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2. Electrodiagnostic subtyping in Guillain–Barré syndrome patients in the International Guillain–Barré Outcome Study

Author

Arends, S, Drenthen, J, de Koning, L, van den Bergh, P, Hadden, R, Kuwabara, S, Reisin, R, Shahrizaila, N, Ajroud-Driss, S, Antonini, G, Attarian, S, Balducci, C, Bertorini, T, Brannagan, T, Cavaletti, G, Chao, C, Chavada, G, Dillmann, K, Dimachkie, M, Galassi, G, Gutierrez-Gutierrez, G, Harbo, T, Islam, B, Islam, Z, Katzberg, H, Kusunoki, S, Manganelli, F, Miller, J, Pardo, J, Pereon, Y, Rajabally, Y, Sindrup, S, Stettner, M, Uncini, A, Verhamme, C, Vytopil, M, Waheed, W, Jacobs, B, Cornblath, D, Addington, J, Badrising, U, Barroso, F, Bateman, K, Bella, I, Benedetti, L, van den Berg, B, Bhavaraju-Sanka, R, Briani, C, Buermann, J, Busby, M, Butterworth, S, Casasnovas, C, Chen, S, Claeys, K, Conti, E, Cosgrove, J, Dalakas, M, van Damme, P, Dardiotis, E, Davidson, A, Doets, A, van Doorn, P, Echaniz-Laguna, A, Eftimov, F, Faber, K, Fazio, R, Feasby, T, Fehmi, J, Fokke, C, Fujioka, T, Fulgenzi, E, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, J, Goldstein, J, Gorson, K, Goyal, N, Granit, V, Gutmann, L, Hartung, H, Holt, J, Hsieh, S, Htut, M, Hughes, R, Jerico-Pascual, I, Kaida, K, Karafiath, S, Khoshnoodi, M, Kiers, L, Kleiweg, R, Kokubun, N, Kolb, N, van Koningsveld, R, van der Kooi, A, Kramers, H, Kuitwaard, K, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Lehmann, H, Cejas, L, Leonhard, S, Luijten, L, Lunn, M, Manji, H, Marfia, G, Infante, C, Martin-Aguilar, L, Martinez-Hernandez, E, Mataluni, G, Mattiazzi, M, Mcdermott, C, Meekins, G, Mohammad, Q, Monges, S, de la Tassa, G, Nascimbene, C, Nobile-Orazio, E, Nowak, R, Osei-Bonsu, M, Pelouto, F, Pulley, M, Gutierrez, L, Reddel, S, van der Ree, T, Rinaldi, S, Ripellino, P, Roberts, R, Rojas-Marcos, I, Roodbol, J, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Schenone, A, Tous, M, Sheikh, K, Silvestri, N, Sundrup, S, Sommer, C, Stein, B, Stino, A, Thomma, R, Twydell, P, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Walgaard, C, Wang, Y, Willison, H, Wirtz, P, van Woerkom, M, Zivkovic, S, Arends S., Drenthen J., de Koning L., van den Bergh P., Hadden R. D. M., Kuwabara S., Reisin R. C., Shahrizaila N., Ajroud-Driss S., Antonini G., Attarian S., Balducci C., Bertorini T., Brannagan T. H., Cavaletti G., Chao C. -C., Chavada G., Dillmann K. -U., Dimachkie M. M., Galassi G., Gutierrez-Gutierrez G., Harbo T., Islam B., Islam Z., Katzberg H., Kusunoki S., Manganelli F., Miller J. A. L., Pardo J., Pereon Y., Rajabally Y. A., Sindrup S., Stettner M., Uncini A., Verhamme C., Vytopil M., Waheed W., Jacobs B. C., Cornblath D. R., Addington J. M., Badrising U. A., Barroso F. A., Bateman K., Bella I., Benedetti L., van den Berg B., Bhavaraju-Sanka R., Briani