Pub Date : 2025-01-01DOI: 10.1016/j.sedene.2024.01.001
Eulalia Gine-Cipres , Marta Torres Ferrus , Victor J. Gallardo , Alicia Alpuente Ruiz , Edoardo Caronna , Patricia Pozo-Rosich
Introduction
Headache is a very common neurological symptom. It is the first reason for consultation in neurology. About hospitalized patients, we do not have epidemiological data on the global prevalence of headaches in hospitalized patients.
Objective
To describe the prevalence of headaches in hospitalized patients, their triggers, and the level of compliance with nursing records.
Methodology
This is a descriptive, observational, and cross-sectional study at the Vall d’Hebron University Hospital (HUVH). The data collected were sociodemographic, related to the reason for admission and pain during admission. Statistical analysis was performed with R v4.1.1.
Results
Of the 45 admitted patients, 55% (25/45) participated, 55% (25/45) participated, 64% (16/25) were women. 60% (15/25) had presented headaches during admission, of which 73.3% (11/15) occurred in the last 24 hours. The 33.3% (5/15) recognized stress as the most frequent trigger, noise (5/15), and income derivatives (3/15). During the daily follow-up by the nurse, 100% (25/25) of the patients answered that they had been asked about pain in general and 32% (8/25) specifically about headaches. No records were obtained due to the computer program's non-existence of nursing clinical variables.
Conclussion
Headache is a symptom that occurs prevalently in hospitalized patients. Stress and noise seem to be triggers of this situation. Certain behaviors on the part of health centers and professionals could help improve the care of these patients.
{"title":"Evaluación de la calidad y manejo de la cefalea en un paciente ingresado en el área de Neurociencia. Estudio CALMA","authors":"Eulalia Gine-Cipres , Marta Torres Ferrus , Victor J. Gallardo , Alicia Alpuente Ruiz , Edoardo Caronna , Patricia Pozo-Rosich","doi":"10.1016/j.sedene.2024.01.001","DOIUrl":"10.1016/j.sedene.2024.01.001","url":null,"abstract":"<div><h3>Introduction</h3><div>Headache is a very common neurological symptom. It is the first reason for consultation in neurology. About hospitalized patients, we do not have epidemiological data on the global prevalence of headaches in hospitalized patients.</div></div><div><h3>Objective</h3><div>To describe the prevalence of headaches in hospitalized patients, their triggers, and the level of compliance with nursing records.</div></div><div><h3>Methodology</h3><div>This is a descriptive, observational, and cross-sectional study at the Vall d’Hebron University Hospital (HUVH). The data collected were sociodemographic, related to the reason for admission and pain during admission. Statistical analysis was performed with R v4.1.1.</div></div><div><h3>Results</h3><div>Of the 45 admitted patients, 55% (25/45) participated, 55% (25/45) participated, 64% (16/25) were women. 60% (15/25) had presented headaches during admission, of which 73.3% (11/15) occurred in the last 24<!--> <!-->hours. The 33.3% (5/15) recognized stress as the most frequent trigger, noise (5/15), and income derivatives (3/15). During the daily follow-up by the nurse, 100% (25/25) of the patients answered that they had been asked about pain in general and 32% (8/25) specifically about headaches. No records were obtained due to the computer program's non-existence of nursing clinical variables.</div></div><div><h3>Conclussion</h3><div>Headache is a symptom that occurs prevalently in hospitalized patients. Stress and noise seem to be triggers of this situation. Certain behaviors on the part of health centers and professionals could help improve the care of these patients.</div></div>","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"61 ","pages":"Article 100159"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140405070","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01DOI: 10.1016/j.sedene.2025.500175
Paloma Muñoz Pedrazuela , Henar Garzón López , Ana Sofía Fernandes Ribeiro , Alejandro Lendínez Mesa , Maria Palanca Cámara , Tania Herrera Barcia , Eulàlia Giné-Ciprés , Raquel Vallejo de la Paz , Lourdes Bermelló López , Silvia Morel Fernández , Ana María Duro Martínez , Sergio González-Román Montalbán , Maria Figueras Jiménez , Verónica Hidalgo Benítez , David Iglesias Villanueva , Paloma Caro Muñoz , Fidel López Espuela
{"title":"Resumen del XXXI Congreso Anual y VII Congreso Internacional de la Sociedad Española de Enfermería Neurológica","authors":"Paloma Muñoz Pedrazuela , Henar Garzón López , Ana Sofía Fernandes Ribeiro , Alejandro Lendínez Mesa , Maria Palanca Cámara , Tania Herrera Barcia , Eulàlia Giné-Ciprés , Raquel Vallejo de la Paz , Lourdes Bermelló López , Silvia Morel Fernández , Ana María Duro Martínez , Sergio González-Román Montalbán , Maria Figueras Jiménez , Verónica Hidalgo Benítez , David Iglesias Villanueva , Paloma Caro Muñoz , Fidel López Espuela","doi":"10.1016/j.sedene.2025.500175","DOIUrl":"10.1016/j.sedene.2025.500175","url":null,"abstract":"","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"61 ","pages":"Article 500175"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143309299","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01DOI: 10.1016/j.sedene.2024.03.002
