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6. Life after meningitis: a qualitative study exploring survivors’ experience of living with sequelae.

Author

Balint, Chris, Deary, Vincent, and Rodrigues, Angela M.

Subjects
*MENINGITIS, *DISEASE complications, *PSYCHOLOGICAL factors, *QUALITATIVE research, *PSYCHOLOGICAL research
Abstract

AbstractBackgroundObjectiveMethods and measuresResultsConclusionsAround twenty percent of meningitis survivors experience after-effects. However, very little research on their psychological impact has been conducted. This report details a small explorative investigation into these psychological impacts.To explore the impact sequelae have on the meningitis survivors affected.Thematic analysis of one-hundred individual user’s blog posts, self-reporting one or more sequelae after a diagnosis of meningitis.Blog posters’ experiences varied greatly. Common trends in experience were mapped onto three themes. ‘Struggling to Adjust to the New Normal’ captures blog posters’ struggles in returning to their lives post-hospitalization. ‘Navigating Possibilities for Positivity’ explores how blog posters either reported positive change due to their illness experience or felt a pressure, or inability, to do so. ‘The Impact of Knowledge and Support’ overarching two sub-themes; ‘Lack of Awareness Causing Further Suffering’ and ‘Validation Leads to Narrative Shift’. These sub-themes contrast differences in experience blog posters reported, with and without knowledge, of the cause of their symptoms and support in dealing with the resulting difficulties.Consistent and structured after-care would benefit patients experiencing sequelae. Suggestions of a possible format this could take are put forward. In addition, self-regulatory models of illness perception help explain some variations in blog posters experiences, with possible intervention plans based on these models also suggested. However, limitations, including the comparatively small and highly selected sample, mean that further research is necessary to validate the findings and assess their validity, widespread applicability, and financial feasibility. [ABSTRACT FROM AUTHOR]

Published
2024
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8. Cognitive behavioural therapy for functional dysphonia : development of a complex intervention

Author

Deary, Vincent Aaron Vernon Adrian Hugo

Subjects
616.855606
Abstract

Functional dysphonia, loss or alteration of voice in the absence of physical pathology, is the commonest presentation to speech and language therapists (SLTs) and accounts for up to 40,000 new cases every year in the UK. Besides its impact on personal and work life, functional dysphonia is also associated with increased levels of anxiety and depression and poor general health. Voice therapy delivered by SLTs improves voice but not these associated symptoms. The aim of this research project was therefore to develop an improved intervention. Method A broad cognitive behavioural model of medically unexplained symptoms (MUS) was researched and identified as a suitable theoretical basis for the intervention development process. This was then applied as an assessment format in a series of patient interviews. Data from this stage were used to design a cognitive behavioural therapy (CBT) intervention for a SLT to deliver in a small consecutive cohort study. Data and clinical insights from this study were used to further develop the CBT intervention, which was then trialled in an external pilot patient randomised trial. Following up findings from the consecutive cohort phase, particular attention was paid in the randomised trial to the process issues involved in the professional behaviour change of the SLT, and a questionnaire study to investigate fatigue and perfectionism in functional dysphonia patients was conducted. Results and conclusion It was acceptable and feasible for a SLT to deliver CBT and there was some evidence of clinical effectiveness. This data is used to discuss the power and design of a future definitive study. The focus on process illuminated the work that needed to be done to embed a complex intervention in clinical practice. Functional dysphonia was shown to resemble other MUS in ways that could significantly contribute to our understanding and treatment of this condition.

Published
2011

11. Effectiveness of a symptom-clinic intervention delivered by general practitioners with an extended role for people with multiple and persistent physical symptoms in England: the Multiple Symptoms Study 3 pragmatic, multicentre, parallel-group, individually randomised controlled trial

Author

Burton, Christopher, Mooney, Cara, Sutton, Laura, White, David, Dawson, Jeremy, Neilson, Aileen R, Rowlands, Gillian, Thomas, Steve, Horspool, Michelle, Fryer, Kate, Greco, Monica, Sanders, Tom, Thomas, Ruth E, Cooper, Cindy, Turton, Emily, Waheed, Waquas, Woodward, Jonathan, Mallender, Ellen, and Deary, Vincent

Abstract

People with multiple and persistent physical symptoms have impaired quality of life and poor experiences of health care. We aimed to evaluate the effectiveness of a community-based symptom-clinic intervention in people with multiple and persistent physical symptoms, hypothesising that this symptoms clinic plus usual care would be superior to usual care only.

Published
2024
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17. Study protocol for the Multiple Symptoms Study 3: a pragmatic, randomised controlled trial of a clinic for patients with persistent (medically unexplained) physical symptoms

Author

Mooney, Cara, primary, White, David Alexander, additional, Dawson, Jeremy, additional, Deary, Vincent, additional, Fryer, Kate, additional, Greco, Monica, additional, Horspool, Michelle, additional, Neilson, Aileen, additional, Rowlands, Gillian, additional, Sanders, Tom, additional, Thomas, Ruth E, additional, Thomas, Steve, additional, Waheed, Waquas, additional, and Burton, Christopher D, additional

Published
2022
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21. Mere end lugtesans - COVID-19 er associeret med svær påvirkning af lugtesansen, smagssansen og mundfølelsen

