The VOICE study – a before and after study of a dementia communication skills training course

Background A quarter of acute hospital beds are occupied by persons living with dementia, many of whom have communication problems. Healthcare professionals lack confidence in dementia communication skills, but there are no evidence-based communication skills training approaches appropriate for professionals working in this context. We aimed to develop and pilot a dementia communication skills training course that was acceptable and useful to healthcare professionals, hospital patients and their relatives. Methods The course was developed using conversation analytic findings from video recordings of healthcare professionals talking to patients living with dementia in the acute hospital, together with systematic review evidence of dementia communication skills training and taking account of expert and service-user opinion. The two-day course was based on experiential learning theory, and included simulation and video workshops, reflective diaries and didactic teaching. Actors were trained to portray patients living with dementia for the simulation exercises. Six courses were run between January and May 2017. 44/45 healthcare professionals attended both days of the course. Evaluation entailed: questionnaires on confidence in dementia communication; a dementia communication knowledge test; and participants’ satisfaction. Video-recorded, simulated assessments were used to measure changes in communication behaviour. Results Healthcare professionals increased their knowledge of dementia communication (mean improvement 1.5/10; 95% confidence interval 1.0–2.0; p<0.001). Confidence in dementia communication also increased (mean improvement 5.5/45; 95% confidence interval 4.1–6.9; p<0.001) and the course was well-received. One month later participants reported using the skills learned in clinical practice. Blind-ratings of simulated patient encounters demonstrated behaviour change in taught communication behaviours to close an encounter, consistent with the training, but not in requesting behaviours. Conclusion We have developed an innovative, evidence-based dementia communication skills training course which healthcare professionals found useful and after which they demonstrated improved dementia communication knowledge, confidence and behaviour

A concise patient reported outcome measure for people with aphasia: the aphasia impact questionnaire 21

Background: There are many validated and widely used assessments within aphasiology. Few, however, describe language and life with aphasia from the perspective of the person with aphasia. Across healthcare, patient experience and user involvement are increasingly acknowledged as fundamental to person-centred care. As part of this movement, Patient Reported Outcome Measures (PROMs) are being used in service evaluation and planning. Aims: This paper reports the quantitative aspects of a mixed methods study that developed and validated a concise PROM, the Aphasia Impact Questionnaire (AIQ), co-produced with People with Aphasia (PWA). Methods & Procedures: The AIQ was developed within the social model of disability and all stages of the development of the AIQ were performed in partnership with PWA. It was adapted from a pre-existing and lengthier PROM for PWA, the Communication Disability Profile. The first iterations of the AIQ focused on domains of communication, participation and well-being/emotional state. Subsequently the AIQ was extended to include additional items relating to reading and writing (AIQ-21). The research design was iterative. Initially, concurrent validity, internal consistency, and sensitivity of the AIQ-prototype were obtained. The AIQ-prototype was modified to become the AIQ-21. Statistical testing with a new group of PWA was performed, investigating internal consistency and concurrent validity of the AIQ-21. Outcomes & Results: Results for both the AIQ-prototype and AIQ-21 showed statistically significant concurrent validity and good internal consistency. Repeated measurement using the AIQ-prototype demonstrated statistically significant change after PWA accessed a community intervention. Conclusions: The AIQ-21 is a PROM that has great potential to be one of the core set of aphasia tests for clinical and research use. Results can be used alongside language assessment to enable person-centred goal setting and partnership working for people with aphasia

Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: An international expert consensus

Purpose: Primary progressive aphasia (PPA) is a language-led dementia associated with Alzheimer’s pathology and fronto-temporal lobar degeneration. Multiple tailored speech and language interventions have been developed for people with PPA. Speech and language therapists/speech-language pathologists (SLT/Ps) report lacking confidence in identifying the most pertinent interventions options relevant to their clients living with PPA during their illness trajectory. Materials and methods: The aim of this study was to establish a consensus amongst 15 clinical-academic SLT/Ps on best practice in selection and delivery of speech and language therapy interventions for people with PPA. An online nominal group technique (NGT) and consequent focus group session were held. NGT rankings were aggregated and focus groups video recorded, transcribed, and reflexive thematic analysis undertaken. Results: The results of the NGT identified 17 items. Two main themes and seven further subthemes were identified in the focus groups. The main themes comprised (1) philosophy of person-centredness and (2) complexity. The seven subthemes were knowing people deeply, preventing disasters, practical issues, professional development, connectedness, barriers and limitations, and peer support and mentoring towards a shared understanding. Conclusions: This study describes the philosophy of expert practice and outlines a set of best practice principles when working with people with PPA.Implications for rehabilitation Primary progressive aphasia (PPA) describes a group of language led dementias which deteriorate inexorably over time. Providing speech and language therapy for people with PPA is complex and must be person centred and bespoke. This study describes the philosophy of expert practice and outlines a set of best practice principles for speech and language therapists/pathologists working with people with people with PPA