Anibal Arteaga-Noriega , John Fredy Castro-Álvarez , José Zapata-Berruecos , Norma Liliana Muñoz Osorio , Johanna Gutiérrez-Vargas
Introduction
The identification of biomarkers of disease progression continues to be a necessity in the approach to multiple sclerosis (MS), a disabling neurological disease more common in young adults, which can have different phenotypes, among which the more notable are: relapsing-remitting, primary progressive and secondary progressive. Among biomarkers, the determination of neurofilament light chain (NfL) levels in both cerebrospinal fluid and serum have been shown to predict the severity of MS. Therefore, the objective of the present work was to evaluate the levels of NfL in patients in different stages of MS.
Methodology
A descriptive study was carried out, which included 70 patients diagnosed with MS; plasma NfL levels were analyzed using the adsorption enzyme immunoassay kit and the levels of the MS patients were compared with the levels of control patients.
Results
In patients with MS, 87,14% were women, 21,43% were taking antidepressant drugs, 48,57% had vision complications, and 80% had spinal injuries. It was found that patients with relapsing-remitting phenotype and of male sex have higher levels of NfL.
Conclusions
The results show an increase in NfL in relapsing-remitting phenotype and in male patients, which suggests that there may be greater neuroaxonal deterioration in men and that they have this disease phenotype. However, future studies aimed at optimizing, standardizing, and implementing new technologies are necessary to address the predictive value of these biomarkers that can contribute to the management of the disease.
{"title":"Evaluación de los neurofilamentos de cadena ligera en plasma como biomarcador de daño neuronal en la esclerosis múltiple","authors":"Anibal Arteaga-Noriega , John Fredy Castro-Álvarez , José Zapata-Berruecos , Norma Liliana Muñoz Osorio , Johanna Gutiérrez-Vargas","doi":"10.1016/j.sedene.2024.03.002","DOIUrl":"10.1016/j.sedene.2024.03.002","url":null,"abstract":"<div><h3>Introduction</h3><div>The identification of biomarkers of disease progression continues to be a necessity in the approach to multiple sclerosis (MS), a disabling neurological disease more common in young adults, which can have different phenotypes, among which the more notable are: relapsing-remitting, primary progressive and secondary progressive. Among biomarkers, the determination of neurofilament light chain (NfL) levels in both cerebrospinal fluid and serum have been shown to predict the severity of MS. Therefore, the objective of the present work was to evaluate the levels of NfL in patients in different stages of MS.</div></div><div><h3>Methodology</h3><div>A descriptive study was carried out, which included 70 patients diagnosed with MS; plasma NfL levels were analyzed using the adsorption enzyme immunoassay kit and the levels of the MS patients were compared with the levels of control patients<strong>.</strong></div></div><div><h3>Results</h3><div>In patients with MS, 87,14% were women, 21,43% were taking antidepressant drugs, 48,57% had vision complications, and 80% had spinal injuries. It was found that patients with relapsing-remitting phenotype and of male sex have higher levels of NfL.</div></div><div><h3>Conclusions</h3><div>The results show an increase in NfL in relapsing-remitting phenotype and in male patients, which suggests that there may be greater neuroaxonal deterioration in men and that they have this disease phenotype. However, future studies aimed at optimizing, standardizing, and implementing new technologies are necessary to address the predictive value of these biomarkers that can contribute to the management of the disease.</div></div>","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"61 ","pages":"Article 100162"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140782905","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01DOI: 10.1016/j.sedene.2024.03.001
Patricia Blázquez-González , Rubén Mirón-González , Alejandro Lendínez-Mesa , María Teresa Camacho Arroyo , Noelia Mancebo-Salas , Raquel Luengo-González , Silvia Herranz-Herranz , Roberto Antonio López Manrique , Jose Luis Cobo-Sánchez , Zulema González-Gancedo , María-Nieves Moro-Tejedor
Objective
To evaluate the effectiveness of virtual reality on the degree of Health Literacy, before and after the use of virtual reality with the Nintendo Switch® device in patients with a diagnosis of stroke admitted to neurorehabilitation units.
