Supporting early-career dementia researchers: Identifying support needs and ways forward via a European study.

INTRODUCTION: Early-career researchers contribute significantly to dementia research and clinical practice. However, a growing group of early-career dementia researchers (ECDRs) lack appropriate support throughout their careers. Thus, we aim to (i) explore support needs, (ii) determine recommendations, and (iii) set the agenda for organizations to better support ECDRs. METHODS: An iterative, explanatory sequential mixed-methods design was applied. First ECDRs' needs were identified using an online survey informed by the Vitae Researcher Development Framework. Next, priority areas were selected and explored qualitatively with ECDRs in two workshops, utilizing the World Café methodology. RESULTS: Sixty-five ECDRs throughout Europe completed the survey, with the majority reporting that greater support is needed in terms of funding and career opportunities, social support and well-being, and "wide-reaching" dissemination. DISCUSSION: Based on the findings, six recommendations for support organizations, funding bodies, and universities to better support ECDRs are formulated, each intended for specific target audiences. HIGHLIGHTS: This article reports on focal points of career-related support needed in doctoral education and postdoctoral employment to foster a healthier academic environment, including finance, work-life balance, dissemination of research findings, and supervision, both in general and in dementia fields specifically. Funding and resources were identified as a significant challenge, and there was a call for more long-term positions and transition funding for postdoctoral researchers. Early-career dementia researchers addressed the need for support in producing outputs for non-academic audiences, including people living with dementia. The importance of disseminating research to diverse audiences has long been recognized; thus, it is critical that early-career dementia researchers be supported in this effort. Recommendations were formulated for researcher support (organizations), funding bodies, and universities. These recommendations include providing support for disseminating research to non-academic audiences, offering training in supervision skills, and promoting peer-to-peer mentoring and social activities for early-career dementia researchers.

Tools and methods for evaluating the change to health service delivery due to pandemics or other similar emergencies: A rapid evidence review.

The novel coronavirus, SARS-CoV-2 and its associated disease COVID-19, were declared a pandemic in March 2020. Countries developed rapid response activities within their health services to prevent spread of the virus and protect their populations. Evaluating health service delivery change is vital to assess how adapted practices worked, particularly during times of crisis. This review examined tools and methods that are used to evaluate health service delivery change during pandemics and similar emergencies. Five databases were searched, including PubMed, CENTRAL, Embase, CINAHL, and PsycINFO. The SPIDER tool informed the inclusion criteria for the articles. Articles in English and published from 2002 to 2020 were included. Risk of bias was assessed using the Mixed-Methods Appraisal Tool (MMAT). A narrative synthesis approach was used to analyse the studies. Eleven articles met the inclusion criteria. Many evaluation tools, methods, and frameworks were identified in the literature. Only one established tool was specific to a particular disease outbreak. Others, including rapid-cycle improvement and PDSA cycles were implemented across various disease outbreaks. Novel evaluation strategies were common across the literature and included checklists, QI frameworks, questionnaires, and surveys. Adherence practices, experience with telehealth, patient/healthcare staff safety, and clinical competencies were some areas evaluated by the tools and methods. Several domains, including patient/practitioner safety and patient/practitioner experience with telemedicine were also identified in the studies.

New horizons in hearing conditions.

Hearing conditions such as hearing loss, tinnitus and hyperacusis are highly prevalent in the population and can severely impact communication and quality of life. Hearing is affected by multiple factors, including heredity, noise exposure, age, sex, ear disorders and lifestyle factors. Globally, hearing loss affects over 80% of adults aged 80 years and older, is often experienced in combination with other long-term health conditions and is a mid-life risk factor for dementia. To form a themed collection, we searched Age and Ageing for articles on hearing conditions published from 2000 onwards. This resulted in 22 articles included within the collection. They examined a range of important topics related to hearing healthcare and research, including noise-induced hearing loss, health service quality and safety, psychological and psychosocial consequences of hearing loss and co-morbidities of hearing loss. All articles reported on hearing loss; there were no published articles with a primary focus on other hearing conditions such as tinnitus or hyperacusis, on the health of older people from the Deaf community or on users of Cochlear implants, suggesting key gaps in knowledge and targets for future research. This New Horizons article highlights novel directions in research and practice and takes a forward look at how research into hearing conditions may develop in years to come. It highlights opportunities for the growth of patient-centred research and hearing healthcare supported by the better integration of health and care services as well as cross-speciality working to include common co-morbid health conditions.