C., Buermann J., Busby M., Butterworth S., Casasnovas C., Chen S., Claeys K., Conti E., Cosgrove J. S., Dalakas M., van Damme P., Dardiotis E., Davidson A., Doets A., van Doorn P., Echaniz-Laguna A., Eftimov F., Faber K. G., Fazio R., Feasby T. E., Fehmi J., Fokke C., Fujioka T., Fulgenzi E., Garssen M. P. J., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Goldstein J. M., Gorson K. C., Goyal N., Granit V., Gutmann L., Hartung H. -P., Holt J. K. L., Hsieh S. -T., Htut M., Hughes R. A. C., Jerico-Pascual I., Kaida K., Karafiath S., Khoshnoodi M. A., Kiers L., Kleiweg R. P., Kokubun N., Kolb N. A., van Koningsveld R., van der Kooi A. J., Kramers H., Kuitwaard K., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V. H., Lehmann H., Cejas L. L., Leonhard S. E., Luijten L., Lunn M. P. T., Manji H., Marfia G. A., Infante C. M., Martin-Aguilar L., Martinez-Hernandez E., Mataluni G., Mattiazzi M., McDermott C., Meekins G., Mohammad Q. D., Monges S., de la Tassa G. M., Nascimbene C., Nobile-Orazio E., Nowak R. J., Osei-Bonsu M., Pelouto F., Pulley M. T., Gutierrez L. Q., Reddel S. W., van der Ree T., Rinaldi S., Ripellino P., Roberts R. C., Rojas-Marcos I., Roodbol J., Rudnicki S. A., Sachs G. M., Samijn J. P. A., Santoro L., Schenone A., Tous M. J. S., Sheikh K. A., Silvestri N. J., Sundrup S. H., Sommer C., Stein B., Stino A. M., Thomma R. C. M., Twydell P., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Walgaard C., Wang Y., Willison H. J., Wirtz P. W., van Woerkom M., Zivkovic S. A., Arends, S, Drenthen, J, de Koning, L, van den Bergh, P, Hadden, R, Kuwabara, S, Reisin, R, Shahrizaila, N, Ajroud-Driss, S, Antonini, G, Attarian, S, Balducci, C, Bertorini, T, Brannagan, T, Cavaletti, G, Chao, C, Chavada, G, Dillmann, K, Dimachkie, M, Galassi, G, Gutierrez-Gutierrez, G, Harbo, T, Islam, B, Islam, Z, Katzberg, H, Kusunoki, S, Manganelli, F, Miller, J, Pardo, J, Pereon, Y, Rajabally, Y, Sindrup, S, Stettner, M, Uncini, A, Verhamme, C, Vytopil, M, Waheed, W, Jacobs, B, Cornblath, D, Addington, J, Badrising, U, Barroso, F, Bateman, K, Bella, I, Benedetti, L, van den Berg, B, Bhavaraju-Sanka, R, Briani, C, Buermann, J, Busby, M, Butterworth, S, Casasnovas, C, Chen, S, Claeys, K, Conti, E, Cosgrove, J, Dalakas, M, van Damme, P, Dardiotis, E, Davidson, A, Doets, A, van Doorn, P, Echaniz-Laguna, A, Eftimov, F, Faber, K, Fazio, R, Feasby, T, Fehmi, J, Fokke, C, Fujioka, T, Fulgenzi, E, Garssen, M, Gijsbers, C, Gilchrist, J, Gilhuis, J, Goldstein, J, Gorson, K, Goyal, N, Granit, V, Gutmann, L, Hartung, H, Holt, J, Hsieh, S, Htut, M, Hughes, R, Jerico-Pascual, I, Kaida, K, Karafiath, S, Khoshnoodi, M, Kiers, L, Kleiweg, R, Kokubun, N, Kolb, N, van Koningsveld, R, van der