required, and the lack of choice for some but to deal with treatment alone. Conclusion In recent years there has been considerable progress with regard to overcoming the distance barrier for rural and remote patients with cancer through innovative clinical models using technology and telemedicine. However, there has been limited uptake of such models for patients with haematology. The present findings indicate that from the perspective of rural farmers and property owners there are important reasons why the use of innovative strategies should be fostered and expanded. [ABSTRACT FROM AUTHOR]

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end‐of‐life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end‐of‐life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients’ comfort and dignity were deemed most at stake and therefore commanded nurses’ primary attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end‐of‐life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients’ subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end‐of‐life care. [ABSTRACT FROM AUTHOR]

Objective: The aim of this work within OptTEST by HiE has been to demonstrate the role of legal and regulatory barriers in hindering access to HIV testing, treatment and care across Europe and to produce tools to help dismantle them. Methods: An online survey to assess country‐specific data on legal and regulatory barriers distributed widely across the WHO Europe region. Literature reviews conducted in January‐October 2015 in English, in November 2015 in Russian, and updated in April 2017. Semi‐structured interviews were conducted with 25 key actors within the HIV field to feed into case studies and tip sheets on how to dismantle legal and regulatory barriers. Results: More than 160 individuals and organisations from 49 countries across the WHO European region provided responses which were analysed and cross checked with other data sources and a searchable database produced (legalbarriers.peoplewithhiveurope.org). The conducted literature reviews yielded 88 papers and reports which identify legal and regulatory barriers to key populations’ access to HV testing and care. Based on the interviews with key actors, ranging from PLHIV activists to government officials, on lessons‐learned, a series of tip sheets and ten case studies were written‐up intended to inform and inspire the HIV community to address and overcome existing barriers (opttest.eu/Tools). Conclusion: While some of the barriers identified may require major changes to wider health systems, or long term legal reform, many are open to a simple change in regulations or custom and practice. We have the tools. Why can't we finish the job? [ABSTRACT FROM AUTHOR]

Background: Subjective well‐being (SWB) and quality of life (QOL) are intricately related constructs. Recent research shows both constructs share some facets, but are distinct entities. It is unclear, both internationally and in the Netherlands, if and how SLTs address SWB in clinical practice. The current study was set up to explore Dutch SLTs' perceptions of SWB in relation to the management of people with aphasia. Aims: To describe how Dutch SLTs, working with people with aphasia in a private practice or a healthcare setting, address patient's SWB during diagnosis and treatment, and to identify barriers and facilitators they experience when addressing SWB. Methods & Procedures: A qualitative research design with a phenomenological approach was used. SLTs from private practices and healthcare settings were invited to participate in individual interviews and a focus group. The data were analysed thematically using a combination of inductive and deductive methods. Outcomes & Results: Eight SLTs participated in the study. The SLTs' experiences were captured in four themes that emerged from the data: (1) SWB is a multifaceted concept and depends on patient‐specific factors: premorbid factors, life priorities and time post‐stroke; (2) SLTs experience more responsibility for patients' SWB than their profession allows; (3) collaboration between SLTs and patients, patients' network and other healthcare professionals is required to address SWB during diagnosis and treatment; and (4) misinterpretations are inevitable when SLTs or the patients' network address patients' SWB. Conclusions & Implications: The results showed that SLTs feel responsible for addressing SWB in the management of people with aphasia. Their perception of the concept of SWB is similar to the definition used in the literature and is multifaceted. They feel responsible for the part of SWB that is related to communicative functioning, but less so for the more heuristic aspects of SWB. This is related to their experienced limitation of influence on SWB, which for some leaves them feeling out of depth and uncertain about boundaries between professionals. Addressing SWB in a multidisciplinary team is therefore considered important in order to adequately and fully capture someone's SWB and reduce to clinicians' experienced burden and responsibility. What this paper addsWhat is already known on this subjectRecent studies suggest that quality of life measures may lack facets related to subjective well‐being (SWB). Aphasia is likely to impact on SWB of a stroke survivor, but it is unclear if and how SWB is addressed by speech and language therapists in diagnosis, and treatment of Dutch PWA.What this study addsThis study provides insight into the operationalization of SWB in Dutch clinical practice, including barriers SLTs experience when addressing SWB.Clinical implications of this studyMonitoring and influencing SWB of people with aphasia is a complex process, that SLTs consider only possible in multi‐disciplinary teams. Clear guidelines on roles and responsibilities between various disciplines involved are necessary to improve care for people with aphasia. [ABSTRACT FROM AUTHOR]