Methodology
Twelve patients admitted to a neurorehabilitation unit underwent a 1:3 randomised clinical trial (intervention group: control group). The intervention group consisted of 4 patients and the control group consisted of 8 patients. The control group performed conventional rehabilitation and the intervention group, in addition to conventional rehabilitation, had a 20-minute virtual reality intervention once a week for 6 weeks. Clinical outcomes were measured for the literacy variable before the intervention and 6 weeks after the intervention in both the control group and the intervention group.
Results
An improvement in literacy was obtained in the control group (9 vs 9.38; p = 0.18) and in the intervention group (13.75 vs 14.25; p = 0.31) after the 6 weeks duration of the study. Comparing the intervention group and the control group, the literacy level of the intervention group was higher after the intervention than in the CG (14.25 vs. 9.38: p = 0.20), but no statistically significant results were obtained.
Conclusion
Virtual reality used together with conventional treatment seems to improve the degree of literacy of stroke patients admitted to neurorehabilitation units.
{"title":"Eficacia de la realidad virtual en el grado de Alfabetización en Salud en los pacientes con ictus: ensayo clínico piloto aleatorizado","authors":"Patricia Blázquez-González , Rubén Mirón-González , Alejandro Lendínez-Mesa , María Teresa Camacho Arroyo , Noelia Mancebo-Salas , Raquel Luengo-González , Silvia Herranz-Herranz , Roberto Antonio López Manrique , Jose Luis Cobo-Sánchez , Zulema González-Gancedo , María-Nieves Moro-Tejedor","doi":"10.1016/j.sedene.2024.03.001","DOIUrl":"10.1016/j.sedene.2024.03.001","url":null,"abstract":"<div><h3>Objective</h3><div>To evaluate the effectiveness of virtual reality on the degree of Health Literacy, before and after the use of virtual reality with the Nintendo Switch® device in patients with a diagnosis of stroke admitted to neurorehabilitation units.</div></div><div><h3>Methodology</h3><div>Twelve patients admitted to a neurorehabilitation unit underwent a 1:3 randomised clinical trial (intervention group: control group). The intervention group consisted of 4 patients and the control group consisted of 8 patients. The control group performed conventional rehabilitation and the intervention group, in addition to conventional rehabilitation, had a 20-minute virtual reality intervention once a week for 6 weeks. Clinical outcomes were measured for the literacy variable before the intervention and 6 weeks after the intervention in both the control group and the intervention group.</div></div><div><h3>Results</h3><div>An improvement in literacy was obtained in the control group (9 vs 9.38; p<!--> <!-->=<!--> <!-->0.18) and in the intervention group (13.75 vs 14.25; p<!--> <!-->=<!--> <!-->0.31) after the 6 weeks duration of the study. Comparing the intervention group and the control group, the literacy level of the intervention group was higher after the intervention than in the CG (14.25 vs. 9.38: p<!--> <!-->=<!--> <!-->0.20), but no statistically significant results were obtained.</div></div><div><h3>Conclusion</h3><div>Virtual reality used together with conventional treatment seems to improve the degree of literacy of stroke patients admitted to neurorehabilitation units.</div></div>","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"61 ","pages":"Article 100161"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140757607","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01DOI: 10.1016/j.sedene.2023.09.001
Jesús Sánchez-Lozano , Sandra Martínez-Pizarro
Introduction
Dementia affects fifty million individuals worldwide. It includes emotional problems and decreased motivation that interfere with daily life. In recent years, art therapy has been proposed to improve the physical and psychological well-being of these patients.
Objective
The objective of this review is to update the information on the efficacy of art therapy in the cognitive and psychological well-being of patients with dementia.