Kooi, A, Kramers, H, Kuitwaard, K, Kwan, J, Ladha, S, Lassen, L, Lawson, V, Lehmann, H, Cejas, L, Leonhard, S, Luijten, L, Lunn, M, Manji, H, Marfia, G, Infante, C, Martin-Aguilar, L, Martinez-Hernandez, E, Mataluni, G, Mattiazzi, M, Mcdermott, C, Meekins, G, Mohammad, Q, Monges, S, de la Tassa, G, Nascimbene, C, Nobile-Orazio, E, Nowak, R, Osei-Bonsu, M, Pelouto, F, Pulley, M, Gutierrez, L, Reddel, S, van der Ree, T, Rinaldi, S, Ripellino, P, Roberts, R, Rojas-Marcos, I, Roodbol, J, Rudnicki, S, Sachs, G, Samijn, J, Santoro, L, Schenone, A, Tous, M, Sheikh, K, Silvestri, N, Sundrup, S, Sommer, C, Stein, B, Stino, A, Thomma, R, Twydell, P, Varrato, J, Vermeij, F, Verschuuren, J, Visser, L, Walgaard, C, Wang, Y, Willison, H, Wirtz, P, van Woerkom, M, Zivkovic, S, Arends S., Drenthen J., de Koning L., van den Bergh P., Hadden R. D. M., Kuwabara S., Reisin R. C., Shahrizaila N., Ajroud-Driss S., Antonini G., Attarian S., Balducci C., Bertorini T., Brannagan T. H., Cavaletti G., Chao C. -C., Chavada G., Dillmann K. -U., Dimachkie M. M., Galassi G., Gutierrez-Gutierrez G., Harbo T., Islam B., Islam Z., Katzberg H., Kusunoki S., Manganelli F., Miller J. A. L., Pardo J., Pereon Y., Rajabally Y. A., Sindrup S., Stettner M., Uncini A., Verhamme C., Vytopil M., Waheed W., Jacobs B. C., Cornblath D. R., Addington J. M., Badrising U. A., Barroso F. A., Bateman K., Bella I., Benedetti L., van den Berg B., Bhavaraju-Sanka R., Briani C., Buermann J., Busby M., Butterworth S., Casasnovas C., Chen S., Claeys K., Conti E., Cosgrove J. S., Dalakas M., van Damme P., Dardiotis E., Davidson A., Doets A., van Doorn P., Echaniz-Laguna A., Eftimov F., Faber K. G., Fazio R., Feasby T. E., Fehmi J., Fokke C., Fujioka T., Fulgenzi E., Garssen M. P. J., Gijsbers C. J., Gilchrist J. M., Gilhuis J., Goldstein J. M., Gorson K. C., Goyal N., Granit V., Gutmann L., Hartung H. -P., Holt J. K. L., Hsieh S. -T., Htut M., Hughes R. A. C., Jerico-Pascual I., Kaida K., Karafiath S., Khoshnoodi M. A., Kiers L., Kleiweg R. P., Kokubun N., Kolb N. A., van Koningsveld R., van der Kooi A. J., Kramers H., Kuitwaard K., Kwan J. Y., Ladha S. S., Lassen L. L., Lawson V. H., Lehmann H., Cejas L. L., Leonhard S. E., Luijten L., Lunn M. P. T., Manji H., Marfia G. A., Infante C. M., Martin-Aguilar L., Martinez-Hernandez E., Mataluni G., Mattiazzi M., McDermott C., Meekins G., Mohammad Q. D., Monges S., de la Tassa G. M., Nascimbene C., Nobile-Orazio E., Nowak R. J., Osei-Bonsu M., Pelouto F., Pulley M. T., Gutierrez L. Q., Reddel S. W., van der Ree T., Rinaldi S., Ripellino P., Roberts R. C., Rojas-Marcos I., Roodbol J., Rudnicki S. A., Sachs G. M., Samijn J. P. A., Santoro L., Schenone A., Tous M. J. S., Sheikh K. A., Silvestri N. J., Sundrup S. H., Sommer C., Stein B., Stino A. M., Thomma R. C. M., Twydell P., Varrato J. D., Vermeij F. H., Verschuuren J., Visser L. H., Walgaard C., Wang Y., Willison H. J., Wirtz P. W., van Woerkom M., and Zivkovic S. A.