Background: CBT is an effective treatment for depression, but access varies across the United Kingdom. Online CBT increases access. The INTERACT platform was designed to support patient engagement in CBT, enabling therapists to deliver high‐intensity CBT via typed instant messaging and allowing patients and therapists access to an integrated online library of resources during and between sessions. Methods: The INTERACT trial aimed to evaluate this integrated approach to delivering CBT for primary care patients with depression. A nested qualitative study was conducted within the trial. Interviews were conducted with 20 patients who received the intervention, 9 therapists who delivered it and 3 therapist supervisors. Data were analysed using thematic analysis. Results: The combination of receiving support from a therapist and having access to integrated online CBT resources enabled patients to better manage their depression. Platform benefits included the opportunity to review transcripts to clarify how to complete homework tasks and track progress in managing their depression. The typing process allowed reflection and a focused discussion. However, less could be covered than during an in‐person session, which reduced therapists' expectations around goal setting. Patients who did not complete therapy struggled with the typing and found the CBT approach too demanding. Conclusion: Findings highlight the importance of establishing patient and therapist goals and expectations about what can be achieved in CBT mediated by typing. Some patients are comfortable communicating via typing and are motivated to utilise online resources in between sessions. Exploring the benefits and challenges of typed CBT with patients will enable them to make an informed choice about referral for this novel approach to therapy. Patient or Public Contribution: Patients, service users and members of the public were involved in the study design and management. Substantial pilot work gathered stakeholder feedback and informed the design of the intervention, before undertaking the RCT. Coauthor P.L. is a service user representative co‐applicant and member of the management group responsible for developing the intervention and the trial. Two PPI members sit on the Independent Steering Committee. PPI members provided valuable feedback on the study resources and documents. [ABSTRACT FROM AUTHOR]

Background and Aims: Federal, state and local US governments have sought interventions to reduce deaths due to opioid overdoses by increasing the availability of naloxone. The Affordable Care Act (ACA) expanded Medicaid coverage to low‐income, childless adults, potentially giving this group financial access to naloxone. The aims of this paper are: (1) to describe the changes in the amount of Medicaid‐covered naloxone used between 2009 and 2016 and (2) to quantify the differential change in the amount of dispensed naloxone between states that expanded their Medicaid programs and states that did not. Design A quasi‐experimental approach based on states' ongoing choice to expand their Medicaid program to all adults with incomes between 100 and 138% of the federal poverty line (FPL), starting in 2014. As of 2018, 37 states had expanded and 14 states had not. Estimation of the policy impact relies on a difference‐in‐difference method. Setting: US state Medicaid programs. Participants and measurements: Data are from the Medicaid Drug Rebate Program and include all dispensed prescriptions of naloxone through the Medicaid program. State/quarters with fewer than 10 prescriptions are suppressed; n = 1632. Findings Prior to Medicaid expansion, the number of Medicaid‐covered naloxone prescriptions was very similar in expansion and non‐expansion states. On average, states that expanded Medicaid had 78.2 (95% confidence interval = 16.0–140.3, P = 0.02) more prescriptions per year for naloxone compared with states that did not expand Medicaid coverage, a nearly 10 increase over the pre‐expansion years. Medicaid expansion contributed to this growth in Medicaid‐covered naloxone more than other state‐level naloxone policies. Conclusions: Medicaid accounts for approximately a quarter of naloxone sales. Medicaid expansion generated 8.3% of the growth in naloxone units from 2009 to 2016, holding other factors constant. [ABSTRACT FROM AUTHOR]

The literature on causal effect estimation tends to focus on the population mean estimand, which is less informative as medical treatments are becoming more personalized and there is increasing awareness that subpopulations of individuals may experience a group-specific effect that differs from the population average. In fact, it is possible that there is underlying systematic effect heterogeneity that is obscured by focusing on the population mean estimand. In this context, understanding which covariates contribute to this treatment effect heterogeneity (TEH) and how these covariates determine the differential treatment effect (TE) is an important consideration. Towards such an understanding, this paper briefly reviews three approaches used in making causal inferences and conducts a simulation study to compare these approaches according to their performance in an exploratory evaluation of TEH when the heterogeneous subgroups are not known a priori. Performance metrics include the detection of any heterogeneity, the identification and characterization of heterogeneous subgroups, and unconfounded estimation of the TE within subgroups. The methods are then deployed in a comparative effectiveness evaluation of drug-eluting versus bare-metal stents among 54 099 Medicare beneficiaries in the continental United States admitted to a hospital with acute myocardial infarction in 2008. [ABSTRACT FROM AUTHOR]