Author

Parma, Valentina, Ohla, Kathrin, Veldhuizen, Maria G, Niv, Masha Y, Kelly, Christine E, Bakke, Alyssa J, Cooper, Keiland W, Bouysset, Cédric, Pirastu, Nicola, Dibattista, Michele, Kaur, Rishemjit, Liuzza, Marco Tullio, Pepino, Marta Y, Schöpf, Veronika, Pereda-Loth, Veronica, Olsson, Shannon B, Gerkin, Richard C, Rohlfs Domínguez, Paloma, Albayay, Javier, Farruggia, Michael C, Bhutani, Surabhi, Fjaeldstad, Alexander W, Kumar, Ritesh, Menini, Anna, Bensafi, Moustafa, Sandell, Mari, Konstantinidis, Iordanis, Di Pizio, Antonella, Genovese, Federica, Öztürk, Lina, Thomas-Danguin, Thierry, Frasnelli, Johannes, Boesveldt, Sanne, Saatci, Özlem, Saraiva, Luis R, Lin, Cailu, Golebiowski, Jérôme, Hwang, Liang-Dar, Ozdener, Mehmet Hakan, Guàrdia, Maria Dolors, Laudamiel, Christophe, Ritchie, Marina, Havlícek, Jan, Pierron, Denis, Roura, Eugeni, Navarro, Marta, Nolden, Alissa A, Lim, Juyun, Whitcroft, Katherine L, Colquitt, Lauren R, Ferdenzi, Camille, Brindha, Evelyn V, Altundag, Aytug, Macchi, Alberto, Nunez-Parra, Alexia, Patel, Zara M, Fiorucci, Sébastien, Philpott, Carl M, Smith, Barry C, Lundström, Johan N, Mucignat, Carla, Parker, Jane K, van den Brink, Mirjam, Schmuker, Michael, Fischmeister, Florian Ph S, Heinbockel, Thomas, Shields, Vonnie D C, Faraji, Farhoud, Santamaría, Enrique, Fredborg, William E A, Morini, Gabriella, Olofsson, Jonas K, Jalessi, Maryam, Karni, Noam, D’Errico, Anna, Alizadeh, Rafieh, Pellegrino, Robert, Meyer, Pablo, Huart, Caroline, Chen, Ben, Soler, Graciela M, Alwashahi, Mohammed K, Welge-Lüssen, Antje, Freiherr, Jessica, de Groot, Jasper H B, Klein, Hadar, Okamoto, Masako, Singh, Preet Bano, Hsieh, Julien W, Abdulrahman, Olagunju, Dalton, Pamela, Yan, Carol H, Voznessenskaya, Vera V, Chen, Jingguo, Sell, Elizabeth A, Walsh-Messinger, Julie, Archer, Nicholas S, Koyama, Sachiko, Deary, Vincent, Roberts, S Craig, Yanık, Hüseyin, Albayrak, Samet, Nováková, Lenka Martinec, Croijmans, Ilja, Mazal, Patricia Portillo, Moein, Shima T, Margulis, Eitan, Mignot, Coralie, Mariño, Sajidxa, Georgiev, Dejan, Kaushik, Pavan K, Malnic, Bettina, Wang, Hong, Seyed-Allaei, Shima, Yoluk, Nur, Razzaghi-Asl, Sara, Justice, Jeb M, Restrepo, Diego, Reed, Danielle R, Hummel, Thomas, Munger, Steven D, Hayes, John E, Indústries Alimentàries, Qualitat i Tecnologia Alimentària, Tecnologia Alimentària, Temple University [Philadelphia], Pennsylvania Commonwealth System of Higher Education (PCSHE), Forschungszentrum Jülich GmbH | Centre de recherche de Juliers, Helmholtz-Gemeinschaft = Helmholtz Association, Mersin University, The Hebrew University of Jerusalem (HUJ), AbScent, Pennsylvania State University (Penn State), Penn State System, University of California [Irvine] (UC Irvine), University of California (UC), Université Côte d'Azur (UCA), University of Edinburgh, Università degli studi di Bari Aldo Moro = University of Bari Aldo Moro (UNIBA), Central Scientific Instruments Organisation (CSIR), Università degli Studi 'Magna Graecia' di Catanzaro = University of Catanzaro (UMG), University of Illinois at Urbana-Champaign [Urbana], University of Illinois System, Medizinische Universität Wien = Medical University of Vienna, Groupement scientifique de Biologie et de Medecine Spatiale (GSBMS), Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Centre National d'Études Spatiales [Toulouse] (CNES), Tata Institute for Fundamental Research (TIFR), Arizona State University [Tempe] (ASU), Universidad de Extremadura - University of Extremadura (UEX), Università degli Studi di Padova = University of Padua (Unipd), Yale School of Medicine [New Haven, Connecticut] (YSM), San Diego State University (SDSU), Aarhus University [Aarhus], University of Hertfordshire [Hatfield] (UH), Scuola Internazionale Superiore di Studi Avanzati / International School for Advanced Studies (SISSA / ISAS), Neurosciences Sensorielles Comportement Cognition, Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon-Centre National de la Recherche Scientifique (CNRS), Helsingin yliopisto = Helsingfors universitet = University of Helsinki, University of Turku, Aristotle University of Thessaloniki, Leibniz-Institute for Food Systems Biology at the Technical University of Munich, Monell Chemical Senses Center, Centre des Sciences du Goût et de l'Alimentation [Dijon] (CSGA), Université de Bourgogne (UB)-AgroSup Dijon - Institut National Supérieur des Sciences Agronomiques, de l'Alimentation et de l'Environnement-Centre National de la Recherche Scientifique (CNRS)-Institut National de Recherche pour l’Agriculture, l’Alimentation et l’Environnement (INRAE), Université Bourgogne Franche-Comté [COMUE] (UBFC), Université de Montréal (UdeM), Wageningen University and Research Centre (WUR), Medical Science University, Sidra Medicine [Doha, Qatar], Institut de Chimie de Nice (ICN), Université Nice Sophia Antipolis (1965 - 2019) (UNS), COMUE Université Côte d'Azur (2015-2019) (COMUE UCA)-COMUE Université Côte d'Azur (2015-2019) (COMUE UCA)-Institut de Chimie du CNRS (INC)-Centre National de la Recherche Scientifique (CNRS)-Université Côte d'Azur (UCA), University of Southern Queensland (USQ), Institut de Recerca i Tecnologia Agroalimentàries = Institute of Agrifood Research and Technology (IRTA), DreamAir Llc, Charles University [Prague] (CU), Anthropologie Moléculaire et Imagerie de Synthèse (AMIS), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées-Centre National de la Recherche Scientifique (CNRS), University of Massachusetts System (UMASS), Oregon State University (OSU), Ear Institute, UCL, Lyon Neuroscience Research center, Karunya University, Biruni University, Assi Sette Llaghi Varese, Stanford School of Medicine [Stanford], Stanford Medicine, Stanford University-Stanford University, University of East Anglia [Norwich] (UEA), California Department of Food and Agriculture (CDFA), Unité mixte de recherche interactions plantes-microorganismes, Institut National de la Recherche Agronomique (INRA)-Université Toulouse III - Paul Sabatier (UT3), Maastricht University [Maastricht], Institute for Biology - Neurobiology, Freie Universität Berlin, Karl-Franzens-Universität Graz, Howard University College of Medicine, Towson University, University of California [San Diego] (UC San Diego), Proteomics, Center for Applied Medical Research (CIMA), Stockholm University, University of Gastronomic Sciences, Iran University of Medical Sciences, Goethe Universität Frankfurt, University of Tennessee, IBM T.J. Watson Research Center, Université libre de Bruxelles (ULB), Guangzhou Medical University, Buenos Aires University and GEOG (Grupo de Estudio de Olfato y Gusto), Sultan Qaboos University (SQU), Federal University of Technology of Akure (FUTA), A.N. Severtsov Institute of Ecology and Evolution, Russian Academy of Sciences [Moscow] (RAS), Hospital of Xi'an Jiaotong University, University of Pennsylvania, University of Dayton, CSIRO Agriculture and Food (CSIRO), Indiana University [Bloomington], Indiana University System, University of Northumbria at Newcastle [United Kingdom], University of Stirling, Middle East Technical University [Ankara] (METU), Utrecht University [Utrecht], Instituto Universitario del Hospital Italiano [Buenos Aires, Argentina], Institute for Research in Fundamental Sciences [Tehran] (IPM), Hebrew University of Jerusalem, Technische Universität Dresden = Dresden University of Technology (TU Dresden), Terrazas del Club Hipico, University Medical Centre Ljubljana [Ljubljana, Slovenia] (UMCL), Tata Institute of Fundamental Research [Bangalore], Universidade de São Paulo = University of São Paulo (USP), University of Florida [Gainesville] (UF), University of Colorado Anschutz [Aurora], Center for Smell and Taste, Department of Food Science, Pennsylvania State University., Julien, Sabine, Tıp Fakültesi, UCL - SSS/IONS/NEUR - Clinical Neuroscience, UCL - (SLuc) Service d'oto-rhino-laryngologie, Department of Food and Nutrition, Senses and Food, Research Center Jülich, University of California [Irvine] (UCI), University of California, Università degli studi di Bari Aldo Moro (UNIBA), Università degli Studi 'Magna Graecia' di Catanzaro [Catanzaro, Italie] (UMG), University of Extremadura, University of Padova, Yale University School of Medicine, Centre National de la Recherche Scientifique (CNRS)-Université Claude Bernard Lyon 1 (UCBL), Université de Lyon-Université de Lyon, University of Helsinki, Institut de Chimie du CNRS (INC)-Centre National de la Recherche Scientifique (CNRS)-Université Côte d'Azur (UCA)-Université Nice Sophia Antipolis (... - 2019) (UNS), COMUE Université Côte d'Azur (2015-2019) (COMUE UCA)-COMUE Université Côte d'Azur (2015-2019) (COMUE UCA), Institute of Agrifood Research and Technology (IRTA), Universita degli Studi di Padova, Centre National de la Recherche Scientifique (CNRS)-Institut National de la Recherche Agronomique (INRA)-Université Toulouse III - Paul Sabatier (UT3), Université Fédérale Toulouse Midi-Pyrénées-Université Fédérale Toulouse Midi-Pyrénées, Karl-Franzens-Universität [Graz, Autriche], University of California San Diego Health, University of Brussels, University of Pennsylvania [Philadelphia], Tata Institute of Fundamental Research, University of São Paulo (USP), UCL - SSS/IONS - Institute of NeuroScience, FSE Campus Venlo, and RS: FSE UCV

