Research Questions Research Articles

The Digital Atlas of Ancient Rare Diseases (DAARD) and its relevance for current research

BackgroundThe history of rare diseases is largely unknown. Research on this topic has focused on individual cases of prominent (historical) individuals and artistic (e.g., iconographic) representations. Medical collections include large numbers of specimens that exhibit signs of rare diseases, but most of them date to relatively recent periods. However, cases of rare diseases detected in mummies and skeletal remains derived from archaeological excavations have also been recorded. Nevertheless, this direct evidence from historical and archaeological contexts is mainly absent from academic discourse and generally not consulted in medical research on rare diseases.ResultsThis desideratum is addressed by the Digital Atlas of Ancient Rare Diseases (DAARD: https://daard.dainst.org), which is an open access/open data database and web-based mapping tool that collects evidence of different rare diseases found in skeletons and mummies globally and throughout all historic and prehistoric time periods. This easily searchable database allows queries by diagnosis, the preservation level of human remains, research methodology, place of curation and publications. In this manuscript, the design and functionality of the DAARD are illustrated using examples of achondroplasia and other types of stunted growth.ConclusionsAs an open, collaborative repository for collecting, mapping and querying well-structured medical data on individuals from ancient times, the DAARD opens new avenues of research. Over time, the number of rare diseases will increase through the addition of new cases from varied backgrounds such as museum collections and archaeological excavations. Depending on the research question, phenotypic or genetic information can be retrieved, as well as information on the general occurrence of a rare disease in selected space–time intervals. Furthermore, for individuals diagnosed with a rare disease, this approach can help them to build identity and reveal an aspect of their condition they might not have been aware of. Thus, the DAARD contributes to the understanding of rare diseases from a long-term perspective and adds to the latest medical research.

A colossus on clay feet? Mechanisms of inertia in civil-military collaboration within the context of Swedish total defense

ABSTRACT The study examines Sweden’s strategy for total defense, emphasizing inter-sectoral collaboration at the regional level. Specifically, it aims to identify potential challenges in such collaboration, leading to the following overarching research question: What are the principal challenges linked to cross-sector collaboration within Sweden’s total defense strategy at the regional level. The study is based on interviews and observations from various collaborative exercises. Six participants from different organizations specializing in total defense collaboration were interviewed. In addition to interviews, six observations were conducted during different collaborative exercises, each resulting in field notes forming the basis for analysis. Data collection took place between August 2022 and October 2023. The analysis of collected data identifies three overarching themes – inability, unwillingness, and lack of synchronization – depicting the challenges of collaboration in total defense. These themes intertwine and construct a complex situation, described as “a colossus on clay feet,” referring to various mechanisms of inertia in civil-military collaboration. The study concludes that the identified themes pose significant theoretical challenges, suggesting inherent vulnerabilities in the concept that may impede its effectiveness, with the most concerning aspect being the inability to address fundamental problems even amidst increased resources and determination, necessitating a focused research direction to tackle these dilemmas.

Oocyte donors' experience and expectations in a non-profit fertility care setting.

In this survey, we aimed to provide the description of previous oocyte donors' profile in a Belgian tertiary fertility hospital clinic. The research question is as follows: could certain aspects be changed or improved, according to previous oocyte donors? The final purpose is to boost adherence to future oocyte donation (OD) programs, given the large gap between supply and demand. We set up an observational cross-sectional study of oocyte donors who were recruited in a tertiary referral hospital. Participants were asked to join an anonymous online survey with questions about demographic and reproductive variables, reasons to start or discontinue OD, satisfaction rate, experience, and attitude towards presumed anonymity. A total of 218 women were eligible to join the study, with a response rate of 49% (108/218). The emerging profile of the oocyte donor is a well-educated (102/108 with at least a high school degree), employed (86/108) woman in her thirties. Altruism and solidarity were the main drivers of their choice (105/108), and a general permissive attitude towards disclosure of their personal information to the recipient (60/108) was registered. In case of negative experience or discontinuation, concerns regarding pain management and specific long-lasting psychological support were expressed (8/20). Our findings suggest the need to improve pain relief and to offer psychological support even beyond ending the donation process. These interventions could improve both participation and adherence to OD programs, ensuring an autonomous and free choice while avoiding any risk of exploitation.