Abstract

Background and purpose: Various electrodiagnostic criteria have been developed in Guillain–Barré syndrome (GBS). Their performance in a broad representation of GBS patients has not been evaluated. Motor conduction data from the International GBS Outcome Study (IGOS) cohort were used to compare two widely used criterion sets and relate these to diagnostic amyotrophic lateral sclerosis criteria. Methods: From the first 1500 patients in IGOS, nerve conduction studies from 1137 (75.8%) were available for the current study. These patients were classified according to nerve conduction studies criteria proposed by Hadden and Rajabally. Results: Of the 1137 studies, 68.3% (N = 777) were classified identically according to criteria by Hadden and Rajabally: 111 (9.8%) axonal, 366 (32.2%) demyelinating, 195 (17.2%) equivocal, 35 (3.1%) inexcitable and 70 (6.2%) normal. Thus, 360 studies (31.7%) were classified differently. The areas of differences were as follows: 155 studies (13.6%) classified as demyelinating by Hadden and axonal by Rajabally; 122 studies (10.7%) classified as demyelinating by Hadden and equivocal by Rajabally; and 75 studies (6.6%) classified as equivocal by Hadden and axonal by Rajabally. Due to more strictly defined cutoffs fewer patients fulfilled demyelinating criteria by Rajabally than by Hadden, making more patients eligible for axonal or equivocal classification by Rajabally. In 234 (68.6%) axonal studies by Rajabally the revised El Escorial (amyotrophic lateral sclerosis) criteria were fulfilled; in axonal cases by Hadden this was 1.8%. Conclusions and discussion: This study shows that electrodiagnosis in GBS is dependent on the criterion set utilized, both of which are based on expert opinion. Reappraisal of electrodiagnostic subtyping in GBS is warranted.

Published
2024

3. DSP-01 conversion from PLS to ALS: a Dutch cohort study.

Author

McFarlane, R., Domhnaill, É.M., Al-Chalabi, A., van den Berg, L., de Carvalho, M., Chio, A., Corcia, P., van Damme, P., McDermott, C., Ingre, C., Povedanos, M., Galvin, M., Hardiman, O., Ciepielewska, M., Chandak, A., Khachatryan, A., Lavu, A., Silva, P.D., Novak, J.C., and Zhang, J.

Subjects
CHRONIC inflammatory demyelinating polyradiculoneuropathy, SPINOCEREBELLAR ataxia, SPINAL muscular atrophy, AUTOMATIC speech recognition, CEREBRAL cortical thinning, INDUCED pluripotent stem cells
Abstract

The document delves into multiple studies on Amyotrophic Lateral Sclerosis (ALS) and Frontotemporal Degeneration, focusing on topics such as disease diagnosis, patient stratification, and understanding disease mechanisms. It discusses the importance of biomarkers, autonomic nervous function, and astrocyte pathology in ALS research and clinical trials. Additionally, the research explores genetic risk factors, respiratory impairments, and the impact of genetic polymorphisms on survival in ALS and FTD patients, aiming to improve prognosis and management of these neurodegenerative diseases. [Extracted from the article]

Published
2024
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9. Development and pilot testing of a web-based decision aid for people with motor neurone disease considering a gastrostomy tube (DiAMoND Study)

Author

Wheelwright, S., primary, Maunsell, R., additional, Taylor, S., additional, Drinkwater, N., additional, Erridge, C., additional, Foster, C., additional, Hardcastle, M., additional, Hogden, A., additional, Lawson, I., additional, Lisiecka, D., additional, McDermott, C., additional, Morrison, K., additional, Muir, C., additional, Recio-Saucedo, A., additional, and White, S., additional

Published
2023
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22. Development of ‘gastrostomy tube–is it for me?’, a web-based patient decision aid for people living with motor neurone disease considering having a gastrostomy tube placed

Author

Wheelwright, S, Maunsell, R, Taylor, S, Drinkwater, N, Erridge, C, Foster, C, Hardcastle, M, Hogden, A ; https://orcid.org/0000-0002-4317-7960, Lawson, I, Lisiecka, D, McDermott, C, Morrison, KE, Muir, C, Recio-Saucedo, A, White, S, Wheelwright, S, Maunsell, R, Taylor, S, Drinkwater, N, Erridge, C, Foster, C, Hardcastle, M, Hogden, A ; https://orcid.org/0000-0002-4317-7960, Lawson, I, Lisiecka, D, McDermott, C, Morrison, KE, Muir, C, Recio-Saucedo, A, and White, S