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Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The prescribing of high‐cost cancer medicines at the end of life has become a focus of criticism, due primarily to concerns about the safety, efficacy and cost‐effectiveness of these medicines in this clinical context. In response to these concerns, a number of interventions have been proposed – frequently focused on improving physician–patient communication at the end of life. Underpinning these strategies is the assumption that the prescribing of high‐cost cancer medicines at the end of life is primarily the result of poor communication on the part of cancer physicians. In this paper, we explore the factors perceived by cancer physicians to be driving the use of high‐cost cancer medicines at the end of life. Drawing on semi‐structured interviews with 16 Australian oncologists and haematologists, we demonstrate that these physicians believe that the use of high‐cost medicines at the end of life is driven by multiple factors – including individual, interpersonal, socio‐cultural and public policy influences. We conclude that these factors, and their interactions, need to be taken into account in the development of public policy and clinical interventions to address the use of high‐cost medicines at the end of life. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Introduction: Percutaneous transluminal angioplasty (PTA) and surgical bypass (BYP) are treatment options for symptomatic peripheral arterial disease (PAD). PTA and BYP have different clinical outcomes and cost implications. This paper aims to compare hospital-related costs of PTA and BYP for PAD of the lower limbs in an Australian health service.Methods: A retrospective cost analysis using clinical and financial data from an urban, tertiary hospital was performed. Patient cohorts were matched to existing published studies and 3-year findings were calculated. Outcomes measured were mean initial admission cost; mean bed stay; mean complication rate; mean cost of re-intervention at 12 months and extrapolated mean cost at 3 years.Results: The mean total admission costs for PTA compared to BYP were $8758 vs. $27,849 (P < 0.001). Patients undergoing BYP were admitted for 10.25 vs. 3.77 nights (P < 0.001). The complication rate was greater in the BYP group for infection only. Re-intervention was required by 13% of the PTA group and 16% of the BYP group, at a mean cost of $11,798 and $14,728, respectively (P = 0.453). The extrapolated total mean cost at 3 years was higher in the BYP group for patients with both intermittent claudication ($26,764 vs. $11,402) and critical limb ischaemia ($27,719 vs. $12,655).Conclusions: In this cohort, PTA is a favourable alternative to BYP for PAD of the lower limbs as it is less costly, does not result in a greater re-intervention rate at 1 year and has been previously demonstrated to have comparable clinical outcomes. Given the limitations of this retrospective analysis, a prospective cost-effectiveness analysis is recommended. [ABSTRACT FROM AUTHOR]

Foot ulceration is a devastating and costly consequence of diabetes. Hyperbaric oxygen therapy is recognised as an adjunctive therapy to treat diabetes‐related foot ulceration, yet uptake is low. Semi‐structured interviews were conducted with 16 podiatrists who manage patients with foot ulcers related to diabetes to explore their perceptions of, and the barriers/facilitators to, referral for hyperbaric oxygen. Podiatrists cited logistical issues such as location of facilities as well as poor communication pathways, lack of delegation and lack of follow up when patients presented for hyperbaric treatment. In general, podiatrists had an understanding of the premise of hyperbaric oxygen therapy and evidence to support its use but could only provide very limited citations of key papers and guidelines to support their position. Podiatrists stated that they felt a patient was lost from their care when referred for hyperbaric oxygen and that aftercare might not be adequate. Improved referral and delegation pathways for patients presenting for hyperbaric oxygen, as well as the provision of easily accessible evidence to support this therapy, could help to increase podiatrists’ confidence in deciding whether or not to recommend their patients for hyperbaric oxygen therapy. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Introduction and Aims: Take-home naloxone (THN) programs commenced in Australia in 2012 in the Australian Capital Territory and programs now operate in five Australian jurisdictions. The purpose of this paper is to record the progress of THN programs in Australia, to provide a resource for others wanting to start THN projects, and provide a tool for policy makers and others considering expansion of THN programs in this country and elsewhere.Design and Methods: Key stakeholders with principal responsibility for identified THN programs operating in Australia provided descriptions of program development, implementation and characteristics. Short summaries of known THN programs from each jurisdiction are provided along with a table detailing program characteristics and outcomes.Results: Data collected across current Australian THN programs suggest that to date over 2500 Australians at risk of overdose have been trained and provided naloxone. Evaluation data from four programs recorded 146 overdose reversals involving naloxone that was given by THN participants.Discussion and Conclusions: Peer drug user groups currently play a central role in the development, delivery and scale-up of THN in Australia. Health professionals who work with people who use illicit opioids are increasingly taking part as alcohol and other drug-related health agencies have recognised the opportunity for THN provision through interactions with their clients. Australia has made rapid progress in removing regulatory barriers to naloxone since the initiation of the first THN program in 2012. However, logistical and economic barriers remain and further work is needed to expand access to this life-saving medication. [ABSTRACT FROM AUTHOR]

Copyright of Developmental Medicine & Child Neurology is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Introduction: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment‐related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. Methods: A qualitative design was used with semi‐structured interviews (online or in‐person) with participants recruited through audiology services and nonclinical services, such as lip‐reading classes. Forty‐six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. Results: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). Conclusions: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld‐led care, family‐centred care and peer support to build support for those with hearing loss. Patient or Public Contribution: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co‐authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript. [ABSTRACT FROM AUTHOR]