Subjects
Male, Taste, Physiology, Smagstab, Audiology, AcademicSubjects/SCI01180, Settore BIO/09 - Fisiologia, Behavioral Neuroscience, chemistry.chemical_compound, Olfaction Disorders, Taste Disorders, 0302 clinical medicine, RATINGS, Hyposmia, Surveys and Questionnaires, CHEMOSENSITIVITY, [SDV.IDA]Life Sciences [q-bio]/Food engineering, Viral, PALADAR, 030223 otorhinolaryngology, Sensory Science and Eating Behaviour, media_common, TASTE, US NATIONAL-HEALTH, [SDV.IDA] Life Sciences [q-bio]/Food engineering, Middle Aged, Biological Sciences, 16. Peace & justice, Sensory Systems, 3. Good health, Smell, GCCR Group Author, ddc:540, Smell loss, Female, Original Article, medicine.symptom, Corrigendum, Coronavirus Infections, olfaction, Adult, somatosensation, medicine.medical_specialty, 663/664, Coronavirus disease 2019 (COVID-19), OLFACTORY DISORDERS, Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), media_common.quotation_subject, Pneumonia, Viral, head and neck surgery, Aged, Betacoronavirus, COVID-19, Humans, Pandemics, SARS-CoV-2, Self Report, Somatosensory Disorders, Young Adult, Anosmia, Sensory system, Olfaction, 03 medical and health sciences, Chemesthesis, Physiology (medical), Perception, medicine, Neurology & Neurosurgery, Behaviour Change and Well-being, business.industry, R-PACKAGE, 3112 Neurosciences, Pneumonia, Parosmia, COMPONENT, Smagssans, [SDV.AEN] Life Sciences [q-bio]/Food and Nutrition, Sensoriek en eetgedrag, chemistry, Lugtetab, business, [SDV.AEN]Life Sciences [q-bio]/Food and Nutrition, 030217 neurology & neurosurgery, Lugtesans
Abstract