Abstract

Objective: To develop and pilot a web-based patient decision aid (PDA) to support people living with motor neurone disease (plwMND) considering having a gastrostomy tube placed. Methods: In Phase 1, content and design were informed by semi-structured interviews, literature reviews and a prioritization survey. In Phase 2, the prototype PDA was tested with users and developed iteratively with feedback from surveys and ‘think-aloud’ interviews. Phase 1 and 2 participants were plwMND, carers and healthcare professionals (HCPs). In Phase 3, the PDA was evaluated by plwMND using validated questionnaires and HCPs provided feedback in focus groups. Results: Sixteen plwMND, 16 carers and 25 HCPs took part in Phases 1 and 2. Interviews and the literature review informed a prioritization survey with 82 content items. Seventy-seven per cent (63/82) of the content of the PDA was retained. A prototype PDA, which conforms to international standards, was produced and improved during Phase 2. In Phase 3, 17 plwMND completed questionnaires after using the PDA. Most plwMND (94%) found the PDA completely acceptable and would recommend it to others in their position, 88% had no decisional conflict, 82% were well prepared and 100% were satisfied with their decision-making. Seventeen HCPs provided positive feedback and suggestions for use in clinical practice. Conclusion: Gastrostomy Tube: Is it for me? was co-produced with stakeholders and found to be acceptable, practical and useful. Freely available from the MND Association website, the PDA is a valuable tool to support the shared decision-making process for gastrostomy tube placement.

Published
2023

23. Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis

Author

Coates, E., Zarotti, N., Williams, I., White, S., Halliday, V., Beever, D., Hackney, G., Stavroulakis, T., White, D., Norman, P., McDermott, C., Coates, E., Zarotti, N., Williams, I., White, S., Halliday, V., Beever, D., Hackney, G., Stavroulakis, T., White, D., Norman, P., and McDermott, C.

Abstract

Objectives Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals. Methods Interviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF). Results All three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite). Discussion To promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities

Published
2023

24. Development of ‘gastrostomy tube – is it for me?’, a web-based patient decision aid for people living with motor neurone disease considering having a gastrostomy tube placed

Author

Wheelwright, S., primary, Maunsell, R., additional, Taylor, S., additional, Drinkwater, N., additional, Erridge, C., additional, Foster, C., additional, Hardcastle, M., additional, Hogden, A., additional, Lawson, I., additional, Lisiecka, D., additional, Mcdermott, C., additional, Morrison, K.E., additional, Muir, C., additional, Recio-Saucedo, A., additional, and White, S., additional

Published
2023
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26. Development of ‘gastrostomy tube – Is it for me?’: a web-based patient decision aid for people living with motor neurone disease considering having a gastrostomy tube placed

Author

Wheelwright, S., Maunsell, R., Taylor, S., Drinkwater, N., Erridge, C., Foster, C., Hardcastle, M., Hogden, A., Lawson, I., Lisiecka, D., Mcdermott, C., Morrison, K.E., Muir, C., Recio-Saucedo, A., and White, S.

Abstract

Objective: To develop and pilot a web-based patient decision aid (PDA) to support people living with motor neurone disease (plwMND) considering having a gastrostomy tube placed. Methods: In Phase 1, content and design were informed by semi-structured interviews, literature reviews and a prioritization survey. In Phase 2, the prototype PDA was tested with users and developed iteratively with feedback from surveys and ‘think-aloud’ interviews. Phase 1 and 2 participants were plwMND, carers and healthcare professionals (HCPs). In Phase 3, the PDA was evaluated by plwMND using validated questionnaires and HCPs provided feedback in focus groups. Results: Sixteen plwMND, 16 carers and 25 HCPs took part in Phases 1 and 2. Interviews and the literature review informed a prioritization survey with 82 content items. Seventy-seven per cent (63/82) of the content of the PDA was retained. A prototype PDA, which conforms to international standards, was produced and improved during Phase 2. In Phase 3, 17 plwMND completed questionnaires after using the PDA. Most plwMND (94%) found the PDA completely acceptable and would recommend it to others in their position, 88% had no decisional conflict, 82% were well prepared and 100% were satisfied with their decision-making. Seventeen HCPs provided positive feedback and suggestions for use in clinical practice. Conclusion: Gastrostomy Tube: Is it for me? was co-produced with stakeholders and found to be acceptable, practical and useful. Freely available from the MND Association website, the PDA is a valuable tool to support the shared decision-making process for gastrostomy tube placement.