Patient perceptions of cognitive screening in adult audiology services: A qualitative exploration.

Introduction: Both hearing loss and dementia are extremely pervasive, especially amongst older adults. As hearing loss and dementia have common symptoms, misdiagnosis can be common, and failure to address hearing loss for people with dementia could accelerate cognitive decline. The timely detection of cognitive impairment is clinically important, however the use of cognitive assessments in adult audiology services is a hotly debated topic. Although the early detection of cognitive impairment may improve patient care and quality of life, patients attending audiology services for hearing assessment might not expect to be asked questions about their cognition. The aim of this study was to qualitatively explore patient and public perspectives and preferences on the use of cognitive screening within adult audiology services. Methods: Quantitative and qualitative data were gathered from an online survey and a workshop. Descriptive statistics were applied to quantitative data and an inductive thematic analysis was performed on free-text responses. Results: In total, 90 respondents completed the online survey. Overall, cognitive screening in audiology was reported to be acceptable to participants (92%). A reflexive thematic analysis of the qualitative data reported four themes: i) knowledge of cognitive impairment and screening, ii) implementation of cognitive screening, iii) impact of screening on patient and iv) contributions to future care and research. A workshop was held with five participants to discuss and reflect on the findings in more detail. Discussion: Participants found cognitive screening to be acceptable within adult audiology services providing audiologists had suitable training, and sufficient explanation and justification were provided. However, implications such as additional time and staff resource and supplementary training for audiologists would be required to address participants concerns.

A qualitative study showing that a telecare tool can have benefits before and during the initial hearing assessment appointment.

OBJECTIVE: To examine patient and audiologist experiences and perspectives of using a patient-centred telecare tool, the Ida Institute's Why Improve My Hearing? (WIMH) Tool, before and during the initial hearing assessment appointment. DESIGN: A qualitative study comprising individual semi-structured interviews using a maximum variation sampling strategy. The data were analysed using an established thematic analysis technique. STUDY SAMPLE: Fifteen participants, including ten patients (i.e. adults with hearing loss) and five audiologists, were recruited from Adult Audiology Services within the United Kingdom's publicly-funded National Health Service (NHS). RESULTS: Three themes described the impact of using the WIMH Tool. Theme 1 (i.e. enhanced preparation before the appointment): the Tool helps patients to better understand and accept their hearing difficulties in advance of their first appointment. Theme 2 (i.e. enriched discussion during the appointment): the tool can enhance patient-centred communication, as well as the efficiency of the appointment. Theme 3 (i.e. varied impact on outcomes following the appointment): the Tool can improve patient motivation, readiness, and involvement in decision-making, though it may have limited impact on additional outcomes, such as adherence. CONCLUSION: The WIMH Tool can be successfully implemented in audiological practice, resulting in benefits before and during the initial hearing assessment appointment.

Community first response and out-of-hospital cardiac arrest: Identifying priorities for data collection, analysis, and use via the nominal group technique.

AIM: Community First Response (CFR) is an important component of Out-of-hospital Cardiac Arrest management in many countries, including Ireland. Reliable, strategic data collection and analysis are required to support the development of CFR. However, data on CFR are currently limited in Ireland and internationally. This research aimed to identify the most important CFR data to record, the most important uses of CFR data, and barriers and facilitators to CFR data collection and use. METHODS: The Nominal Group Technique structured consensus process was used. An expert panel comprising key stakeholders, including volunteers, clinicians, researchers, policy-makers, and a patient, completed a survey to generate lists of the most important CFR data to record and the most important uses of CFR data. Subsequently, they participated in a consensus meeting to agree the top ten priorities from each list. They also identified barriers and facilitators to CFR data collection and use. RESULTS: The top ten CFR data items to record included volunteer response time, interventions/activities completed by volunteers, and the mental/physical impact on volunteers. The top ten most important uses of CFR data included providing feedback to volunteers, improving volunteer training, and measuring CFR effectiveness. Barriers included time constraints and limited training. Facilitators included having appropriate software/equipment and collecting minimal data. CONCLUSION: The results can guide CFR research and inform the development of CFR data collection and analysis policy and practice in Ireland and internationally. Ultimately, improving CFR data collection and use will help to optimise this important intervention and enhance its evidence base.