Patient preferences for teleradiology services and remote image interpretation: An empirical study.

This study aims to examine patient preferences for teleradiology services and remote image interpretation. In this context, this study aims to address the following research questions: (i) How do patients perceive teleradiology services, focusing specifically on comfort, quality of care and satisfaction, communication and information, and accessibility and ease of use; (ii) How do patient demographics (age, gender, urban vs. rural residence) influence the perceptions on teleradiology services? A cross-sectional survey design is adopted in this study. The survey comprises five sections targeting demographic information, comfort, and preferences regarding remote image interpretation, perceived quality of care and satisfaction, communication and information clarity, and accessibility and technology aspects using five-point Likert scale ratings. A total of 406 patients (209 males and 197 females; 170 urban residents; 174 semi-urban residents, and 62 rural residents) using teleradiology services participated in the study. Participants reported high satisfaction with remote image interpretation (3.78 ± 1.19), quality of care (3.31 ± 1.19), understanding (3.84 ± 1.43), and user-friendliness (3.67 ± 1.29). Key issues were technical problems (3.81 ± 1.35), feedback difficulties (3.19 ± 1.58), privacy concerns (2.43 ± 1.46), and low awareness (2.37 ± 1.12). Urban participants scored significantly better in comfort, preferences, and communication than those from semi-urban and rural areas. Teleradiology design and implementation should be optimized to align with patient preferences and enhance overall satisfaction.

How funding scarcity and ineffective governance tools inhibit urban greenspace provision: An exploration of municipal greenspace managers’ insights

Local government is at the forefront of providing communities with urban greenspace, amidst responding to global challenges of climate change, biodiversity loss and population growth. Much research has focused on the demands for more urban greenspace; far less has examined issues concerning supply. Better understanding of the dilemmas faced by those charged with the task of providing urban greenspace at the city scale can help policymakers, planners, and aligned professions ensure that municipal resources are appropriately and justly allocated. We aim to address this gap, answering two research questions: 1) what factors shape urban greenspace provision, and 2) how do these factors manifest differently for municipalities of Australia and New Zealand? We surveyed 82 local government officers/officials from mid-size municipalities of nine Anglophone countries about their experience providing municipal greenspace. We expose some of the experiences, challenges, and emerging issues facing contemporary municipal greenspace providers globally, including the drivers and barriers to urban greenspace provision. Findings reveal the complexities of supplying urban greenspace, shaped by multiple factors. While funding, community expectations, and governance tools, are the main factors, funding is the main barrier to providing urban greenspace globally. Moreover, almost all other factors affect availability of sufficient funding. Key differences for Australia and New Zealand reveal a broadening conceptualisation of the purpose of parks: more so multi-purpose than primarily sport and recreation. Revealing challenges greenspace managers face in delivering adequate urban greenspace and facilities, these findings question the efficacy of the current planning approaches embedded in planning legislation, municipal greenspace plans and strategies.

Shortest path or random walks? A framework for path weights in network meta-analysis.

Quantifying the contributions, or weights, of comparisons or single studies to the estimates in a network meta-analysis (NMA) is an active area of research. We extend this work to include the contributions of paths of evidence. We present a general framework, based on the path-design matrix, that describes the problem of finding path contributions as a linear equation. The resulting solutions may have negative coefficients. We show that two known approaches, called shortestpath and randomwalk, are special solutions of this equation, and both meet an optimization criterion, as they minimize the sum of absolute path contributions. In general, there is an infinite set of solutions, which can be identified using the generalized inverse (Moore-Penrose pseudoinverse). We consider two further special approaches. For large networks we find that shortestpath is superior with respect to run time and variability, compared to the other approaches, and is thus recommended in practice. The path-weights framework also has the potential to answer more general research questions in NMA.