Method
A bibliographic search was carried out in Pubmed, Lilacs, IBECS and CENTRAL databases following the PRISMA recommendations. Studies conducted in the last 5 years, in Spanish or English, with full text and high methodological quality are selected.
Results
Art therapy with painting, visual art therapy, visual arts education program and remote expressive arts program are effective in patients with dementia. The total number of studies in the review was five. The frequency of the sessions was one per week, the total number of sessions was 8–12, and the duration of the program ranged from 6 to 12 weeks.
Conclusion
There are few quality art therapy items that have been shown to be effective for the patient and their caregiver. However, some reviewed studies show some kind of benefit in cognitive and psychological well-being and quality of life. For this reason, research in this field must be increased.
{"title":"Arteterapia en la mejora del bienestar cognitivo en pacientes con demencia. Revisión de la literatura","authors":"Jesús Sánchez-Lozano , Sandra Martínez-Pizarro","doi":"10.1016/j.sedene.2023.09.001","DOIUrl":"10.1016/j.sedene.2023.09.001","url":null,"abstract":"<div><h3>Introduction</h3><div>Dementia affects fifty million individuals worldwide. It includes emotional problems and decreased motivation that interfere with daily life. In recent years, art therapy has been proposed to improve the physical and psychological well-being of these patients.</div></div><div><h3>Objective</h3><div>The objective of this review is to update the information on the efficacy of art therapy in the cognitive and psychological well-being of patients with dementia.</div></div><div><h3>Method</h3><div>A bibliographic search was carried out in Pubmed, Lilacs, IBECS and CENTRAL databases following the PRISMA recommendations. Studies conducted in the last 5 years, in Spanish or English, with full text and high methodological quality are selected.</div></div><div><h3>Results</h3><div>Art therapy with painting, visual art therapy, visual arts education program and remote expressive arts program are effective in patients with dementia. The total number of studies in the review was five. The frequency of the sessions was one per week, the total number of sessions was 8–12, and the duration of the program ranged from 6 to 12 weeks.</div></div><div><h3>Conclusion</h3><div>There are few quality art therapy items that have been shown to be effective for the patient and their caregiver. However, some reviewed studies show some kind of benefit in cognitive and psychological well-being and quality of life. For this reason, research in this field must be increased.</div></div>","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"61 ","pages":"Article 100154"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140464179","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01DOI: 10.1016/j.sedene.2024.05.001
Teresa Marco Galindo, Santiago Fernandez Fernandez, Victor Obach Baurier, Neus Fabregat Fabra
Objective
To analyze the impact of implementing a therapeutic education (TE) program for patients with chronic migraine.
Method
Prospective longitudinal intervention and assessment study before and after the program, lasting 6 months, conducted at the Headache and Facial Pain Unit of Hospital Clinic in Barcelona.
Results
TE resulted in a significant improvement in the frequency of headache days per month, DCM (15.6 ± 6.84 vs. 11.5 ± 4.68; p < 0.001), migraine days per month, DMM (7.38 ± 1.44 vs. 5.88 ± 1.36; p < 0.001), and increased perception of quality of life, measured through the MSQ scale (65.4 ± 10.11 vs. 51 ± 11.36; p < 0.001). Regarding satisfaction, we can observe that 97.5% of patients who attended group sessions would recommend them to other people with migraines and, furthermore, considered the content to be good or excellent.
Conclusions
TE in the treatment of chronic migraine offers a promising improvement in the quality of life of patients by empowering them with knowledge about their condition and pain management strategies. This complements pharmacological treatments by focusing on prevention and self-care. Although more research is needed to establish standard protocols, the presence of advanced practice nurses in headaches is crucial for the successful implementation of these programs.