Quality improvement in a crisis: a qualitative study of experiences and lessons learned from the Irish National Ambulance Service response to the COVID-19 pandemic.

OBJECTIVES: The COVID-19 pandemic has produced radical changes in international health services. In Ireland, the National Ambulance Service established a novel home and community testing service that was central to the national COVID-19 screening programme. This service was overseen by a multidisciplinary response room. This research examined the response room service, particularly areas that performed well and areas requiring improvement, using a quality improvement (QI) framework. DESIGN: This was a qualitative study comprising semi-structured, individual interviews. Maximum variation sampling was used. The data were analysed using an established thematic analysis procedure. The analysis was guided by the framework, which comprised six QI drivers. SETTING: Response room employees, including clinicians, dispatchers and administrators, were interviewed via telephone. RESULTS: Leadership for quality: participants valued person-oriented leadership, including regular, open communication and consultation with staff. Person/family engagement: participants endeavoured to provide patient-centred care. Formal patient feedback mechanisms and shared decision-making could be beneficial in the future. Staff engagement: working in a response room could affect well-being, though it also provided networking and learning opportunities. Staff require support and teambuilding. Use of improvement methods: improvements were made in a relatively informal, ad hoc manner. The use of robust methods based on improvement science was not reported. Measurement for quality: data were collected to improve efficiency and accuracy. More rigorous measurement would be beneficial, especially formally collecting stakeholder feedback. Governance for quality: close alignment with collaborators and clear communication with staff are essential. Information and communications technology for quality: this seventh driver was added because the importance of information technology specially designed for pandemics was frequently highlighted. CONCLUSIONS: The study provides insights on what worked well and what required improvement in a pandemic response room. It can inform health services, particularly emergency services, in their preparation for additional COVID-19 waves, as well as future crises.

Development and psychometric validation of a questionnaire assessing the impact of tinnitus on significant others.

INTRODUCTION: Despite evidence showing that tinnitus can have a detrimental impact on significant others (SOs), no standardized self-reported measure is currently available that specifically assesses the presence of third-party disability for tinnitus. The aim of this study was to develop and assess the psychometric properties of a newly developed self-reported measure for SOs of tinnitus and assess how scores could be meaningfully interpreted. METHODS: The research consisted of two phases. During Phase I, the Consequences of Tinnitus on Significant Others Questionnaire (CTSOQ) was developed using the The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance. Phase II included the assessment of psychometric properties of the CTSOQ including the construct validity, internal consistency, interpretability, and responsiveness. Pairs of 194 individuals with tinnitus and their SOs completed a series of online questionnaires. SOs completed the CTSOQ measure while individuals with tinnitus completed measures related to tinnitus distress, anxiety, depression, insomnia, and quality of life. RESULTS: A 25 item CTSOQ was developed using a formative model. The questionnaire validation process indicated good psychometric properties with an internal consistency of 0.93 and inter-item correlation of 0.60. Support was found for the construct and discriminative validity of the measure. Floor and ceiling effects were negligible. Scores can be meaningfully interpreted to indicate mild, significant, or severe effect of tinnitus on SOs. The questionnaire was also found to be responsive to treatment-related changes. CONCLUSIONS: The CTSOQ was found to have sufficient measurement properties suggesting that it is a suitable measure of third-party disability for SOs of individuals with tinnitus. Further research should be initiated to measure face validity and what scores reflect clinically meaningful change.