Levers and obstacles for implementing public engagement practices in Energy Grid Development

The scale of change required through the development of new energy infrastructure throughout Europe is vast. The societal dimensions of the energy transition are increasingly recognised as centrally important and approaches to infrastructure development which seek to incorporate such considerations are warranted. EirGrid - Ireland’s national electricity transmission operator - through their own historical context, have undergone a journey to develop new strategies for citizen and community engagement with relation to energy grid developments.Here, we reflect upon this journey, situating it within their previous failures and the national context. This process of reflective practice seeks to provide findings for other organisations internationally undertaking a journey towards establishing new engagement practices. The establishment of such practices is critical for enabling deeper societal engagement on the energy transition. A research gap exists in relation to the organisational development of new public engagement practices within institutions tasked with developing infrastructure associated with the energy transition. This creates a challenge whereby ever-increasing calls for public engagement are made, but no lessons exist with relation to how such new practices can be embedded within an organisational strategy. We contribute to this space through answering the research question: what are the key levers and barriers for organisation change towards new forms of public engagement in infrastructure delivery?The reflections outlined through this paper have been provided by individuals in different positions across the organisation. The paper develops key findings which add to the literature in relation to levers and obstacles for implementing public engagement and associated factors.

A web experience exploring spatio–linguistic data: the case of place-making signs in Northern Sweden

ABSTRACT Previous research has highlighted the limitations encountered in representing the dynamism of language use and contacts. Here, linguistic landscapes from five towns in Northern Sweden are the point of departure for investigating novel perspectives through the geovisualization of multilingualism, with the ultimate aim of understanding how languages in our surroundings help construct public spaces. As an outcome, a web GIS application, based on 6865 thematically analyzed photographs, was developed as an interactive resource for visualizing and sharing the data and enabling new modes of analysis and new research questions. The article describes the data collection and curation processes, app development using GIS software and software-as-a-service, the eventual app design and interaction, and the update and maintenance plans, as well as discussing challenges and considerations related to temporalities, spatialities, and technicalities. The web GIS has potential applications in spatial analysis, research communication, and education.

Lighting the way: Compelling open questions in photosynthesis research.

Photosynthesis - the conversion of energy from sunlight into chemical energy - is essential for life on Earth. Yet there is much we do not understand about photosynthetic energy conversion on a fundamental level: how it evolved and the extent of its diversity, its dynamics, and all the components and connections involved in its regulation. In this commentary, researchers working on fundamental aspects of photosynthesis including the light-dependent reactions, photorespiration, and C4 photosynthetic metabolism pose and discuss what they view as the most compelling open questions in their areas of research.

Cognitive issues of mobile map design and use

ABSTRACT Internet-connected mobile devices have changed how people access information. Like other information sources, maps have benefited from and been re-envisioned for mobile devices, and they are used in new contexts. However, these new contexts often generate additional cognitive load. We explored in depth two strategies designers could use to mitigate high cognitive loads associated with mobile map use: offloading cognition and reducing cognitive load by improved design to support the allocation of attention between the map and the environment. In reviewing these strategies, we considered their relevance to several mobile map use cases (navigation, individual and collaborative spatial decision making, information enrichment, and entertainment). Next, we identified recent progress in our understanding of how to measure cognitive load and map use context. Finally, we explored the wider implications of mobile maps for human behaviour and cognition. We identified two important cross-cutting research questions: 1) How can mobile maps be designed to reduce cognitive load by providing what is really needed by users to facilitate their cognitive processes?; 2) How can the intrinsic additional cognitive load created by the characteristics of mobile maps be managed and minimised by supporting the distribution of the user's attention between the map and environment?