Correction: Chemical Senses, Volume 46, 2021, bjab050, https://doi.org/10.1093/chemse/bjab050 Published: 08 December 2021 Recent anecdotal and scientific reports have provided evidence of a link between COVID-19 and chemosensory impairments, such as anosmia. However, these reports have downplayed or failed to distinguish potential effects on taste, ignored chemesthesis, and generally lacked quantitative measurements. Here, we report the development, implementation, and initial results of a multilingual, international questionnaire to assess self-reported quantity and quality of perception in 3 distinct chemosensory modalities (smell, taste, and chemesthesis) before and during COVID-19. In the first 11 days after questionnaire launch, 4039 participants (2913 women, 1118 men, and 8 others, aged 19-79) reported a COVID-19 diagnosis either via laboratory tests or clinical assessment. Importantly, smell, taste, and chemesthetic function were each significantly reduced compared to their status before the disease. Difference scores (maximum possible change +/- 100) revealed a mean reduction of smell (-79.7 +/- 28.7, mean +/- standard deviation), taste (-69.0 +/- 32.6), and chemesthetic (-37.3 +/- 36.2) function during COVID-19. Qualitative changes in olfactory ability (parosmia and phantosmia) were relatively rare and correlated with smell loss. Importantly, perceived nasal obstruction did not account for smell loss. Furthermore, chemosensory impairments were similar between participants in the laboratory test and clinical assessment groups. These results show that COVID-19-associated chemosensory impairment is not limited to smell but also affects taste and chemesthesis.The multimodal impact of COVID-19 and the lack of perceived nasal obstruction suggest that severe acute respiratory syndrome coronavirus strain 2 (SARS-CoV-2) infection may disrupt sensory-neural mechanisms.

Published
2020
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25. Corrigendum to: More than smell: COVID-19 is associated with severe impairment of smell, taste, and chemesthesis

Author

Parma, Valentina, Ohla, Kathrin, Veldhuizen, Maria G., Niv, Masha Y., Kelly, Christine E., Bakke, Alyssa J., Cooper, Keiland W., Bouysset, Cédric, Pirastu, Nicola, Dibattista, Michele, Kaur, Rishemjit, Liuzza, Marco Tullio, Pepino, Marta Y., Schöpf, Veronika, Pereda-Loth, Veronica, Olsson, Shannon B., Gerkin, Richard C., Rohlfs Domínguez, Paloma, Albayay, Javier, Farruggia, Michael C., Bhutani, Surabhi, Fjaeldstad, Alexander W., Kumar, Ritesh, Menini, Anna, Bensafi, Moustafa, Sandell, Mari, Konstantinidis, Iordanis, Di Pizio, Antonella, Genovese, Federica, Öztürk, Lina, Thomas-Danguin, Thierry, Frasnelli, Johannes, Boesveldt, Sanne, Saatci, Özlem, Saraiva, Luis R., Lin, Cailu, Golebiowski, Jérôme, Hwang, Liang Dar, Ozdener, Mehmet Hakan, Guàrdia, Maria Dolors, Laudamiel, Christophe, Ritchie, Marina, Havlícek, Jan, Pierron, Denis, Roura, Eugeni, Navarro, Marta, Nolden, Alissa A., Lim, Juyun, Whitcroft, Katherine L., Colquitt, Lauren R., Ferdenzi, Camille, Brindha, Evelyn V., Altundag, Aytug, Macchi, Alberto, Nunez-Parra, Alexia, Patel, Zara M., Fiorucci, Sébastien, Philpott, Carl M., Smith, Barry C., Lundström, Johan N., Mucignat, Carla, Parker, Jane K., Van Den Brink, Mirjam, Schmuker, Michael, Fischmeister, Florian Ph S., Heinbockel, Thomas, Shields, Vonnie D.C., Faraji, Farhoud, Santamaría, Enrique, Fredborg, William E.A., Morini, Gabriella, Olofsson, Jonas K., Jalessi, Maryam, Karni, Noam, D'Errico, Anna, Alizadeh, Rafieh, Pellegrino, Robert, Meyer, Pablo, Huart, Caroline, Chen, Ben, Soler, Graciela M., Alwashahi, Mohammed K., Welge-Lüssen, Antje, Freiherr, Jessica, De Groot, Jasper H.B., Klein, Hadar, Okamoto, Masako, Singh, Preet Bano, Hsieh, Julien W., Abdulrahman, Olagunju, Dalton, Pamela, Yan, Carol H., Voznessenskaya, Vera V., Chen, Jingguo, Sell, Elizabeth A., Walsh-Messinger, Julie, Archer, Nicholas S., Koyama, Sachiko, Deary, Vincent, Roberts, S.C., Yanlk, Hüseyin, Albayrak, Samet, Nováková, Lenka Martinec, Croijmans, Ilja, Mazal, Patricia Portillo, Moein, Shima T., Margulis, Eitan, Mignot, Coralie, Mariño, Sajidxa, Georgiev, Dejan, Kaushik, Pavan K., Malnic, Bettina, Wang, Hong, Seyed-Allaei, Shima, Yoluk, Nur, Razzaghi-Asl, Sara, Justice, Jeb M., Restrepo, Diego, Reed, Danielle R., Hummel, Thomas, Munger, Steven D., Hayes, John E., UCL - SSS/IONS - Institute of NeuroScience, UCL - SSS/IONS/NEUR - Clinical Neuroscience, and UCL - (SLuc) Service d'oto-rhino-laryngologie