Identifying priorities for the collection and use of data related to community first response and out-of-hospital cardiac arrest: protocol for a nominal group technique study.

Introduction: Out-of-hospital cardiac arrest (OHCA) is a devastating health event that affects over 2000 people each year in Ireland. Survival rate is low, but immediate intervention and initiation of cardiopulmonary resuscitation (CPR) and administration of an automated external defibrillator (AED) can increase chances of survival. It is not always possible for the emergency medical services (EMS) to reach OHCA cases quickly. As such, volunteers, including lay and professional responders (e.g. off-duty paramedics and fire-fighters), trained in CPR and AED use, are mobilised by the EMS to respond locally to prehospital medical emergencies (e.g. OHCA and stroke). This is known as community first response (CFR). Data on the impact of CFR interventions are limited. This research aims to identify the most important CFR data to collect and analyse, the most important uses of CFR data, as well as barriers and facilitators to data collection and use. This can inform policies to optimise the practice of CFR in Ireland. Methods: The nominal group technique (NGT) is a structured consensus process where key stakeholders (e.g. CFR volunteers, clinicians, EMS personnel, and patients/relatives) develop a set of prioritised recommendations. This study will employ the NGT, incorporating an online survey and online consensus meeting, to develop a priority list for the collection and use of CFR data in Ireland. Stakeholder responses will also identify barriers and facilitators to data collection and use, as well as indicators that improvements to these processes have been achieved. The maximum sample size for the NGT will be 20 participants to ensure sufficient representation from stakeholder groups. Discussion: This study, employing the NGT, will consult key stakeholders to establish CFR data collection, analysis, and use priorities. Results from this study will inform CFR research, practice, and policy, to improve the national CFR service model and inform international response programs.

Community first response and out-of-hospital cardiac arrest: a qualitative study of the views and experiences of international experts.

OBJECTIVES: This research aimed to examine the perspectives, experiences and practices of international experts in community first response: an intervention that entails the mobilisation of volunteers by the emergency medical services to respond to prehospital medical emergencies, particularly cardiac arrests, in their locality. DESIGN: This was a qualitative study in which semistructured interviews were conducted via teleconferencing. The data were analysed in accordance with an established thematic analysis procedure. SETTING: There were participants from 11 countries: UK, USA, Canada, Australia, New Zealand, Singapore, Ireland, Norway, Sweden, Denmark and the Netherlands. PARTICIPANTS: Sixteen individuals who held academic, clinical or managerial roles in the field of community first response were recruited. Maximum variation sampling targeted individuals who varied in terms of gender, occupation and country of employment. There were eight men and eight women. They included ambulance service chief executives, community first response programme managers and cardiac arrest registry managers. RESULTS: The findings provided insights on motivating and supporting community first response volunteers, as well as the impact of this intervention. First, volunteers can be motivated by 'bottom-up factors', particularly their characteristics or past experiences, as well as 'top-down factors', including culture and legislation. Second, providing ongoing support, especially feedback and psychological services, is considered important for maintaining volunteer well-being and engagement. Third, community first response can have a beneficial impact that extends not only to patients but also to their family, their community and to the volunteers themselves. CONCLUSIONS: The findings can inform the future development of community first response programmes, especially in terms of volunteer recruitment, training and support. The results also have implications for future research by highlighting that this intervention has important outcomes, beyond response times and patient survival, which should be measured, including the benefits for families, communities and volunteers.

Identifying the approaches used by audiologists to address the psychosocial needs of their adult clients.