{"title":"Impacto de la implantación de un programa de educación terapéutica para pacientes con migraña crónica","authors":"Teresa Marco Galindo, Santiago Fernandez Fernandez, Victor Obach Baurier, Neus Fabregat Fabra","doi":"10.1016/j.sedene.2024.05.001","DOIUrl":"10.1016/j.sedene.2024.05.001","url":null,"abstract":"<div><h3>Objective</h3><div>To analyze the impact of implementing a therapeutic education (TE) program for patients with chronic migraine.</div></div><div><h3>Method</h3><div>Prospective longitudinal intervention and assessment study before and after the program, lasting 6 months, conducted at the Headache and Facial Pain Unit of Hospital Clinic in Barcelona.</div></div><div><h3>Results</h3><div>TE resulted in a significant improvement in the frequency of headache days per month, DCM (15.6<!--> <!-->±<!--> <!-->6.84 vs. 11.5<!--> <!-->±<!--> <!-->4.68; p<!--> <!--><<!--> <!-->0.001), migraine days per month, DMM (7.38<!--> <!-->±<!--> <!-->1.44 vs. 5.88<!--> <!-->±<!--> <!-->1.36; p<!--> <!--><<!--> <!-->0.001), and increased perception of quality of life, measured through the MSQ scale (65.4<!--> <!-->±<!--> <!-->10.11 vs. 51<!--> <!-->±<!--> <!-->11.36; p<!--> <!--><<!--> <!-->0.001). Regarding satisfaction, we can observe that 97.5% of patients who attended group sessions would recommend them to other people with migraines and, furthermore, considered the content to be good or excellent.</div></div><div><h3>Conclusions</h3><div>TE in the treatment of chronic migraine offers a promising improvement in the quality of life of patients by empowering them with knowledge about their condition and pain management strategies. This complements pharmacological treatments by focusing on prevention and self-care. Although more research is needed to establish standard protocols, the presence of advanced practice nurses in headaches is crucial for the successful implementation of these programs.</div></div>","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"61 ","pages":"Article 100166"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143349057","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2025-01-01DOI: 10.1016/j.sedene.2025.500174
Almudena Santano Magariño
{"title":"Humanización y sanidad: algo más que una necesidad","authors":"Almudena Santano Magariño","doi":"10.1016/j.sedene.2025.500174","DOIUrl":"10.1016/j.sedene.2025.500174","url":null,"abstract":"","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"61 ","pages":"Article 500174"},"PeriodicalIF":0.0,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143324895","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-01DOI: 10.1016/j.sedene.2024.500171
José Manuel Párraga Sánchez
{"title":"Cuidado psicoemocional de las enfermeras neurológicas. Claves para el descifrar el enigma del bienestar emocional","authors":"José Manuel Párraga Sánchez","doi":"10.1016/j.sedene.2024.500171","DOIUrl":"10.1016/j.sedene.2024.500171","url":null,"abstract":"","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"60 ","pages":"Article 500171"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142554223","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-01DOI: 10.1016/j.sedene.2022.11.002
Federico Ruta , Paolo Ferrara , Francesca Dal Mas
Background
Spinal muscular atrophy (SMA) is one of the most common genetic causes of death in children affecting about one in 10,000 live births, while its prevalence is about 1–2 per 100,000 (live births). Recently, the European Commission (EU) approved a novel gene therapy based on the onasemnogen abeparvovec (Zolgensma) for the treatment of patients with SMA. In addition to drug treatment, it is essential that children with SMA apply self-care methods to maintain their health, monitor their weight and food intake, and use appropriate remedies. Self-care and co-production of health care services are crucial in the modern ecosystem, as they can improve survival and prevent hospitalizations. The aim of this work is to support healthcare professionals who may have to deal with patients affected by this disease.
Methods
The article uses two case studies of children with spinal muscular atrophy through the creation of a multi-professional research group composed of health professionals who provide direct care to SMA children. The collection and analysis of the data were carried out by involving different figures who interact with SMA children. Specifically, physicians, nurses, parents, physical therapists, social workers, and teachers were individually interviewed.
Results
The study aims to provide suggestions on assessing child self-care, believing it to be a valuable method to gather information on how the child performs daily activities and how much the surrounding environment affects self-care. This paper highlights how self-management behaviors depend on four basic aspects: the person (individual, cognitive, and social perceptions), the patient's family (level of knowledge of pathology, involvement in the management and quality of relationship with the patient), the community (relationships with external social contexts, such as school and other organizations), and the healthcare system (availability of resources and the degree of evolution of healthcare).
Conclusions
The experience conducted may be helpful to other health institutions to make the approach to children with SMA as most effective as possible, creating internal workgroups and collaboration with external experts on the subject. Moreover, it provides valuable information on caring for families with children with SMA.