Background Psychological interventions for bipolar disorders typically produce mixed outcomes and modest effects. The need for a more effective intervention prompted the development of a new cognitive behavioural therapy, based on an integrative cognitive model ('Think Effectively About Mood Swings' [TEAMS] therapy). Unlike previous interventions, TEAMS addresses current symptoms and comorbidities, and helps clients achieve long-term goals. A pilot randomized controlled trial (the TEAMS trial) of the therapy has recently concluded. This study explored participants' experiences of TEAMS, recommendations for improvement and experiences of useful changes post-therapy. Methods Fourteen TEAMS therapy participants took part in semi-structured interviews. Their accounts were analysed using interpretative thematic analysis. Two researchers coded the dataset independently. Member checks were conducted of the preliminary themes. Results Two overarching themes; 'useful elements of therapy' and 'changes from therapy' encompassed 12 emerging subthemes. Participants appreciated having opportunities to talk and described the therapy as person-centred and delivered by caring, approachable and skilled therapists. Some recommended more sessions than the 16 provided. Helpful therapeutic techniques were reported to be, normalization about moods, methods to increase understanding of moods, relapse-prevention, reappraisal techniques and metaphors. However, some did not find therapeutic techniques helpful. Post-therapy, many reported changes in managing mood swings more effectively and in their thinking (although some participants reported changes in neither). Many described increased acceptance of themselves and of having bipolar disorder, increased productivity and reduced anxiety in social situations. Conclusions The present study evaluates participants' therapy experiences in detail, including aspects of therapy viewed as helpful, and meaningful post-therapy outcomes. Copyright © 2016 John Wiley & Sons, Ltd. Key Practitioner Message This is the first paper to qualitatively explore people's experiences of individual psychotherapy for bipolar disorders. It highlights elements of psychotherapy described as particularly helpful or unhelpful and the clinical changes viewed as most impactful., Participants reported benefitting in a number of ways from TEAMS therapy. They valued learning to reappraise and problem-solve situations and manage moods., Participants identified TEAMS techniques as helpful, such as exploring advantages and disadvantages of moods, and building healthy self-states. [ABSTRACT FROM AUTHOR]

Generalized estimating equations (GEE) is a general statistical method to fit marginal models for longitudinal data in biomedical studies. The variance-covariance matrix of the regression parameter coefficients is usually estimated by a robust "sandwich" variance estimator, which does not perform satisfactorily when the sample size is small. To reduce the downward bias and improve the efficiency, several modified variance estimators have been proposed for bias-correction or efficiency improvement. In this paper, we provide a comprehensive review on recent developments of modified variance estimators and compare their small-sample performance theoretically and numerically through simulation and real data examples. In particular, Wald tests and t-tests based on different variance estimators are used for hypothesis testing, and the guideline on appropriate sample sizes for each estimator is provided for preserving type I error in general cases based on numerical results. Moreover, we develop a user-friendly R package "geesmv" incorporating all of these variance estimators for public usage in practice. [ABSTRACT FROM AUTHOR]

ABSTRACT Background The IO route is an established method of obtaining vascular access in children in acute and emergency situations and is now increasingly being used in adults as an alternative to intravenous access, yet a paucity of evidence exists regarding its use, effectiveness and implementation. Aim and objectives The aim of this literature review is to present a detailed investigation critiquing contemporary practices of intraosseous (IO) vascular access in adult patients. Specific objectives identified led to the exploration of clinical contexts, IO device/s and anatomical sites; education and training requirements; implications and recommendations for emergency health care practice and any requirements for further research. Search strategies An exploratory literature review was undertaken in acknowledgement of the broad and complex nature of the project aim. Five electronic search engines were examined iteratively from June 2013 to February 2014. The search terms were 'intraosseous' and 'adult' which were purposely limited because of the exploratory nature of the review. Studies that met the inclusion criteria of primary research articles with an adult focus were included. Research with a paediatric focus was excluded. Secondary research, reviews, case reports, editorials and opinion papers were excluded. Conclusion IO vascular access is considered an alternative intravascular access route although debate considering the preferred anatomical site is ongoing. Documented practices are only established in pre-hospital and specialist emergency department settings; however, variety exists in policy and actual practice. Achieving insertion competence is relatively uncomplicated following minimal preparation although ongoing skill maintenance is less clear. IO vascular access is associated with minimal complications although pain is a significant issue for the conscious patient especially during fluid administration. Relevance to clinical practice The IO route is clearly a valuable alternative to problematic intravascular access. However, further research, including cost effectiveness reviews, is required to gain clarity of whole acute care approaches. [ABSTRACT FROM AUTHOR]