OBJECTIVE: To identify the approaches taken by audiologists to address their adult clients' psychosocial needs related to hearing loss. DESIGN: A participatory mixed methods design. Participants generated statements describing the ways in which the psychosocial needs of their adult clients with hearing loss are addressed, and then grouped the statements into themes. Data were obtained using face-to-face and online structured questions. Concept mapping techniques were used to identify key concepts and to map each of the concepts relative to each other. STUDY SAMPLE: An international sample of 65 audiologists. RESULTS: Ninety-three statements were generated and grouped into seven conceptual clusters: Client Empowerment; Use of Strategies and Training to Personalise the Rehabilitation Program; Facilitating Peer and Other Professional Support; Providing Emotional Support; Improving Social Engagement with Technology; Including Communication Partners; and Promoting Client Responsibility. CONCLUSIONS: Audiologists employ a wide range of approaches in their attempt to address the psychosocial needs associated with hearing loss experienced by their adult clients. The approaches described were mostly informal and provided in a non-standardised way. The majority of approaches described were not evidence-based, despite the availability of several options that are evidence-based, thus highlighting the implementation gap between research and clinical practice.

Audiological approaches to address the psychosocial needs of adults with hearing loss: perceived benefit and likelihood of use.

OBJECTIVE: To explore the perceived benefit and likely implementation of approaches used by audiologists to address their adult clients' psychosocial needs related to hearing loss. DESIGN: Adults with hearing loss and audiologists completed separate, but related, surveys to rate their perceived benefit and also their likely use of 66 clinical approaches (divided over seven themes) that aim to address psychosocial needs related to hearing loss. STUDY SAMPLE: A sample of 52 Australian adults with hearing loss, and an international sample of 19 audiologists. RESULTS: Overall, participants rated all of the approaches highly on both benefit and likelihood of use; the highest ranked theme was Providing Emotional Support. Cohort comparisons showed that audiologists ranked the approaches significantly higher than did adults with hearing loss. Overall, participants ranked the themes higher on benefit than on the likelihood to use scales. CONCLUSIONS: Adults with hearing loss and audiologists recognise the importance of approaches that address the psychosocial impacts of hearing loss in audiological rehabilitation. However, both groups placed slightly greater value on the internal-based approaches (the clients own emotional response, empowerment, and responsibility), and slightly less emphasis on the external-based approaches (being supported by communication partners, support groups or other health professionals).

Application of Rasch Analysis to the Evaluation of the Measurement Properties of the Hearing Handicap Inventory for the Elderly.

OBJECTIVES: The aim of this research was to evaluate the measurement properties of the Hearing Handicap Inventory for the Elderly (HHIE). The HHIE is one of the most widely used patient-reported outcome measures in audiology. It was originally developed in the United States in the 1980s as a measure of the social and emotional impact of hearing loss in older adults. It contains 25 items that are accompanied by a 3-point response scale. To date, the measurement properties of the HHIE have primarily been assessed via traditional psychometric analysis techniques (e.g., Cronbach's alpha and Principal Components Analysis). However, traditional techniques are now known to have several limitations in comparison to more modern approaches. Therefore, this research used a modern psychometric analysis technique, namely Rasch analysis, to evaluate the HHIE. DESIGN: Rasch analysis was performed on HHIE data collected from 380 adults with hearing loss. The participants were principally recruited from the participant database of the National Institute for Health Research Nottingham Biomedical Research Centre in the United Kingdom. Additional participants were recruited from two UK audiology clinics and the online forum of a UK hearing loss charity. Rasch analysis was used to assess the measurement properties of the HHIE (i.e., fit to the Rasch model, unidimensionality, targeting, and person separation reliability) and its individual items (i.e., response dependency, fit, Differential Item Functioning, and threshold ordering). RESULTS: The HHIE was found to have several strong measurement properties. Specifically, it was well-targeted and had high person separation reliability. However, it displayed poor fit to the Rasch model and was not unidimensional. The majority of the items were free of response dependency (i.e., redundancy) and were suited to the 3-point response scale. However, two items were found to be better suited to a dichotomous response scale. Furthermore, nine items were identified as being candidates for removal from the questionnaire, as they exhibited poor fit and/or Differential Item Functioning (i.e., item bias) associated with gender. The measurement properties of the HHIE could be improved by removing these items and adjusting the scores of the two items that require a dichotomous response scale. These amendments resulted in a 16-item version of the HHIE that had good fit to the Rasch model and that was unidimensional. CONCLUSIONS: It is vital to ensure that high-quality outcome measures are used in audiology research and practice. This study evaluated one of the foremost outcome measures in this field: the HHIE. The results demonstrated that the HHIE had several strong measurement properties. Amending the HHIE, such as by removing items exhibiting poor fit, could further enhance its quality. A unique aspect of this study was the application of Rasch analysis to the evaluation of the HHIE. It is recommended that future studies use modern techniques to develop and identify high-quality, hearing-specific outcome measures.