Treatment Regimens with Ranibizumab in Neovascular Age-Related Macular Degeneration: Real-World Results from the PACIFIC Study Author List

Katrin Lorenz,1 Christos Haritoglou,2 Daniel Barthelmes,3 Armin Mir Mohi Sefat,4 H&amp;uuml;sn&amp;uuml; Berk,5 Erik Beeke,6 Martin Scheffler,7 Matthias Iwersen,8 Bettina M&amp;uuml;ller,8 Focke Ziemssen9,10 On behalf of members of the PACIFIC study group1Augenklinik und Poliklinik, Universit&amp;auml;tsmedizin Mainz, Mainz, Germany; 2Herzog Carl Theodor Eye Hospital, Munich, Germany; 3Augenklinik, Universit&amp;auml;ts Spital Z&amp;uuml;rich, Zurich, Switzerland; 4Klinik f&amp;uuml;r Augenheilkunde, Universit&amp;auml;tsklinikum Schleswig-Holstein, Campus Luebeck, Luebeck, Germany; 5Klinik f&amp;uuml;r Augenheilkunde, St. Elisabeth-Krankenhaus GmbH, Cologne, Germany; 6Augenzentrum Osnabrueck, Osnabrueck, Germany; 7Augenheilkunde Rhauderfehn, Rhauderfehn, Germany; 8Novartis Pharma GmbH, Nuremberg, Germany; 9Klinik und Poliklinik fuer Augenheilkunde, Universit&amp;auml;tsklinikum Leipzig, Leipzig, Germany; 10Department Fuer Augenheilkunde, Eberhard-Karls-Universit&amp;auml;t Tuebingen, Tuebingen, GermanyCorrespondence: Katrin Lorenz, Augenklinik und Poliklinik, Universit&amp;auml;tsmedizin Mainz, Johannes Gutenberg-University Mainz, Langenbeckstr. 1, Mainz, 55131, Germany, Email [email protected]: Intravitreal anti-VEGF is the gold standard for treating neovascular age-related macular degeneration (nAMD). The treatment success depends not only on drug efficacy but also on regimen feasibility for physicians and patients. The implementation of different regimen might lead to varying outcomes. &amp;ldquo;Treat-and-extend&amp;rdquo; aims to minimize undertreatment with injections at each visit and tailored intervals. This study investigates the utilization and effectiveness of ranibizumab in nAMD, focusing on different treatment regimens in real-world settings.Materials and Methods: The PACIFIC study, a non-interventional, prospective, multicenter study, included nAMD patients treated with ranibizumab at 185 sites across Germany, the Netherlands and Switzerland. Over 24 months, functional and morphological outcomes were documented for 3051 patients over 24 months, highlighting the practiced treatment regimens.Results: A pattern of an observational approach with nevertheless increasing interval extension prevailed (70.4%, 1028 pre-treated; 68.6%, 1090 treatment-na&amp;iuml;ve patients), emerging as the preferred strategy within the first 3 months. Across all regimens, the average number of injections was comparable (mean &amp;plusmn; SD: 7.34&amp;nbsp;&amp;plusmn;&amp;nbsp; 5.30 in pre-treated; 7.26&amp;nbsp;&amp;plusmn;&amp;nbsp; 4.70 in treatment-na&amp;iuml;ve patients). The treat and extend regimen, however, demonstrated superior effectiveness in improving visual acuity, particularly among treatment-na&amp;iuml;ve patients (number of injections: 7.89&amp;nbsp;&amp;plusmn;&amp;nbsp; 5.54 pre-treated; 9.54&amp;nbsp;&amp;plusmn;&amp;nbsp; 5.42 treatment-na&amp;iuml;ve patients).Conclusion: Over 2-year observational period, the treat and extend regimen emerged as a highly effective approach, particularly for those newly diagnosed, with a low risk of undertreatment. Despite its benefits, an unconscious shift to a observe-and-extend or &amp;ldquo;monitor-and-extend&amp;rdquo; approach occurred early in treatment, highlighting the need for tailored approaches to optimize patient outcomes in clinical practice.Keywords: anti-VEGF, visual acuity, treatment regimen, functional outcome, real-world result

Aphasia partnership training: What outcomes do people with aphasia, family members and speech and language therapists expect?