Exploring constructions of female surgeons’ intersecting identities and their impacts: a qualitative interview study with clinicians and patients in Ireland and Scotland

IntroductionWhile many studies have explored surgeons’ personal and professional identities separately, our study is the first to examine intersecting female surgical identities. We explore intersecting surgical identities constructed by self and others (colleagues and patients) within two healthcare systems and their perceived impacts answering the research question: How do female surgeons’ constructed identities intersect, and what influences do those intersections have on their surgical lives?MethodsWe employed qualitative methodology drawing on semi-structured biographical narrative interviews underpinned by social constructionism. We employed intersectionality theory as an analytical lens. We adopted maximum variation sampling to identify diverse participants, including 38 surgeons (29 female; 9 male), 9 non-surgical colleagues (8 female, 1 male), and 13 patients of female surgeons (7 female, 6 male). Our 29 female surgeons also included six who had transitioned out of surgery. We analyzed the dataset using a five-step Framework Analysis approach. We captured talk about identities, as well as identity talk (constructions of identity through participants’ talk).FindingsMultiple intersecting personal (not just gender) and professional identities were constructed and reported to have multiple impacts on female surgeons’ lives (including their education, training, and success). We present intersecting identities and their impacts relating to gender through four primary intersections: (a) gender + ethnic identities; (b) gender + parenthood identities; (c) gender + age identities; and (d) gender + professional identities (namely carer, competent, mentor/mentee, role model and leader). Our findings particularly highlight the challenges experienced by female surgeons of color, who are mothers, who are younger and/or who are leaders, illustrating diversity in women’s experiences beyond that of gender alone. Finally, we found unexpected insights into male surgeons and fatherhood.DiscussionIntersectionality theory offered a novel analytical lens to extend existing knowledge on female surgical identities. Further research is warranted exploring intersecting identities of female surgeons of color, younger female surgeons, and male surgeons who are fathers, as well as identities unexplored in this study (e.g., diverse sexualities). We need to raise awareness of intersecting identities and their impacts in surgery, as well as providing training, allyship, and policy revision that is sensitive to intersectionality.

Long-Term Benefits of Photobiomodulation Therapy on Health-Related Quality of Life in Burning Mouth Syndrome Patients: A Prospective Study

Background/Objectives: Burning Mouth Syndrome (BMS) patients experience a reduction in health-related quality of life and an increased intake of medication. Photobiomodulation with low-level laser therapy has been demonstrated to be an efficacious treatment for BMS. However, its long-term benefits remain relatively unknown. This study aimed to evaluate the impact of prolonged Photobiomodulation with low-level laser therapy on BMS patients by examining the efficacy of an outpatient protocol in a real-world setting. Methods: A prospective study was designed to address the research question. Photobiomodulation was performed, irradiating the affected areas once every two weeks for 12 months. Health-related quality of life was assessed using the EQ-5D-5L questionnaire at the initial consultation and after 6 months and 12 months of treatment. Additionally, the patients’ pharmacological profile was also monitored. Nonparametric statistical analysis was performed (p < 0.05 was considered statistically significant). Results: The study was completed by 15 individuals, comprising 14 females and 1 male. The results indicated a statistically significant improvement (p < 0.001) in four of the five dimensions of the health-related quality of life questionnaire, namely self-care, usual activities, pain/discomfort, and anxiety/depression, along with the patients’ perceived health level. A total of 13 participants reported suspending or reducing their intake of medications for Burning Mouth Syndrome. Conclusions: Therefore, Photobiomodulation with low-level laser therapy has a positive effect on improving patients’ quality of life and reducing BMS symptoms, contributing to a subsequent reduction or suspension of previous medications. These findings support the efficacy of the applied protocol. Given the innovative methodology and promising results, further research is warranted.

Understanding the role of surgical intervention for patients with concomitant degenerative spinal disease without deformity and Parkinson’s disease: a meta-analysis