Subjects
Behavioral Neuroscience, Sensoriek en eetgedrag, Behaviour Change and Well-being, Physiology, Physiology (medical), ddc:540, Life Science, Sensory Systems, Sensory Science and Eating Behaviour, VLAG
Abstract

This is a correction notice for article bjaa041 (DOI: https:// doi.org/10.1093/chemse/bjaa041), published 20 June 2020. An incorrect version of the caption to Figure 5 was mistakenly included in the published paper. An updated version is given below. Neither the data nor the paper's conclusions were affected by this correction. The authors sincerely apologize for the error. (A) Correlations between the 3 principal components with respect to changes in 3 chemosensory modalities (i.e., taste, smell, and chemesthesis). Shades of gray indicate positive correlation, whereas shades of red indicate negative correlations. White denotes no correlation. (B) Clusters of participants identified by k-means clustering. The scatterplot shows each participant's loading on dimension 1 (degree of smell and taste loss, PC1 on x-Axis) and dimension 2 (degree of chemesthesis loss, PC2 on y-Axis). Based on the centroid of each cluster, participants in cluster 1 (blue, N = 1767; top left) are generally characterized by significant smell, taste and chemesthesis loss. Participants in cluster 2 (orange, N = 1724; bottom center) are generally characterized by ratings that reflect smell/taste loss with preserved chemesthesis. Loadings for participants in cluster 3 (green, N = 548; right side) are generally characterized by reduced smell and taste loss, and preserved chemesthesis.

Published
2021
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28. More than just smell - COVID-19 is associated with severe impairment of smell, taste, and chemesthesis

Author

Parma, Valentina, Ohla, Kathrin, Veldhuizen, Maria G., Niv, Masha Y., Kelly, Christine E., Bakke, Alyssa J., Cooper, Keiland W., Bouysset, Cédric, Pirastu, Nicola, Dibattista, Michele, Kaur, Rishemjit, Liuzza, Marco Tullio, Pepino, Marta Y., Schöpf, Veronika, Pereda-Loth, Veronica, Olsson, Shannon B, Gerkin, Richard C, Domínguez, Paloma Rohlfs, Albayay, Javier, Farruggia, Michael C., Bhutani, Surabhi, Fjaeldstad, Alexander W, Kumar, Ritesh, Menini, Anna, Bensafi, Moustafa, Sandell, Mari, Konstantinidis, Iordanis, Pizio, Antonella Di, Genovese, Federica, Öztürk, Lina, Thomas-Danguin, Thierry, Frasnelli, Johannes, Boesveldt, Sanne, Saatci, Özlem, Saraiva, Luis R., Lin, Cailu, Golebiowski, Jérôme, Hwang, Liang-Dar, Ozdener, Mehmet Hakan, Guàrdia, Maria Dolors, Laudamiel, Christophe, Ritchie, Marina, Fialov, Jitka Trebická, Havlícek, Jan, Pierron, Denis, Roura, Eugeni, Navarro, Marta, Nolden, Alissa A., Lim, Juyun, Whitcroft, KL, Colquitt, Lauren R., Ferdenzi, Camille, Brindha, Evelyn V., Altundag, Aytug, Macchi, Alberto, Nunez-Parra, Alexia, Patel, Zara M., Fiorucci, Sébastien, Philpott, Carl M., Smith, Barry C., Lundström, Johan N, Mucignat, Carla, Parker, Jane K., Brink, Mirjam van den, Schmuker, Michael, Fischmeister, Florian Ph.S, Heinbockel, Thomas, Shields, Vonnie D.C., Faraji, Farhoud, Santamaría, Enrique Enrique, Fredborg, William E.A., Morini, Gabriella, Olofsson, Jonas K., Jalessi, Maryam, Karni, Noam, D'Errico, Anna, Alizadeh, Rafieh, Pellegrino, Robert, Meyer, Pablo, Huart, Caroline, Chen, Ben, Soler, Graciela M., Alwashahi, Mohammed K., Abdulrahman, Olagunju, Welge-Lüssen, Antje, Dalton, Pamela, Freiherr, Jessica, Yan, Carol H., Groot, Jasper H. B. de, Voznessenskaya, Vera V., Klein, Hadar, Chen, Jingguo, Okamoto, Masako, Sell, Elizabeth A., Singh, Preet Bano, Walsh-Messinger, Julie, Archer, Nicholas S., Koyama, Sachiko, Deary, Vincent, Roberts, S. Craig, Yanik, Hüseyin, Albayrak, Samet, Novákov, Lenka Martinec, Croijmans, Ilja, Mazal, Patricia Portillo, Moein, Shima T., Margulis, Eitan, Mignot, Coralie, Mariño, Sajidxa, Georgiev, Dejan, Kaushik, Pavan K., Malnic, Bettina, Wang, Hong, Seyed-Allaei, Shima, Yoluk, Nur, Asl, Sara Razzaghi, Justice, Jeb M., Restrepo, Diego, Reed, Danielle R., Hummel, Thomas, Munger, Steven, Hayes, John E, Parma, Valentina, Ohla, Kathrin, Veldhuizen, Maria G., Niv, Masha Y., Kelly, Christine E., Bakke, Alyssa J., Cooper, Keiland W., Bouysset, Cédric, Pirastu, Nicola, Dibattista, Michele, Kaur, Rishemjit, Liuzza, Marco Tullio, Pepino, Marta Y., Schöpf, Veronika, Pereda-Loth, Veronica, Olsson, Shannon B, Gerkin, Richard C, Domínguez, Paloma Rohlfs, Albayay, Javier, Farruggia, Michael C., Bhutani, Surabhi, Fjaeldstad, Alexander W, Kumar, Ritesh, Menini, Anna, Bensafi, Moustafa, Sandell, Mari, Konstantinidis, Iordanis, Pizio, Antonella Di, Genovese, Federica, Öztürk, Lina, Thomas-Danguin, Thierry, Frasnelli, Johannes, Boesveldt, Sanne, Saatci, Özlem, Saraiva, Luis R., Lin, Cailu, Golebiowski, Jérôme, Hwang, Liang-Dar, Ozdener, Mehmet Hakan, Guàrdia, Maria Dolors, Laudamiel, Christophe, Ritchie, Marina, Fialov, Jitka Trebická, Havlícek, Jan, Pierron, Denis, Roura, Eugeni, Navarro, Marta, Nolden, Alissa A., Lim, Juyun, Whitcroft, KL, Colquitt, Lauren R., Ferdenzi, Camille, Brindha, Evelyn V., Altundag, Aytug, Macchi, Alberto, Nunez-Parra, Alexia, Patel, Zara M., Fiorucci, Sébastien, Philpott, Carl M., Smith, Barry C., Lundström, Johan N, Mucignat, Carla, Parker, Jane K., Brink, Mirjam van den, Schmuker, Michael, Fischmeister, Florian Ph.S, Heinbockel, Thomas, Shields, Vonnie D.C., Faraji, Farhoud, Santamaría, Enrique Enrique, Fredborg, William E.A., Morini, Gabriella, Olofsson, Jonas K., Jalessi, Maryam, Karni, Noam, D'Errico, Anna, Alizadeh, Rafieh, Pellegrino, Robert, Meyer, Pablo, Huart, Caroline, Chen, Ben, Soler, Graciela M., Alwashahi, Mohammed K., Abdulrahman, Olagunju, Welge-Lüssen, Antje, Dalton, Pamela, Freiherr, Jessica, Yan, Carol H., Groot, Jasper H. B. de, Voznessenskaya, Vera V., Klein, Hadar, Chen, Jingguo, Okamoto, Masako, Sell, Elizabeth A., Singh, Preet Bano, Walsh-Messinger, Julie, Archer, Nicholas S., Koyama, Sachiko, Deary, Vincent, Roberts, S. Craig, Yanik, Hüseyin, Albayrak, Samet, Novákov, Lenka Martinec, Croijmans, Ilja, Mazal, Patricia Portillo, Moein, Shima T., Margulis, Eitan, Mignot, Coralie, Mariño, Sajidxa, Georgiev, Dejan, Kaushik, Pavan K., Malnic, Bettina, Wang, Hong, Seyed-Allaei, Shima, Yoluk, Nur, Asl, Sara Razzaghi, Justice, Jeb M., Restrepo, Diego, Reed, Danielle R., Hummel, Thomas, Munger, Steven, and Hayes, John E