Introduction Life with aphasia affects the whole family with shorter, less frequent conversations, frustration, reduced social networks, isolation and tension in relationships. Evidence suggests communication partner training (CPT) benefits families. However, expected improvements are poorly articulated. The Aphasia Partnership Training (APT) project aimed to identify target outcomes of a new family dyad CPT programme through persons with aphasia (PWA), family member and speech and language therapist (SLT) consensus. Method Consensus on desired outcomes was achieved through nominal groups with 20 people with mild to severe aphasia across five groups and 10 family members of people with mild to severe aphasia across three groups, each facilitated by —two to three SLTs. Twelve CPT researchers 16 clinical SLTs with experience of CPT participated in a three-round eDelphi to gain consensus on outcomes they perceived most likely to change. Results were triangulated using a convergence coding scheme to demonstrate agreement, partial agreement, dissonance or silence amongst the three stakeholder groups. Results All stakeholders agreed ‘conversation’ and ‘thoughts and feelings’ were very important outcomes of APT/very likely to change (agreement). Change in ‘relationships’ was very important to family members, important to PWA and considered very likely to change by SLTs (partial agreement). Change in ‘language’ (specifically talking) was very important to PWA, but not important to family members, and SLTs were uncertain about language improvement from APT (dissonance). Each outcome construct is illustrated by specific examples generated and agreed by all stakeholder groups. Conclusions We should aim to achieve improvements in conversation and thoughts and feelings with CPT, consider the impact on relationships and investigate the potential for language improvement (talking) as an outcome of APT. Outcome measures can be selected based on good coverage of examples generated within these constructs, ensuring they are meaningful to PWA and family members. WHAT THIS PAPER ADDS What is already known on the subject We know that people with aphasia (PWA) and their family members often find it difficult to communicate together with wide-reaching consequences. We know that communication partner training (CPT) benefits families as demonstrated in two systematic reviews of 56 small studies. We also know what outcomes PWA and their families want from speech and language therapy in general, but there is little clarity in the literature about what outcomes are expected from CPT specifically. What this paper adds to existing knowledge This paper highlights the outcomes PWA, family members and speech and language therapists expect from a new CPT programme called Aphasia Partnership Training. These outcomes can be considered for all family dyad CPT programmes. What are the potential or actual clinical implications of this work? The outcomes identified through the stakeholder consensus presented from this study can be used to set goals and monitor the success of CPT, help PWA and family members decide whether they want to participate in a communication partner intervention, and ensure that measures used to evaluate the success of CPT interventions are meaningful to PWA and their families

Communication between people living with dementia and healthcare practitioners in hospital: developing and evaluating a staff training intervention: the VOICE study

Background 25% of hospital beds are occupied by a person living with dementia. Dementia affects expressive communication and understanding. Healthcare professionals report lack of communication skills training. Objectives To identify teachable effective strategies for communication between healthcare professionals and people living with dementia, and to develop and evaluate a communication skills training course. Design We undertook a systematic literature review, video-recorded 41 encounters between staff and people with dementia, and used conversation analysis to investigate communication problems and solutions. We designed a communication skills training course using co-production and multiple pedagogic approaches. We ran a pilot, followed by six courses for healthcare professionals. We measured knowledge, confidence and communication behaviours before, immediately-and one month-after the course, and undertook interviews with participants and managers. Behaviours were measured using blind-rated videos of simulations. Setting General hospital acute geriatric medical wards; clinical skills centre. Participants We video-recorded 26 people with dementia and 26 professionals. Ten experts in dementia care, education, simulation and communication contributed to intervention development. Six healthcare professionals took part in a pilot course and 45 took part in the training. Results Literature review identified 27 studies, describing ten communication strategies, with modest evidence of effectiveness. Healthcare professional-initiated encounters followed a predictable phase structure. Problems were apparent in requests (with frequent refusals) and in closings. Success was more likely when requests were made directly, with high entitlement (authority to ask), and with lowered contingencies (made to sound less difficult , by minimising the extent or duration of the task, as king patients ‘to try’, offering help, or proposing collaborative action). Closings were more successful if the healthcare professional announced the end of the task, made a specific arrangement, body language matched talk, and through use of ‘closing idioms’. The training course comprised two days, one month apart, using experiential learning, including lectures, video-workshops, small group discussion, simulation (with specially-trained actors) and reflection. We emphasised incorporation of previous expertise, and commitment to person-centred care. 44 participants returned for the second training day; 43 provided complete evaluation data. Knowledge and confidence both increased. Some behaviours, especially relating to closings, were more commonly used after training. The course was highly-rated in interviews, especially the use of simulation, real-life video clips, and interdisciplinary learning. Participants reported that they found the methods useful in practice and were using them a month after the course finished. Limitations Data were from people with moderate to severe dementia, in an acute hospital, during healthcare professional initiated interactions. Analysis was limited to problems and solutions that were likely to be ‘trainable’. Actors required careful preparation to simulate people with dementia. Communication skills training course participants were volunteers, unlikely to be representative of the general workforce, who displayed high levels of baseline knowledge, confidence and skills. Before-and-after evaluations, and qualitative interviews, are prone to bias. Future work Further research should investigate a wider range of health, social care and family carers. Conversation analysis should be used to investigate other aspects of healthcare communication. Conclusions Requests and closings pose particular difficulties for professionals communicating with people with dementia. We identified solutions to these problems and incorporated them into communication skills training, which improved knowledge, confidence and some communication behaviours. Simulation was an effective training modality