Rapid response and learning for later: establishing high quality information networks and evaluation frameworks for the National Ambulance Service response to COVID-19 - the ENCORE COVID Project Protocol.

Background: The National Ambulance Service (NAS) is at the forefront of Ireland's response to the COVID-19 pandemic. As directed in Ireland's National Action Plan, NAS significantly expanded prehospital services, including provision of a novel COVID-19 testing service. Additionally, other health services rely on NAS's capacity to assess, transport and/or treat COVID-19 patients. In a climate of innovation and adaptation, NAS needs to learn from international ambulance services and share experience. Evaluation of the NAS response to COVID-19 is required to facilitate evidence-based planning for subsequent waves or future pandemics, and to identify innovative practice for mainstreaming into routine service provision. Aims: This project aims to test the utility of novel information networks and develop a tool that is tailored to evaluating pandemic-imposed change in an emergency medical service. Methods: The first aim will be to introduce and measure the impact of ambulance-specific research and information updates for NAS. Secondly, the usefulness to members of an international network of senior ambulance and research personnel ('AMBULANCE+COVID19' network), and the clarity and feasibility of a short-survey instrument, the Emergency Medical Services Five Question Survey (EMS-5QS), will be assessed. Finally, an evaluation framework for assessing pandemic-imposed change will be developed to enable NAS determine innovations: (1) for reactivation in another wave or new pandemic; (2) to be sustained as part of routine service. The framework will be developed in collaboration with NAS and the National Quality Improvement Team. The Research Team includes expertise from academia, ambulance services and the National Public Health Emergency Team. Conclusions: This project will facilitate the prompt introduction of information sharing processes to an emergency medical service and assess the impact of those processes. By developing a process for evaluating pandemic-imposed change in NAS, this project will add to the toolbox for future pandemic planning in emergency medical services internationally.

How Do We Know That Our Patients Have Benefitted From Our ENT/Audiological Interventions? Presented at the Annual Meeting of ADANO 2016 in Berlin.

: This short review article gives an introduction to some of the fundamental concepts and challenges facing measurement in hearing healthcare practice and research. The impact of hearing loss almost always extends beyond the sensory impairment itself, even when the measured degree of audiometric loss is mild. Yet, going beyond audibility, into the realm of measuring impact, takes us into a much more complex and less well-defined space. How does one therefore best measure the therapeutic benefit for evaluating efficacy or for clinical practice audit? Three case studies illustrate approaches to overcome such challenges. Each example highlights the importance of thinking critically about what it is one is seeking trying to measure, rather than selecting a questionnaire instrument based simply on its popularity or accessibility. We conclude by highlighting the important role that clinicians can play in collecting clinical data about their preferred instruments so that we have some evidence to inform decisions about good practice (content validity etc.). We would also strongly support open data sharing as we think that this is one of the best ways to make the most rapid progress the field.

Evidence-Based Interventions for Adult Aural Rehabilitation: That Was Then, This Is Now.

More than a decade after Arthur Boothroyd published "Adult Aural Rehabilitation: What Is It and Does It Work?," the four cornerstones of adult aural rehabilitation are re-examined in terms of research that we and others in the field have undertaken. The focus is on novel advances in high-quality research relating to interventions to support self-management for hearing aids and other listening devices (sensory management), knowledge and skill (instruction), auditory and cognitive training (perceptual training), and motivational engagement (counseling). Much of this new research has a theoretical underpinning (e.g., behavior change theory) to better guide the development and evaluation of interventions, with a focus on self-management and patient-centered approaches. New and emerging technologies that support e- and m-health delivery of interventions provide greater personalization and interactivity to promote self-management of hearing loss. Looking to the future, there remains a requirement for a set of relevant and appropriate outcome measures to evaluate the effectiveness of interventions trialed in clinical studies. There is a continuing need for high-quality evidence, underpinned by contemporary theory, to increase the likelihood that translational adult aural rehabilitation research that aims to benefit patients will be applied in future clinical practice.