Abstract

Recent anecdotal and scientific reports have provided evidence of a link between COVID-19 and chemosensory impairments such as anosmia. However, these reports have downplayed or failed to distinguish potential effects on taste, ignored chemesthesis, generally lacked quantitative measurements, and were mostly restricted to data from single countries. Here, we report the development, implementation and initial results of a multi-lingual, international questionnaire to assess self-reported quantity and quality of perception in three distinct chemosensory modalities (smell, taste, and chemesthesis) before and during COVID-19. In the first 11 days after questionnaire launch, 4039 participants (2913 women, 1118 men, 8 other, ages 19-79) reported a COVID-19 diagnosis either via laboratory tests or clinical assessment. Importantly, smell, taste and chemesthetic function were each significantly reduced compared to their status before the disease. Difference scores (maximum possible change ±100) revealed a mean reduction of smell (-79.7±28.7, mean±SD), taste (-69.0±32.6), and chemesthetic (-37.3±36.2) function during COVID-19. Qualitative changes in olfactory ability (parosmia and phantosmia) were relatively rare and correlated with smell loss. Importantly, perceived nasal obstruction did not account for smell loss. Furthermore, chemosensory impairments were similar between participants in the laboratory test and clinical assessment groups. These results show that COVID-19-associated chemosensory impairment is not limited to smell, but also affects taste and chemesthesis. The multimodal impact of COVID-19 and lack of perceived nasal obstruction suggest that SARS-CoV-2 infection may disrupt sensory-neural mechanisms. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This work was supported financially with discretionary funds from the Pennsylvania State University (Penn State), including a gift from James and Helen Zallie g

Published
2020

30. Experience of sleep disruption in primary Sjögren’s syndrome: A focus group study

Author

Hackett, Katie L, Deary, Vincent, Deane, Katherine HO, Newton, Julia L, Ng, Wan-Fai, and Rapley, Tim

Subjects
long-term conditions, Sleep, Research Papers, qualitative research
Abstract

Introduction: Primary Sjögren’s syndrome is the third most common systemic autoimmune rheumatic disease, following rheumatoid arthritis and systemic lupus erythematosus, and results in dryness, fatigue, discomfort and sleep disturbances. Sleep is relatively unexplored in primary Sjögren’s syndrome. We investigated the experiences of sleep disturbances from the viewpoint of primary Sjögren’s syndrome patients and their partners and explored the acceptability of cognitive behavioural therapy for insomnia. Method: We used focus groups to collect qualitative data from 10 patients with primary Sjögren’s syndrome and three partners of patients. The data were recorded, transcribed verbatim and analysed using thematic analysis. Results: Five themes emerged from the data: (a) Experience of sleep disturbances; (b) variation and inconsistency in sleep disturbances; (c) the domino effect of primary Sjögren’s syndrome symptoms; (d) strategies to manage sleep; (e) acceptability of evidence-based techniques. Sleep disturbances were problematic for all patients, but specific disturbances varied between participants. These included prolonged sleep onset time and frequent night awakenings and were aggravated by pain and discomfort. Patients deployed a range of strategies to try and self-manage. Cognitive behavioural therapy for insomnia was seen as an acceptable intervention, as long as a rationale for its use is given and it is tailored for primary Sjögren’s syndrome. Conclusion: Primary Sjögren’s syndrome patients described a range of sleep disturbances. Applying tailored, evidence-based sleep therapy interventions may improve sleep, severity of other primary Sjögren’s syndrome symptoms and functional ability.