Plasma physics and control studies planned in JT-60SA for ITER and DEMO operations and risk mitigation

| openaire: EC/H2020/633053/EU//EUROfusionA large superconducting machine, JT-60SA has been constructed to provide major contributions to the ITER program and DEMO design. For the success of the ITER project and fusion reactor, understanding and development of plasma controllability in ITER and DEMO relevant higher beta regimes are essential. JT-60SA has focused the program on the plasma controllability for scenario development and risk mitigation in ITER as well as on investigating DEMO relevant regimes. This paper summarizes the high research priorities and strategy for the JT-60SA project. Recent works on simulation studies to prepare the plasma physics and control experiments are presented, such as plasma breakdown and equilibrium controls, hybrid and steady-state scenario development, and risk mitigation techniques. Contributions of JT-60SA to ITER and DEMO have been clarified through those studies.Peer reviewe

Measuring communication as a core outcome in aphasia trials: Results of the ROMA-2 international core outcome set development meeting

BACKGROUND: Evidence-based recommendations for a core outcome set (COS; minimum set of outcomes) for aphasia treatment research have been developed (the Research Outcome Measurement in Aphasia-ROMA, COS). Five recommended core outcome constructs: communication, language, quality of life, emotional well-being and patient-reported satisfaction/impact of treatment, were identified through three international consensus studies. Constructs were paired with outcome measurement instruments (OMIs) during an international consensus meeting (ROMA-1). Before the current study (ROMA-2), agreement had not been reached on OMIs for the constructs of communication or patient-reported satisfaction/impact of treatment. AIM: To establish consensus on a communication OMI for inclusion in the ROMA COS. METHODS & PROCEDURES: Research methods were based on recommendations from the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Participants with expertise in design and conduct of aphasia trials, measurement instrument development/testing and/or communication outcome measurement were recruited through an open call. Before the consensus meeting, participants agreed on a definition of communication, identified appropriate OMIs, extracted their measurement properties and established criteria for their quality assessment. During the consensus meeting they short-listed OMIs and participants without conflicts of interest voted on the two most highly ranked instruments. Consensus was defined a priori as agreement by ≥ 70% of participants. OUTCOMES & RESULTS: In total, 40 researchers from nine countries participated in ROMA-2 (including four facilitators and three-panel members who participated in pre-meeting activities only). A total of 20 OMIs were identified and evaluated. Eight short-listed communication measures were further evaluated for their measurement properties and ranked. Participants in the consensus meeting (n = 33) who did not have conflicts of interest (n = 29) voted on the top two ranked OMIs: The Scenario Test (TST) and the Communication Activities of Daily Living-3 (CADL-3). TST received 72% (n = 21) of 'yes' votes and the CADL-3 received 28% (n = 8) of 'yes' votes. CONCLUSIONS & IMPLICATIONS: Consensus was achieved that TST was the preferred communication OMI for inclusion in the ROMA COS. It is currently available in the original Dutch version and has been adapted into English, German and Greek. Further consideration must be given to the best way to measure communication in people with mild aphasia. Development of a patient-reported measure for satisfaction with/impact of treatment and multilingual versions of all OMIs of the COS is still required. Implementation of the ROMA COS would improve research outcome measurement and the quality, relevance, transparency, replicability and efficiency of aphasia treatment research. WHAT THIS PAPER ADDS: What is already known on this subject International consensus has been reached on five core constructs to be routinely measured in aphasia treatment studies. International consensus has also been established for OMIs for the three constructs of language, quality of life and emotional well-being. Before this study, OMIs for the constructs of communication and patient-reported satisfaction/impact of treatment were not established. What this paper adds to existing knowledge We gained international consensus on an OMI for the construct of communication. TST is recommended for inclusion in the ROMA COS for routine use in aphasia treatment research. What are the potential or actual clinical implications of this work? The ROMA COS recommends OMIs for a minimum set of outcomes for adults with post-stroke aphasia within phases I-IV aphasia treatment research. Although not intended for clinical use, clinicians may employ the instruments of the ROMA COS, considering the quality of their measurement properties. The systematic inclusion of a measure of communication, such as TST, in clinical practice could ultimately support the implementation of research evidence and best practices