The present paper reports on a 5-year follow-up of a randomized reading intervention in grade 3 in Sweden. An intervention group (n = 57) received daily training for 12 weeks in phoneme/grapheme mapping, reading comprehension and reading speed, whereas a control group (n = 55) participated in ordinary classroom activities. The main aim was to investigate if there were remaining effects of the intervention on reading-related skills. Previous analyses showed that the intervention group performed significantly better than the control group on spelling, reading speed, reading comprehension and phoneme awareness at the immediate post-test with sustained effects 1 year later. Results from the 5-year follow-up show that the only significant difference between the intervention (n = 47) and the control group (n = 37) was on word decoding. There was also a significant interaction effect of group assignment and initial word decoding, in the way that the lowest-performing students benefitted the most from the intervention. Another aim was to examine if the children identified in a screening (n = 2212) as poor readers in grade 2 still performed worse than typical readers. The analyses showed that the typically developing students (n = 66) outperformed the students identified as poor readers in grade 2 on working memory, spelling, reading comprehension and word decoding. Copyright © 2016 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Background and objective: End‐stage renal disease (ESRD) affects a multitude of aspects in the patient's daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health‐care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients' and health‐care professionals' perspectives. Design: This explorative study employed qualitative interviews and content analysis. Setting and participants: Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results: In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of one's own health‐care treatment and/or self‐care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients' performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions: Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed. [ABSTRACT FROM AUTHOR]

Background: The most common instruments used for extracorporeal photopheresis (ECP) treatment in the United States are the UVAR XTS and the CELLEX devices (Therakos, West Chester, PA). When compared to the UVAR XTS instrument, the efficacy of the CELLEX instrument to arrest the decline in lung function in patients with chronic lung allograft dysfunction (CLAD) related to bronchiolitis obliterans (BOS) has not been previously evaluated.Methods: The relative efficacy of the CELLEX vs UVAR XTS ECP instruments was assessed by comparing the difference in rates of FEV1 decline before and after ECP treatment and survival in two series of lung allograft recipients with BOS who had been treated with these instruments.Results: Similar Slope Difference values for change in rate of decline (6 months Post ECP - Pre ECP) were observed between the two cohorts (UVAR XTS: 85 ± 109 mL/month vs CELLEX: 76 ± 128 mL/month, p=0.72). A similar percentage of patients responded to ECP (UVAR XTS: 77% vs CELLEX: 89%; p=0.36) i.e., as defined as a positive difference in slope between the rate of decline of FEV1 before and 6 months after ECP. Survival at either 6 (p=0.89) or 12 (p=0.8) months after the start of ECP was not associated with instrument used despite a trend in higher early mortality (34% vs 17%, p=0.054) in the patients who were predominately treated with the CELLEX.Conclusions: Our data support the use of the CELLEX for prospective studies designed to evaluate the merits of ECP in this population. [ABSTRACT FROM AUTHOR]

Introduction: Maternity services underwent much change during the COVID‐19 pandemic. Research on the impact on miscarriage care and experiences during this time is sparse. Within a national evaluation of recurrent miscarriage care, we qualitatively explored stakeholder views and experiences of recurrent miscarriage services in Ireland. This study describes the impact of the COVID‐19 pandemic on those experiences and perceptions of care. Methods: People with professional and lived experience of recurrent miscarriage and service engagement were actively involved in this qualitative study from idea generation to analysis and reporting. We recruited women and men with two or more consecutive first‐trimester miscarriages, and people involved in the management/delivery of recurrent miscarriage services and supports. We used purposive sampling to ensure that perspectives across disciplinary or lived experience, geographical, and health service administrative areas, were included. We conducted semi‐structured interviews, virtually all due to COVID‐19 restrictions, between June 2020 and February 2021. These were audio‐recorded, and data were transcribed, and subsequently analyzed using reflexive thematic analysis. Results: We interviewed 42 service providers and 13 women and 7 men with experience of recurrent miscarriage. We actively generated two central themes during data analysis. The first—'Disconnected'—describes how many women navigated miscarriage diagnosis and management and care in subsequent pregnancies alone; many felt that this resulted in increased trauma. At the same time, men struggled with not being present to support their partners and described feeling disconnected. The second theme highlighted 'The perceived dispensability of recurrent miscarriage services and supports'. Some service providers felt that service reduction and redeployment demonstrated a lack of value in the service. Virtual clinics facilitated access to services, but a preference for in‐person care was highlighted. Conclusion: Our analysis provides rich insights into the significant impacts that the COVID‐19 pandemic has had on the way recurrent miscarriage care is provided and experienced, with important implications for early pregnancy, miscarriage and recurrent miscarriage care. Services have undergone significant changes and, while these may be temporary, how services should be delivered in the future requires consideration, particularly given the deficits in care and care experiences highlighted prepandemic. Patient or Public Contribution: Members of the multidisciplinary RE:CURRENT Project Research Advisory Group (including four parent advocates, two of whom are co‐authors on this article) were actively involved throughout the study, including the generation of topic guides and the refining of themes. [ABSTRACT FROM AUTHOR]