Published
2023

30. Lung ultrasound for the early diagnosis of COVID-19 pneumonia: an international multicenter study

Author

Volpicelli, G., Gargani, L., Perlini, S., Spinelli, S., Barbieri, G., Lanotte, A., Casasola, G. G., Nogue-Bou, R., Lamorte, A., Agricola, E., Villen, T., Deol, P. S., Nazerian, P., Corradi, F., Stefanone, V., Fraga, D. N., Navalesi, P., Ferre, R., Boero, E., Martinelli, G., Cristoni, L., Perani, C., Vetrugno, L., Mcdermott, C., Miralles-Aguiar, F., Secco, G., Zattera, C., Salinaro, F., Grignaschi, A., Boccatonda, A., Giostra, F., Infante, M. N., Covella, M., Ingallina, G., Burkert, J., Frumento, P., Forfori, F., Ghiadoni, L., Fraccalini, T., Vendrame, A., Basile, V., Cipriano, A., Frassi, F., Santini, M., Falcone, M., Menichetti, F., Barcella, B., Delorenzo, M., Resta, F., Vezzoni, G., Bonzano, M., Briganti, D. F., Cappa, G., Zunino, I., Demitry, L., Vignaroli, D., Dipietro, L. S. S., Bazzini, M., Capozza, V., Gonzalez, M. M., Gibal, R. V., Ibarz, R. P., Alfaro, L. M., Alfaro, C. M., Alins, M. G., Brown, A., Dunlop, H., Ralli, M. L., Persona, P., Russel, F. M., Pang, P. S., Rovida, S., Deana, C., Franchini, D., Gargani, Luna, Volpicelli, G., Gargani, L., Perlini, S., Spinelli, S., Barbieri, G., Lanotte, A., Casasola, G. G., Nogue-Bou, R., Lamorte, A., Agricola, E., Villen, T., Deol, P. S., Nazerian, P., Corradi, F., Stefanone, V., Fraga, D. N., Navalesi, P., Ferre, R., Boero, E., Martinelli, G., Cristoni, L., Perani, C., Vetrugno, L., Mcdermott, C., Miralles-Aguiar, F., Secco, G., Zattera, C., Salinaro, F., Grignaschi, A., Boccatonda, A., Giostra, F., Infante, M. N., Covella, M., Ingallina, G., Burkert, J., Frumento, P., Forfori, F., Ghiadoni, L., Fraccalini, T., Vendrame, A., Basile, V., Cipriano, A., Frassi, F., Santini, M., Falcone, M., Menichetti, F., Barcella, B., Delorenzo, M., Resta, F., Vezzoni, G., Bonzano, M., Briganti, D. F., Cappa, G., Zunino, I., Demitry, L., Vignaroli, D., Dipietro, L. S. S., Bazzini, M., Capozza, V., Gonzalez, M. M., Gibal, R. V., Ibarz, R. P., Alfaro, L. M., Alfaro, C. M., Alins, M. G., Brown, A., Dunlop, H., Ralli, M. L., Persona, P., Russel, F. M., Pang, P. S., Rovida, S., Deana, C., and Franchini, D.

Subjects
Adult, medicine.medical_specialty, Multivariate analysis, Letter, Coronavirus disease 2019 (COVID-19), Original, COVID-19, Interstitial pneumonia, Lung ultrasound, SARS-CoV-2, Critical Care and Intensive Care Medicine, 03 medical and health sciences, 0302 clinical medicine, Anesthesiology, Internal medicine, medicine, Humans, Lung, Aged, Ultrasonography, business.industry, 030208 emergency & critical care medicine, Odds ratio, Middle Aged, medicine.disease, Confidence interval, Pneumonia, Early Diagnosis, 030228 respiratory system, Respiratory failure, Observational study, business
Abstract

Purpose To analyze the application of a lung ultrasound (LUS)-based diagnostic approach to patients suspected of COVID-19, combining the LUS likelihood of COVID-19 pneumonia with patient’s symptoms and clinical history. Methods This is an international multicenter observational study in 20 US and European hospitals. Patients suspected of COVID-19 were tested with reverse transcription-polymerase chain reaction (RT-PCR) swab test and had an LUS examination. We identified three clinical phenotypes based on pre-existing chronic diseases (mixed phenotype), and on the presence (severe phenotype) or absence (mild phenotype) of signs and/or symptoms of respiratory failure at presentation. We defined the LUS likelihood of COVID-19 pneumonia according to four different patterns: high (HighLUS), intermediate (IntLUS), alternative (AltLUS), and low (LowLUS) probability. The combination of patterns and phenotypes with RT-PCR results was described and analyzed. Results We studied 1462 patients, classified in mild (n = 400), severe (n = 727), and mixed (n = 335) phenotypes. HighLUS and IntLUS showed an overall sensitivity of 90.2% (95% CI 88.23–91.97%) in identifying patients with positive RT-PCR, with higher values in the mixed (94.7%) and severe phenotype (97.1%), and even higher in those patients with objective respiratory failure (99.3%). The HighLUS showed a specificity of 88.8% (CI 85.55–91.65%) that was higher in the mild phenotype (94.4%; CI 90.0–97.0%). At multivariate analysis, the HighLUS was a strong independent predictor of RT-PCR positivity (odds ratio 4.2, confidence interval 2.6–6.7, p