Evaluation of the psychometric properties of the social isolation measure (SIM) in adults with hearing loss.

OBJECTIVE: This study aimed to evaluate the psychometric properties of a brief, hearing-specific outcome measure: the Social Isolation Measure (SIM). DESIGN: In Phase 1, adults with hearing loss were invited to complete an online survey that contained the SIM, a hearing-specific participation questionnaire, a generic activity and participation questionnaire, and a generic loneliness questionnaire. In Phase 2, the participants were asked to complete the SIM for a second time 2-3 weeks following Phase 1. STUDY SAMPLE: One hundred and sixteen adults with hearing loss completed Phase 1. Ninety-five participants also completed Phase 2. Twenty-nine participants were excluded from the Phase 2 data analysis because they reported that their hearing had changed since Phase 1 or because they completed Phase 2 outside of the 2-3 week interval following Phase 1. RESULTS: In support of its construct validity, the SIM had a strong correlation with the hearing-specific questionnaire and moderate correlations with the generic questionnaires. The findings also supported the internal consistency, interpretability and test-retest reliability of the SIM. CONCLUSIONS: The SIM was found to have strong psychometric properties. It could serve as a brief measure of perceived social isolation in research or clinical practice.

Refinement and Validation of the Social Participation Restrictions Questionnaire: An Application of Rasch Analysis and Traditional Psychometric Analysis Techniques.

OBJECTIVES: The primary aim of this research was to refine and validate the Social Participation Restrictions Questionnaire (SPaRQ). The SPaRQ is a hearing-specific, patient-reported outcome measure that was originally developed through consultation with adults with hearing loss, clinicians, and researchers. This research comprised two studies. Study 1 aimed to assess the psychometric properties of the SPaRQ and to improve these properties by amending the questionnaire (e.g., removing items) as required. Study 2 aimed to validate the refined SPaRQ. DESIGN: In study 1, 279 adults with hearing loss completed a long-form, 53-item SPaRQ. Rasch analysis, a modern psychometric analysis technique, was used to assess a range of psychometric properties for the questionnaire (e.g., unidimensionality, fit to the Rasch model). The properties of the individual items were also assessed (e.g., response dependency, differential item functioning). In study 2, 102 adults with hearing loss completed the refined SPaRQ. In addition, they completed three questionnaires that had been designed to measure related constructs. These were a hearing-specific questionnaire (Hearing Handicap Inventory for the Elderly), a generic health and disability questionnaire (shortened World Health Organization Disability Assessment Schedule 2.0), and a brief depression and anxiety screening questionnaire (Patient Health Questionnaire-4). Traditional psychometric analysis techniques (e.g., Cronbach's alpha) were used to assess the construct validity and internal consistency of the refined SPaRQ. RESULTS: Rasch analysis was used to refine the SPaRQ. The result was a 19-item measure divided into two subscales. The 9-item Social Behaviors subscale measured difficulties with performing actions in a social context due to hearing loss. The 10-item Social Perceptions subscale measured negative thoughts and feelings experienced in a social context due to hearing loss. Both Rasch analysis and the traditional psychometric analysis techniques demonstrated that each subscale had strong psychometric properties. In particular, each subscale passed the test of unidimensionality, displayed good fit to the Rasch model, and had high internal consistency. In addition, it was found that, as predicted, each subscale had strong, positive correlations with the hearing-specific questionnaire and moderate, positive correlations with the generic health and disability questionnaire and the depression and anxiety screening questionnaire. Taken together, these findings support the construct validity of the 19-item SPaRQ. CONCLUSIONS: This was one of the first studies to devise a new hearing-specific outcome measure using Rasch analysis. Rasch analysis proved to be a powerful technique for supporting decisions regarding which items to retain in order to achieve a psychometrically robust questionnaire. Additional support for the robustness of this questionnaire came from the utilization of traditional psychometric analysis techniques. Therefore, this questionnaire has the potential to be used in research and clinical practice to evaluate whether auditory rehabilitation interventions improve social participation in adults with hearing loss. The next stage of this research will be to further validate this questionnaire by assessing its responsiveness in a clinical population. The combined use of modern and traditional psychometric analysis techniques should be considered in future questionnaire development and validation research.