Background: Children with Down syndrome (DS) are at increased risk of developing acute leukemia and are more prone to acute toxicities. We studied the incidence and severity of chronic health conditions among survivors of childhood leukemia with DS compared with those without DS.Methods: Chronic health conditions reported by questionnaire were compared between 154 pediatric leukemia survivors with DS and 581 without DS, matched by leukemia, age at diagnosis, race/ethnicity, sex, radiation location and chemotherapy exposure using Cox models to estimate hazard ratios (HRs) and 95% confidence intervals (CIs). Subjects were selected from 7139 5-year survivors of leukemia in the Childhood Cancer Survivor Study.Results: Risk of at least 1 late onset chronic health condition (grade 1-5) was similar in the DS population compared with the non-DS group (HR, 1.1; 95% CI, 0.7-1.5). Serious chronic health conditions (grade 3-5) were more common in DS survivors (HR, 1.7; 95% CI, 1.1-2.6), as were ≥ 3 chronic health conditions (grades 1-5) (HR, 1.7; 95% CI, 1.2-2.4). The 25-year cumulative incidence of any condition (grades 1-5) was 83% for DS survivors and 69% for non-DS survivors.Conclusion: Leukemia survivors with DS have therapy-related chronic health conditions comparable to those of similarly treated survivors without DS, with a few notable exceptions: 1) an increased risk of cataracts, hearing loss, and thyroid dysfunction compared with survivors without DS (though these are known risks in the DS population), 2) decreased risk of second cancers, and 3) increased risk of severe or multiple conditions. Practitioners should be aware of these risks during and after therapy. Cancer 2018;124:617-25. © 2017 American Cancer Society. [ABSTRACT FROM AUTHOR]

Objectives: To explore how former patients in dialectical behaviour therapy for adolescents (DBT‐A) experience their treatment, and specifically if there were aspects of the treatment that they retrospectively identify as particularly meaningful, helpful or unhelpful. Design: From a larger sample of 75 former DBT‐A patients 19 were selected for a qualitative semi‐structured interview study. Methods: Young adults (N = 19; 18 females, one male), who as adolescents had been enrolled in DBT‐A due to self‐harming behaviours and features of borderline personality disorder, were interviewed up to 8 years (median 6.0; min 1.3; max 8.2) after end of treatment, at mean age 23 years (SD 2.5). Reflexive thematic analysis was implemented. Results: Six key themes were revealed; (1) The need to be seen, listened to and believed in, (2) the importance of teamwork between patient and therapist, (3) the value of group and structure, (4) therapy as lifesaving and life‐changing, (5) the risks of feeling misplaced and (6) the risks of abrupt endings. Conclusion: A trusting relationship with the therapist promoted commitment and motivation for treatment. This relationship was facilitated by the therapist showing explicit care and belief in the patient's own competence in changing their destructive behaviours. Meeting peers in group skill training offered a salient form of validation and was reported to be of particular value. The format of meeting peers and the importance of the dialectical therapeutic stance need to be studied further. Not all youth experienced DBT‐A as suitable and the need for sufficient treatment dose was emphasized. [ABSTRACT FROM AUTHOR]

Aim: The aim of this study is to describe experiences of brief admission (BA) of people with borderline personality disorder and self‐harming behaviour, from the perspective of their relatives. Design: A descriptive qualitative design was chosen. Methods: Twelve relatives of people with borderline personality disorder and self‐harming behaviour who had access to BA were interviewed. Data were analysed with qualitative conventional content analysis. Results: One overarching category: Hope for the future and three categories occurred: Breathing space, Personal responsibility and Structure. BA created hope for the future and the relatives appreciated that BA is a freer and easily accessible form of care that enables help at an early stage, compared with usual care. When BA functions, the structure and pre‐determined days of care give relatives a breathing space, and the uncertainty diminishes for the children, as the parent can still be present during inpatient care. The lack of places was described as a disadvantage of BA. [ABSTRACT FROM AUTHOR]

Individuals with depressive symptoms often experience changes in physical activity and lifestyle factors. Despite the benefits of exercise, mental health clinicians often do not refer for or prescribe exercise as part of traditionally accepted models of care for consumers with depression and anxiety. The aims were to investigate: (i) mental health clinicians' understanding of the relationship between exercise and mental health, (ii) if and how exercise is used by mental health clinicians in treatment for depression and anxiety, and (iii) the barriers to prescription of exercise. A descriptive qualitative method was used, and data were collected via individual semi‐structured interviews. Ten mental health clinicians with varying backgrounds participated in this study. The data driven inductive analysis of participants views identified three themes: (i) knowing and not knowing, (ii) consumer comorbidities – the risk and benefit dilemma, and (iii) protecting vulnerable consumers. Enhancing clinicians' knowledge of the beneficial role of exercise in treatment for consumers' experiencing depression and anxiety is an important step. Mental health services can support integration of exercise by implementing policies and training for staff to support exercise prescription, and the role and referral of exercise and physical activity specialists, as part of routine care to improve clinical outcomes for consumers. Additional considerations should be given to fiscal support to access exercise as an adjunct therapy. [ABSTRACT FROM AUTHOR]