Published
2018

39. Visually Impaired OLder people’s Exercise programme for falls prevenTion (VIOLET): a feasibility study

Author

Adams, Nicola, Skelton, Dawn, Bailey, Cathy, Howel, Denise, Coe, Dorothy, Lampitt, Rosy, Wilkinson, Jennifer, Fouweather, Tony, De Jong, Lex, Gawler, Sheena, Deary, Vincent, Gray, Joanne, Waterman, Heather, Parry, Steve W, Adams, Nicola, Skelton, Dawn, Bailey, Cathy, Howel, Denise, Coe, Dorothy, Lampitt, Rosy, Wilkinson, Jennifer, Fouweather, Tony, De Jong, Lex, Gawler, Sheena, Deary, Vincent, Gray, Joanne, Waterman, Heather, and Parry, Steve W

Abstract

BACKGROUND:The visually impaired have a higher risk of falling and are likely to avoid activity. OBJECTIVES:To adapt the existing Falls Management Exercise (FaME) programme, which is delivered in the community, for visually impaired older people (VIOP) and to investigate the feasibility of conducting a definitive randomised controlled trial of this adapted intervention. DESIGN:Phase I – consultation with stakeholders to adapt the existing programme. Two focus groups were conducted, each with 10 VIOP across the study sites. Phase II – two-centre randomised pilot trial and economic evaluation of the adapted programme for VIOP versus usual care. Phases III and IV – qualitative interviews with VIOP and Postural Stability Instructors regarding their views and experiences of the research process, undertaking the intervention and its acceptability. INTERVENTION:This was adapted from the group-based FaME programme. A 1-hour exercise programme ran weekly over 12 weeks at the study sites (Newcastle upon Tyne and Glasgow) and was delivered by third-sector organisations. Participants were advised to also exercise at home for 2 hours per week. Those randomised to the usual activities group received no intervention. OUTCOME MEASURES:These were completed at baseline, week 12 and week 24. The primary potential outcome measure used was the Short Form Falls Efficacy Scale – International. Secondary outcome assessment measures were activity avoidance, current activity, balance/falls risk, physical activity, loneliness, anxiety and depression, work and social adjustment, quality of life and economic costs. Participants’ compliance was assessed by reviewing attendance records and self-reported compliance with the home exercises. Instructors’ compliance with the course content (fidelity) was assessed by a researcher attending a sample of exercise sessions. Adverse events were collected in a weekly telephone call for all participants in both the intervention and control arm. FINDINGS:An a

Published
2019

41. Elisions in the field of caring

Author

Deary, Vincent, Deary, Ian J., McKenna, Hugh P., McCance, Tanya V., Watson, Roger, and Hoogbruin, Amandah Lea

Published
2002

42. Mixed-methods study identifying key intervention targets to improve participation in daily living activities in primary Sjögren's syndrome patients

Author

Hackett, Katie L., Deane, Katherine H. O., Newton, Julia L., Deary, Vincent, Bowman, Simon J., Rapley, Tim, and Ng, Wan‐Fai

Subjects
Male, education, Sjögren's Syndrome, Social Support, Middle Aged, Sjogren's Syndrome, Activities of Daily Living, Quality of Life, Humans, Original Article, Female, Registries, Patient Participation, Aged
Abstract

Objective: Functional ability and participation in life situations are compromised in many primary Sjögren's syndrome (SS) patients. This study aimed to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions. Methods: Group concept mapping, a semiquantitative, mixed‐methods approach was used to identify and structure ideas from UK primary SS patients, adult household members living with a primary SS patient, and health care professionals. Brainstorming generated ideas, which were summarized into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions. Results: A total of 121 patients, 43 adult household members, and 67 health care professionals took part. In sum, 463 ideas were distilled down to 94 statements. These statements were grouped into 7 clusters: Patient Empowerment, Symptoms, Wellbeing, Access and Coordination of Health Care, Knowledge and Support, Public Awareness and Support, and Friends and Family. Patient Empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self‐manage symptoms of oral and ocular dryness, fatigue, pain, and poor sleep. Conclusion: Our data highlighted the fact that in addition to managing primary SS symptoms, interventions aiming to improve patient empowerment, general wellbeing, access to health care, patient education, and social support are important to facilitate improved participation in daily living activities.

Published
2018

43. Mixed-methods study identifying key intervention targets to improve participation in daily living activities in primary Sjögren's syndrome patients

Author

Hackett, Kate, Deane, Katherine, Newton, Julia, Deary, Vincent, Bowman, Simon, Rapley, Tim, and Ng, Wan-Fai

Subjects
education, L500
Abstract

Objective - Functional ability and participation in life situations are compromised in many primary Sjögren's syndrome (PSS) patients. This study aims to identify the key barriers and priorities to participation in daily living activities, in order to develop potential future interventions.\ud \ud Methods - Group concept mapping (GCM), a semi-quantitative, mixed-methods, approach was used to identify and structure ideas from UK PSS patients, adults living with a PSS patient (AHMs) and health care professionals (HCPs). Brainstorming generated ideas, which were summarised into a final set of statements. Participants individually arranged these statements into themes and rated each statement for importance. Multidimensional scaling and hierarchical cluster analysis were applied to sorted and rated data to produce visual representations of the ideas (concept maps), enabling identification of agreed priority areas for interventions.\ud \ud Results - 121 patients, 43 AHMs and 67 HCPs took part. 463 ideas were distilled down to 94 statements. These statements were grouped into seven clusters; ‘Patient empowerment’, ‘Symptoms’, ‘Wellbeing’, ‘Access and coordination of healthcare’, ‘Knowledge and support’, ‘Public awareness and support’ and ‘Family and friends’. Patient empowerment and Symptoms were rated as priority conceptual themes. Important statements within priority clusters indicate patients should be taken seriously and supported to self-manage symptoms of oral and ocular dryness, fatigue, pain and poor sleep.\ud \ud Conclusion - Our data highlighted that in addition to managing PSS symptoms; interventions aiming to improve patient empowerment, general wellbeing, access to healthcare, patient education and social support are important to facilitate improved participation in daily living activities.