Published
2021

31. Theme 09 - Clinical Trials and Trial Design.

Author

Katz, J., Vu, T., Chiò, A., McDermott, C., Devos, D., Gordon, G., Johnston, M., Maier, J., Trimmer, J., Tansy, A., Shefner, J., Angela Genge, A., Boggs, B., Ganti, R., Hinckley, S., Johnson, K., Kaneb, H., Polzer, J., Rubino, S., and Salmon, K.

Subjects
EXPERIMENTAL design, AMYOTROPHIC lateral sclerosis, LIBRARY users, RESEARCH personnel, LIBRARY resources
Abstract

The text is a report on clinical trials and trial design in the field of Amyotrophic Lateral Sclerosis (ALS) and Frontotemporal Degeneration (FTD). It is authored by a large number of researchers and experts in the field. The report provides a comprehensive overview of ongoing clinical trials, trial design considerations, and potential future directions for research in ALS and FTD. [Extracted from the article]

Published
2023
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32. Theme 11 - Cognitive and Psychological Assessment and Support.

Author

Björkquist, M., Klem Olesen, L., la Cour, K., With, H., Handberg, C., Mioshi, E., Grant, K., Shepstone, L., Nikolajevic-Pujic, S., Knudsen, L., Malmström, N., Jakobsson Larsson, B., Nilsson, S., Öhlén, J., Nygren, I., Andersen, P., Ozanne, A., Appleby, N., Mayberry, E., and McDermott, C.

Subjects
PSYCHOLOGICAL tests, AMYOTROPHIC lateral sclerosis
Abstract

This document, titled "Theme 11 - Cognitive and Psychological Assessment and Support," is a research article published in the journal Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration. It features a large number of authors from various institutions and countries. The article focuses on the assessment and support of cognitive and psychological aspects in individuals with amyotrophic lateral sclerosis (ALS) and frontotemporal degeneration (FTD). It provides valuable insights into the cognitive and psychological challenges faced by individuals with these conditions and highlights the importance of comprehensive assessment and support in managing their care. [Extracted from the article]

Published
2023
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33. Theme 01 - Epidemiology and Informatics.

Author

Opie-Martin, S., Bredin, A., Grey, E., Talbot, K., Al-Chalabi, A., McFarlane, R., Caravaca Puchades, A., Chio, A., Corcia, P., Galvin, M., Heverin, M., Hobin, F., Holmdahl, O., Ingre, C., Lamaire, N., Mac Domhnaill, É., McDonough, H., Manera, U., McDermott, C., and Mouzouri, M.

Subjects
AMYOTROPHIC lateral sclerosis, EPIDEMIOLOGY, LIBRARY users, NEURODEGENERATION
Abstract

The document titled "Theme 01 - Epidemiology and Informatics" provides a comprehensive overview of research conducted by multiple authors on the topics of amyotrophic lateral sclerosis (ALS) and frontotemporal degeneration (FTD). The authors explore various aspects of these neurodegenerative diseases, including epidemiology, informatics, and clinical characteristics. The document features a wide range of contributors from different countries, highlighting the global nature of ALS and FTD research. This resource would be valuable for library patrons interested in studying the epidemiology and informatics of ALS and FTD. [Extracted from the article]

Published
2023
Full Text
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44. Predictive genetic testing for Motor neuron disease: time for a guideline?