Introduction Parkinson’s disease is a common neurodegenerative disease. With an aging population, co-existent degenerative diseases of the spine in these patients will become more prevalent. Research Question This systematic review and meta-analysis aims to establish the incidence and risk of adverse outcomes following spinal surgery in patients with Parkinson’s disease. Material and Methods A literature review was carried out in order to identify studies assessing the outcomes of adult patients with Parkinson’s disease undergoing spinal surgery for degenerative conditions. Studies with less than ten subjects or those assessing surgery for spinal deformity or trauma were excluded. Results Of 74 studies identified, seven were included for meta-analysis. In the 689,578 participants, there was a significantly higher incidence, but not higher risk, of complications (0.54 95% CI [0.19–0.85] vs 0.07 95% CI [0.01–0.41]; p = 0.048) and revision surgery (0.6 95% CI [0.25–0.88] vs 0.1 95% CI [0.05–0.19]; p = 0.003) amongst patients with Parkinson’s disease compared to controls. We also demonstrated a significantly lower incidence but not lower risk of clinical improvement (0.27 95% CI [0.16–0.41] vs 0.57 95% CI [0.36–0.76]; p = 0.02) after surgery in patients with Parkinson’s disease. There was no difference in the incidence or risk of death following surgery. Discussion and Conclusion Spinal surgery for concomitant degenerative diseases in patients with Parkinson’s disease is associated with a lower incidence of clinical improvement and a higher incidence of complications. Medical management should be optimised before an individually tailored and well-considered surgical intervention is implemented.

Sensorimotor Challenges in Minimally Invasive Surgery: A Theoretically-Oriented Review.

This review surveys the literature on sensorimotor challenges impacting performance in laparoscopic minimally invasive surgery (MIS). Despite its well-known benefits for patients, achieving proficiency in MIS can be challenging for surgeons due to many factors including altered visual perspectives and fulcrum effects in instrument handling. Research on these and other sensorimotor challenges has been hindered by imprecise terminology and the lack of a unified theoretical framework to guide research questions in the field. We conducted a systematic survey of the MIS literature, focusing on studies investigating sensorimotor challenges affecting laparoscopic performance. To provide a common foundation for cross-study comparisons, we propose a standardized taxonomy that distinguishes between different experimental paradigms used in the literature. We then show how the computational motor learning perspective provides a unifying theoretical framework for the field that can facilitate progress and motivate future research along clearer, hypothesis-driven lines. The survey identified diverse sensorimotor perturbations in MIS, which can be effectively categorized according to our proposed taxonomy. Studies investigating monitor-, camera-, and tool-based perturbations were systematically analyzed, elucidating their impact on surgical performance. We also show how the computational motor learning perspective provides deeper insights and potential strategies to mitigate challenges. Sensorimotor challenges significantly impact MIS, necessitating a systematic, empirically informed approach. Our proposed taxonomy and theoretical framework shed light on the complexities involved, paving the way for more structured research and targeted training approaches to enhance surgical proficiency. Understanding the sensorimotor challenges inherent to MIS can guide the design of improved training curricula and inform the configuration of setups in the operating room to enhance surgeon performance and ultimately patient outcomes. This review offers key insights for surgeons, educators, and researchers in surgical performance and technology development.

On Dealing with Minima at the Border of a Simplicial Feasible Area in Simplicial Branch and Bound

AbstractWe consider a simplicial branch and bound Global Optimization algorithm, where the search region is a simplex. Apart from using longest edge bisection, a simplicial partition set can be reduced due to monotonicity of the objective function. If there is a direction in which the objective function is monotone over a simplex, depending on whether the facets that may contain the minimum are at the border of the search region, we can remove the simplex completely, or reduce it to some of its border facets. Our research question deals with finding monotone directions and labeling facets of a simplex as border after longest edge bisection and reduction due to monotonicity. Experimental results are shown over a set of global optimization problems where the feasible set is defined as a simplex, and a global minimum point is located at a face of the simplicial feasible area.