Introduction: Following 2016 legislation permitting limited access to cannabis for research and medicinal purposes, the number of randomized clinical trials (RCTs) investigating the effectiveness of medicinal cannabis (MC) on symptom burden relief in cancer contexts has increased in Australia. This study aimed to understand the perceptions, hopes and concerns of people with advanced cancer regarding the future availability and regulation of MC in Australia. Methods: This qualitative study draws on semistructured interviews conducted between February 2019 and October 2020 in Brisbane, Australia, as part of an MC RCT substudy. Interviews were undertaken on 48 patients with advanced cancer in palliative care eligible to participate in an MC trial (n = 26 participated in an RCT; n = 2 participated in a pilot study; n = 20 declined). Interviews included a discussion of patients' decision‐making regarding trial participation, concerns about MC and perceptions of future availability, including cost. Transcribed interviews were analysed inductively and abductively, informed by constructivist thematic analysis conventions. Results: Overall, participants supported making MC legally accessible as a prescription‐only medication. Fear of financial toxicity, however, compromised this pathway. Steep posttrial costs of accessing MC prompted several people to decline trial participation, and others to predict—if found effective—that many would either access MC through alternative pathways or reduce their prescribed dosage to enable affordable access. Conclusions: These findings suggest that—despite a relatively robust universal healthcare system—Australians are potentially vulnerable to and fearful of financial toxicity. Prevalent in the United States, financial toxicity occurs when disadvantaged cancer patients access necessary but expensive medications with lasting consequences: bankruptcy, ongoing anxiety and cancer worry. Interview transcripts indicate that financial fears—and the systems sustaining them—may pose a threat to RCT completion and to equitable access to legal MC. Such findings support calls for embedding qualitative substudies and community partnerships within RCTs, while also suggesting the importance of subsidisation to overcoming injustices. Patient or Public Contribution: A patient advisory committee informed RCT design. This qualitative substudy foregrounds patients' decision‐making, perceptions and experiences. [ABSTRACT FROM AUTHOR]

Aim: This integrative review aimed to describe the perceptions of the quality of care of older patients (aged 65 and above) living with cancer in acute‐care settings. Methods: We identified relevant research suitable for inclusion criteria through systematic searches of the PubMed®, EBSCOhost Academic Search Premier®, Scopus® and Web of Science® databases. The Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) framework and the Synthesis Without Meta‐analysis (SWiM) guidelines were used to conduct the research and report the results. The quality of the studies was evaluated using the modified Critical Skills Appraisal Programme (CASP) checklist. Results: A total of 24 studies met the inclusion criteria. The data analysis revealed that care quality could be described through three distinct themes: individuality, a sense of security and respectful encounters. Conclusion: The perceptions of older people living with cancer regarding the quality of acute care have not been extensively covered in the literature. Health‐ and age‐related challenges, patients' overall life situation, clear, realistic information about care and the future and respect during encounters should be given attention. Implications for practice: Patient‐centred and tailored care, considering the heterogeneity of the population and support for independence, is needed. [ABSTRACT FROM AUTHOR]

Background and Objectives: We examined youth recovery outcomes at 6- and 9-months post-participation in an aftercare pilot study called Educating and Supporting inQuisitive Youth in Recovery (ESQYIR) that aimed to investigate the utility of a 12-week mobile texting recovery support intervention.Methods: A total of 80 youth [Mage 20.4 (SD = 3.5)] were randomized to a mobile texting aftercare intervention or an aftercare-as-usual control group. Both groups received identical data collection protocols with psychosocial and behavioral assessments occurring at baseline, during the trial (months 1 and 2), at discharge from the trial (month 3), and 3-, 6-, and 9-month post-intervention follow-ups.Results: Mixed modeling showed that youth who participated in the mobile texting aftercare intervention were less likely to test positive for their primary drug compared to youth in the aftercare-as-usual condition during 6- and 9-months follow-ups (p < .01). Additionally, youth in the aftercare intervention reported significantly higher self-efficacy/confidence to abstain during recovery (p < .05) and were more likely to participate in recovery-related behaviors (self-help and goal-directed extracurricular activities; p < .05) than those in aftercare-as-usual at the 6- and 9-month follow-ups.Conclusions: Results suggest that delivering a structured, behavioral-based wellness aftercare intervention using mobile texting can be an effective for sustaining recovery outcomes in youth over time compared to youth who receive aftercare-as-usual.Scientific Significance: This study shows that a mobile-texting aftercare intervention sustained effects at 6- and 9-months post-intervention for young people in substance use recovery. [ABSTRACT FROM AUTHOR]