Published
2018

44. Genetic contributions to self-reported tiredness

Author

Deary, Vincent, Hagenaars, Saskia, Harris, Sarah, Hill, William, Davies, Gail, Liewald, David, McIntosh, Andrew, Gale, Catharine, and Deary, Ian

Subjects
C800
Abstract

Self-reported tiredness and low energy, often called fatigue, are associated with poorer physical and mental health. Twin studies have indicated that this has a heritability between 6 and 50%. In the UK Biobank sample (N=108 976), we carried out a genome-wide association study (GWAS) of responses to the question, ‘Over the last two weeks, how often have you felt tired or had little energy?’ Univariate GCTA-GREML found that the proportion of variance explained by all common single-nucleotide polymorphisms for this tiredness question was 8.4% (s.e.=0.6%). GWAS identified one genome-wide significant hit (Affymetrix id 1:64178756_C_T; P=1.36 × 10−11). Linkage disequilibrium score regression and polygenic profile score analyses were used to test for shared genetic aetiology between tiredness and up to 29 physical and mental health traits from GWAS consortia. Significant genetic correlations were identified between tiredness and body mass index (BMI), C-reactive protein, high-density lipoprotein (HDL) cholesterol, forced expiratory volume, grip strength, HbA1c, longevity, obesity, self-rated health, smoking status, triglycerides, type 2 diabetes, waist–hip ratio, attention deficit hyperactivity disorder, bipolar disorder, major depressive disorder, neuroticism, schizophrenia and verbal-numerical reasoning (absolute rg effect sizes between 0.02 and 0.78). Significant associations were identified between tiredness phenotypic scores and polygenic profile scores for BMI, HDL cholesterol, low-density lipoprotein cholesterol, coronary artery disease, C-reactive protein, HbA1c, height, obesity, smoking status, triglycerides, type 2 diabetes, waist–hip ratio, childhood cognitive ability, neuroticism, bipolar disorder, major depressive disorder and schizophrenia (standardised β’s had absolute values

Published
2018

47. 047 Modelling logical intervention pathways through a stakeholder authored concept map to design complex interventions aimed at improving participation for people with Sjögren’s syndrome

Author

Hackett, Katie, primary, Kolehmainen, Niina, additional, Deary, Vincent, additional, Deane, Katherine H O, additional, Newton, Julia L, additional, McCallum, Claire, additional, Campbell, Miglena, additional, Ng, Wan-Fai, additional, and Rapley, Tim, additional

Published
2019
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48. Visually Impaired OLder people’s Exercise programme for falls prevenTion (VIOLET): a feasibility study

Author

Adams, Nicola, primary, Skelton, Dawn, additional, Bailey, Cathy, additional, Howel, Denise, additional, Coe, Dorothy, additional, Lampitt, Rosy, additional, Wilkinson, Jennifer, additional, Fouweather, Tony, additional, de Jong, Lex D, additional, Gawler, Sheena, additional, Deary, Vincent, additional, Gray, Joanne, additional, Waterman, Heather, additional, and Parry, Steve W, additional

Published
2019
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50. Conceptualizing the benefits of a group exercise program developed for those with chronic fatigue: a mixed methods clinical evaluation.

Author

Strassheim, Victoria, Deary, Vincent, Webster, Deborah A., Douglas, Jane, Newton, Julia L., and Hackett, Katie L.

Subjects
*EVALUATION of human services programs, *SELF-management (Psychology), *CONCEPT mapping, *DIZZINESS, *RESEARCH methodology, *MULTIDIMENSIONAL scaling, *T-test (Statistics), *EXERCISE, *FATIGUE (Physiology), *CLUSTER analysis (Statistics)
Abstract

Fatigue is a disabling and prevalent feature of many long-term conditions. Orthostatic dizziness is a commonly experienced by those with fatigue. The purpose was; to evaluate factors contributing to successful delivery of a novel group exercise program designed for people with chronic fatigue and orthostatic symptoms and identify targets to improve future program content and delivery. We used group concept mapping methodology. Participants of the exercise program with a long-term physical health condition and chronic fatigue- contributed ideas in response to a focus question. They sorted these ideas into themed piles and rated them for importance and success of the program delivery. Multidimensional scaling and cluster analysis were applied to the sort data to produce ideas clusters within a concept map. Value ratings were compared to evaluate the success of the program. The resulting concept map depicted seven key themed clusters of ideas: Exercises, Group atmosphere, Physical benefits, Self-management of symptoms, Acceptance and Education. Value plots of the rating data identified important and successful conceptual ideas. The concept maps have depicted key concepts relating to the successful delivery of a novel exercise program for people with fatigue and identified specific targets for future program enhancements. Orthostatic symptoms are common in those with fatigue and might be a target for group-based exercise programs. People with fatigue value a group-based exercise program that targets orthostatic symptoms. The key concepts of a group-based exercise program valued by those with fatigue are the exercises, group atmosphere, physical benefits, self-management support, acceptance, education and support with looking forwards following the program. [ABSTRACT FROM AUTHOR]

Published
2021
Full Text
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