Artificial intelligence in total and unicompartmental knee arthroplasty

The application of Artificial intelligence (AI) and machine learning (ML) tools in total (TKA) and unicompartmental knee arthroplasty (UKA) emerges with the potential to improve patient-centered decision-making and outcome prediction in orthopedics, as ML algorithms can generate patient-specific risk models. This review aims to evaluate the potential of the application of AI/ML models in the prediction of TKA outcomes and the identification of populations at risk.An extensive search in the following databases: MEDLINE, Scopus, Cinahl, Google Scholar, and EMBASE was conducted using the PIOS approach to formulate the research question. The PRISMA guideline was used for reporting the evidence of the data extracted. A modified eight-item MINORS checklist was employed for the quality assessment. The databases were screened from the inception to June 2022.Forty-four out of the 542 initially selected articles were eligible for the data analysis; 5 further articles were identified and added to the review from the PUBMED database, for a total of 49 articles included. A total of 2,595,780 patients were identified, with an overall average age of the patients of 70.2 years ± 7.9 years old. The five most common AI/ML models identified in the selected articles were: RF, in 38.77% of studies; GBM, in 36.73% of studies; ANN in 34.7% of articles; LR, in 32.65%; SVM in 26.53% of articles.This systematic review evaluated the possible uses of AI/ML models in TKA, highlighting their potential to lead to more accurate predictions, less time-consuming data processing, and improved decision-making, all while minimizing user input bias to provide risk-based patient-specific care.

Artists on Climate Change: Their Intended Impact and Audiences

There is a high interest in art's change potential towards sustainability. Yet, there is still a lot unknown about this change potential, including from the perspective of artists themselves. The research questions, thus, are: Do artists who create climate-related art have goals and target audiences regarding their climate-related work? If so, which goals and audiences do they aim for, and why? 30 interviews with artists having been born or living in the United Kingdom, United States of America or Germany were conducted and analyzed. A framework of eco-social change was applied to the interview transcripts, and artists’ goals and audiences were analyzed through thematic analysis. The research finds that artists have a desire for societal impact and wider audiences, but some also have narrower audiences and smaller changes in mind. Moreover, some artists engage in an impact reflexivity about not only the potential but also the limits of their practice.

“I want kids to have the same feeling as I do towards physical activity”: Acculturation of British preservice physical education teachers

The purpose of this study was to describe the acculturation of six British physical education (PE) preservice teachers (PSTs). The research questions we sought to answer were: (a) What were the PSTs’ values, beliefs, and perspectives regarding PE? and (b) What factors shaped the PSTs’ values, beliefs, and perspectives during their acculturation? We collected data with three types of formal interviewing and employed standard interpretive techniques to reduce the data to themes. Key findings were that the PSTs aspired to a career teaching secondary PE, possessed a balanced orientation to teaching curricular PE and coaching extracurricular sport, and espoused a mostly traditional multi-activity curriculum that was dominated by sport. The main attractors to a career in PE were the opportunity to maintain a connection with sport and working with youth. The key shaper of the PSTs’ perspectives was their apprenticeships of observation. These findings should aid sport pedagogy faculty in their efforts to produce stronger initial teacher education programs.

The good death: The interplay between group dynamics, end of life decision making, and creative consumption

Background Although death is a primary motivator of behavior, it is not widely studied in marketing. Focus of the Article Through case analysis, integration of literature, and in-depth interviews of terminally ill patients, we explore the factors that change the consumption of medical treatment and the social issues that arise between themselves and other key stakeholders. Research Question What variables impact the decision-making process of terminally ill patients who choose to use an illegal treatment option? Program Design/Approach We explore the factors influencing consumption practices at the end of life through case analysis, literature integration, and in-depth interviews of terminally ill patients. Importance to Social Marketing Field This research gives social marketers a rare glimpse into the mind of the consumer at a pivotal moment of consumption end-of-life. Our exploration shows that when the conventional medical system fails, medical consumers engage in creative consumption patterns. Understanding these patterns allows social marketers to better understand and engage with terminally or chronically ill consumers. Methods This is a qualitative study using in-depth interviews. Results This study found that having an intimate relationship with mortality eliminates or weakens the constraints of cultural institutions and social groups as a part of the decision-making process.

PROTOCOL: Mindfulness-based interventions for improving tic-related symptoms in children and adults with chronic tic disorder and Tourette's disorder: A systematic review.

This is a protocol for a Cochrane Review (prototype). The objectives are as follows: This systematic review aims to summarize the available scientific literature on the effect of mindfulness-based approaches in children and adults with Chronic Tic Disorder (CTD) or Tourette Disorder (TD). More specifically, the research question is: What is the effectiveness of mindfulness-based interventions in reducing tic severity and improving overall functioning, quality of life, and co-occurring symptoms in children and adults with CTD or TD?