Factors that motivate individuals to volunteer to be dispatched as first responders in the event of a medical emergency: A systematic review protocol.

Background: Voluntary First Response is an important component of prehospital care for medical emergencies, particularly cardiac arrest, in many countries. This intervention entails the mobilisation of volunteers, known as Community First Responders (CFRs), by the Emergency Medical Services to respond to medical emergencies in their locality. They include lay responders and/or professional responders (e.g. police officers, fire fighters, and general practitioners). A wide variety of factors are thought to motivate CFRs to join and remain engaged in Voluntary First Response schemes, such as the availability of learning opportunities, recognition, counselling, and leadership. The aim of this review is to develop an in-depth understanding of CFR motivation, including the factors that influence the initial decision to volunteer as a CFR and the factors that sustain involvement in Voluntary First Response over time. Any factors relevant to CFR de-motivation and turnover will also be examined. Methods: This is a protocol for a qualitative systematic review of the factors that influence the motivation of individuals to participate in Voluntary First Response. A systematic search will be carried out on seven electronic databases. Qualitative studies, mixed-methods studies, and any other studies producing data relating to the review question will be eligible for inclusion. Title and abstract screening, as well as full text screening, will be completed independently by two authors. A narrative synthesis, which is an established qualitative synthesis methodology, will be performed. The quality of each of the included studies will be critically appraised. Discussion: The findings of this review will be used to optimise the intervention of Voluntary First Response. Specifically, the results will inform the design and organisation of Voluntary First Response schemes, including their recruitment, training, and psychological support processes. This could benefit a range of stakeholders, including CFRs, paramedics, emergency physicians, patients, and the public.

Recruiting and retaining participants in e-Delphi surveys for core outcome set development: Evaluating the COMiT'ID study.

BACKGROUND: A Core Outcome Set (COS) is an agreed list of outcomes that are measured and reported in all clinical trials for a particular health condition. An 'e-Delphi' is an increasingly popular method for developing a COS whereby stakeholders are consulted via a multi-round online survey to reach agreement regarding the most important outcomes. Many COS studies seek diverse, international input that includes professionals and healthcare users. However, the recruitment and retention of participants can be deterred by various factors (e.g. language barriers and iterative, time-consuming rounds). This report evaluates the effectiveness of recruitment and retention methods used in the Core Outcome Measures in Tinnitus International Delphi (COMiT'ID) study using participant feedback from healthcare users, healthcare practitioners, researchers, commercial representatives and funders. METHODS: A range of methods were applied to recruit participants to the study and maintain engagement over the three rounds. Feedback on recruitment and retention methods was collected using a twenty-item online questionnaire, with free text comments. RESULTS: A personalised email invitation was the most frequent recruitment route, and 719 professionals and healthcare users consented to take part. Retention of each stakeholder group ranged from 76 to 91% completing all three e-Delphi rounds. Feedback was given by 379 respondents. A majority of respondents were satisfied with the study methods that were implemented to promote retention. Over 55% indicated that their overall experience closely matched their expectations at the start of the study, and over 90% felt that their contribution was appreciated. CONCLUSIONS: This report highlights study methods that worked well with respect to recruitment and retention, and those that did not. Findings provide a unique contribution to the growing evidence base of good practice in COS development by demonstrating the relative effectiveness of recruitment and retention methods for an e-Delphi survey. TRIAL REGISTRATION: This project was registered (November 2014) in the database of the Core Outcome Measures in Effectiveness Trials (COMET) initiative. The protocol is published in Trials (doi:10.1186/s13063-017-2123-0).