Background: Perioperative experience can be very distressing in adolescence if not managed properly by healthcare professionals. In the clinical context, the emotional expression of the adolescent is less spontaneous, which makes the assessment of anxiety, pain or even the desire to be involved in the perioperative process, difficult. Listening to their perioperative experiences will permit an understanding of their difficulties and expectations, regardless of the surgical intervention undergone. Aim: To explore the adolescents' perioperative experiences in relation to inpatient and outpatient elective surgery. Methods: Qualitative exploratory study, with thematic analysis approach. A purposive sample of 40 adolescents aged 14–18 years and in the perioperative period, from two paediatric surgery settings in a university hospital, was questioned from January to July 2020. Data were collected using a semi‐structured interview and analysed inductively with qualitative thematic analysis. Results: The data yielded one major theme, five themes, and 14 sub‐themes. The major theme, Adolescent in perioperative period, included the five themes: (1) emotional and psychological aspects; (2) physical aspects; (3) social aspects; (4) organizational aspects; (5) previous surgical experience. Adolescents expressed fear of the unknown, anxiety, difficulty in pain control, and feelings of autonomy loss. Issues related to withdrawal from school and friends is also a focus of adolescent concern during the perioperative period. Despite showing satisfaction with the way they were cared for, they complained about the lack of pre‐ and post‐operative preparation. Conclusion: There are aspects that should be considered when caring for adolescents in perioperative period. As far as possible, programmes to prevent adolescents' anxiety in perioperative period should be designed in a holistic perspective, with aim at the psychological, physical, sociocultural, and organisational aspects. [ABSTRACT FROM AUTHOR]

Introduction and Aims: Opioid overdose prevention programs providing take-home naloxone have been expanding internationally. This paper summarises findings and lessons learnt from the Overdose Prevention and Emergency Naloxone Project which is the first take-home naloxone program in Australia implemented in a health care setting.Methods: The Project intervention provided education and take-home naloxone to opioid-using clients at Kirketon Road Centre and The Langton Centre in Sydney. The evaluation study examined uptake and acceptability of the intervention; participants' knowledge and attitudes regarding overdose and participants' experience in opioid overdose situations six months after the intervention. Participants completed baseline, post-training and follow-up questionnaires regarding overdose prevention and management which were analysed using repeated measures analysis of variance.Results: Eighty-three people participated in the intervention, with 35 (42%) completing follow-up interviews-51% reporting using naloxone with 30 overdoses successfully reversed. There were significant improvements in knowledge and attitudes immediately following training with much retained at follow-up, particularly regarding feeling informed enough (97%) and confident to inject naloxone (100%).Discussion: Take-home naloxone programs can be successfully implemented in Australian health settings. Barriers to uptake, such as lengthy processes and misperceptions around interest in overdose prevention, should be addressed in future program implementation. [ABSTRACT FROM AUTHOR]

Background: The lack of high‐quality evidence to support specific treatment approaches has been widely documented in the existing literature, with evidence suggesting speech and language therapists (SLTs) frequently rely on experience and expert opinion to inform treatment. One approach that is commonly used within dysphagia management, in spite of a lack of existing evidence to support its efficacy, is the use of oral trials, otherwise known as swallow trials or tasters. This approach involves offering specified, limited amounts of oral diet or fluids for those at risk of aspiration or choking if full amounts are taken orally and may be recommended for rehabilitation or quality of life. Methods & Procedures: A total of nine SLTs working in one acute hospital volunteered to participate in focus groups in order to discuss their experience and clinical reasoning for using oral trials within one inpatient hospital setting in the UK. The objectives of this study were (1) to explore how oral trials are used within one inpatient hospital; (2) to consider the barriers and facilitators to the approach; and (3) to consider why this approach may be favoured over other evidenced dysphagia therapies. A grounded theory approach was used to guide data analysis, using two independent coders to identify themes within the focus groups. Outcomes & Results: Analysis of data revealed the following themes: (1) delivering oral trials requires 'a whole team approach'; (2) SLTs vary recommendations based on patient and environmental factors; and (3) oral trials as a holistic approach. Conclusions & Implications: The use of oral trials was considered by SLTs to be a holistic and flexible approach which can be adapted to a range of patient and environmental factors. Although clinical experience guided rationale, an understanding of the principles of neuroplasticity and swallow physiology was also integral to the approach. Further research is warranted to investigate the use and efficacy of oral trials across the SLT community and within specific patient groups and different environments. [ABSTRACT FROM AUTHOR]