Author

McNeill, A, Amador, M-D-M, Bekker, H, Clarke, A, Crook, A, Cummings, C, McEwen, A, McDermott, C, Quarrell, O, Renieri, A, Roggenbuck, J, Salmon, K, Volk, A, Weishaupt, J, International Alliance of ALS/MND Associations, McNeill, A, Amador, M-D-M, Bekker, H, Clarke, A, Crook, A, Cummings, C, McEwen, A, McDermott, C, Quarrell, O, Renieri, A, Roggenbuck, J, Salmon, K, Volk, A, Weishaupt, J, and International Alliance of ALS/MND Associations

Published
2022

47. The nutritional management of people living with Amyotrophic Lateral Sclerosis (ALS): a cross-sectional survey of UK Dietitians’

Author

White, S., primary, Zarotti, N., additional, Beever, D., additional, Bradburn, M., additional, Norman, P., additional, Coates, E., additional, Stavroulakis, T., additional, White, D., additional, McGeachan, A., additional, Williams, I.A., additional, Hackney, G., additional, Halliday, V., additional, and McDermott, C., additional

Published
2022
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48. Understanding the current nutritional management for people with amyotrophic lateral sclerosis - a mapping review

Author

Essat, M., Coates, E., Clowes, M., Beever, D., Hackney, G., White, S., Stavroulakis, T., Halliday, V., McDermott, C., and HighCALS group, (The)

Abstract

Background & Aims\ud \ud Poor nutritional outcomes are observed in people with Amyotrophic Lateral Sclerosis (pwALS) including weight loss and poor dietary intake. Surveys of healthcare professionals have highlighted the lack of evidence and knowledge regarding nutritional management of ALS throughout the disease course. Furthermore, national evidence-based guidance is lacking. This mapping review aims to understand the structure and input of nutritional management services for pwALS.\ud \ud \ud \ud Methods\ud \ud Systematic searches were conducted across eight electronic databases to identify qualitative and quantitative research on structure and input of nutritional care in ALS. Supplementary searches included grey literature, citation and reference list searching of included studies and key reviews, web searching and contacting experts and organisations that provide ALS services to identify guidelines. Study selection and data extraction were undertaken independently by at least two reviewers. Data was synthesised using a narrative approach.\ud \ud \ud \ud Results\ud \ud One hundred and nine documents were identified. These consisted of journal articles, guidelines and related documents that contributed evidence towards mapping of nutritional management of pwALS. No evidence on commissioning of nutritional care was identified. Guidelines provided high-level overviews and gave general guidance or recommendations for care; however, these typically focused on gastrostomy with limited guidance on broader aspects, including oral nutrition support. Evidence from primary studies found nutritional care delivery in ALS consisted of multiple types of nutritional management, at different time points during the disease course and involving a range of professionals. There was little evidence relating to proactive nutritional care. Details of healthcare setting, number of professionals involved in care, team composition and how services were delivered in community settings were sparse. Although the role of the speech and language therapist in swallowing assessment and provision of advice on the management of swallowing difficulties was consistent; there was limited evidence on care provided by dietitians. In addition, a small number of studies reported on the use of screening tools. Overall, evidence was consistent that weight management, including monitoring of weight change by professionals and patients, was central and recommended that this should be part of nutritional assessment and follow-up.\ud \ud \ud \ud Conclusions\ud \ud The evidence identified in this mapping review has highlighted the requirement for further primary research providing specific details on how nutritional management of pwALS is structured and delivered.

Published
2022

49. Telehealth in long-term neurological conditions: the potential, the challenges and the key recommendations

Author

Knox, L., McDermott, C., and Hobson, E.

Subjects
Activities of Daily Living, Biomedical Engineering, Quality of Life, Humans, Disabled Persons, General Medicine, Telemedicine
Abstract

Long-term neurological conditions (LTNCs) cause physical and psychological symptoms that have a significant impact on activities of daily living and quality of life. Multidisciplinary teams are effective at providing treatment for people with LTNCs; however, access to such services by people with disabilities can be difficult and as a result, good quality care is not universal. One potential solution is telehealth. This review describes the potential of telehealth to support people with LTNCs, the challenges of designing and implementing these systems, and the key recommendations for those involved in telehealth to facilitate connected services that can benefit patients, carers and healthcare professionals. These recommendations include understanding the problems posed by LTNCs and the needs of the end-user through a person-centred approach. We discuss how to work collaboratively and use shared learning, and consider how to effectively evaluate the intervention at every stage of the development process.

Published
2022

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