背景脊髓性肌萎缩症(SMA)是导致儿童死亡的最常见遗传病因之一,约每 10,000 名活产婴儿中就有一名患儿,而其发病率约为每 100,000 名活产婴儿中 1-2 例。最近,欧盟委员会(EU)批准了一种基于onasemnogen abeparvovec(Zolgensma)的新型基因疗法,用于治疗SMA患者。除药物治疗外,SMA 患儿还必须采用自我保健方法来保持健康,监测体重和食物摄入量,并使用适当的补救措施。在现代生态系统中,自我保健和共同提供医疗保健服务至关重要,因为它们可以提高存活率并避免住院治疗。这项工作的目的是为那些可能需要处理脊髓性肌萎缩症患者的医护人员提供支持。方法本文通过建立一个由直接护理脊髓性肌萎缩症儿童的医护人员组成的多专业研究小组,对脊髓性肌萎缩症儿童进行了两个案例研究。数据的收集和分析是通过与 SMA 儿童打交道的不同人士进行的。结果本研究旨在为评估儿童自理能力提供建议,认为这是收集有关儿童如何进行日常活动以及周围环境对自理能力影响程度的信息的重要方法。本文强调了自我管理行为如何取决于四个基本方面:个人(个人、认知和社会观念)、患者家庭(对病理的了解程度、参与管理的程度以及与患者关系的质量)、社区(与外部社会环境的关系,如学校和其他组织)以及医疗保健系统(资源的可用性和医疗保健的发展程度)。结论 本次研究的经验可能有助于其他医疗机构建立内部工作组并与外部专家合作,尽可能有效地为 SMA 患儿提供医疗服务。此外,它还为照顾 SMA 患儿家庭提供了宝贵的信息。
{"title":"“No SMA can hold”: Nursing care for children with spinal muscular atrophy. Descriptive analysis of two case studies","authors":"Federico Ruta , Paolo Ferrara , Francesca Dal Mas","doi":"10.1016/j.sedene.2022.11.002","DOIUrl":"10.1016/j.sedene.2022.11.002","url":null,"abstract":"<div><h3>Background</h3><div>Spinal muscular atrophy (SMA) is one of the most common genetic causes of death in children affecting about one in 10,000 live births, while its prevalence is about 1–2 per 100,000 (live births). Recently, the European Commission (EU) approved a novel gene therapy based on the onasemnogen abeparvovec (Zolgensma) for the treatment of patients with SMA. In addition to drug treatment, it is essential that children with SMA apply self-care methods to maintain their health, monitor their weight and food intake, and use appropriate remedies. Self-care and co-production of health care services are crucial in the modern ecosystem, as they can improve survival and prevent hospitalizations. The aim of this work is to support healthcare professionals who may have to deal with patients affected by this disease.</div></div><div><h3>Methods</h3><div>The article uses two case studies of children with spinal muscular atrophy through the creation of a multi-professional research group composed of health professionals who provide direct care to SMA children. The collection and analysis of the data were carried out by involving different figures who interact with SMA children. Specifically, physicians, nurses, parents, physical therapists, social workers, and teachers were individually interviewed.</div></div><div><h3>Results</h3><div>The study aims to provide suggestions on assessing child self-care, believing it to be a valuable method to gather information on how the child performs daily activities and how much the surrounding environment affects self-care. This paper highlights how self-management behaviors depend on four basic aspects: the person (individual, cognitive, and social perceptions), the patient's family (level of knowledge of pathology, involvement in the management and quality of relationship with the patient), the community (relationships with external social contexts, such as school and other organizations), and the healthcare system (availability of resources and the degree of evolution of healthcare).</div></div><div><h3>Conclusions</h3><div>The experience conducted may be helpful to other health institutions to make the approach to children with SMA as most effective as possible, creating internal workgroups and collaboration with external experts on the subject. Moreover, it provides valuable information on caring for families with children with SMA.</div></div>","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"60 ","pages":"Article 100144"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142554225","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-07-01DOI: 10.1016/j.sedene.2023.10.001
Introduction
Social support promotes feelings of stability, predictability and self-esteem and reduces the social isolation, because information, tangible assistance and emotional support can be obtained from the social network.
Methods
We conducted a narrative review of the international empirical literature to provide a comprehensive understanding of the impact of social support and social networks on patients diagnosed with myasthenia gravis. The following databases were consulted: CINAHL, MEDLINE, APA PsycInfo, SCOPUS and Web of Science. Information was collected up to 2nd December 2022.
Results
The initial search generated 46 articles, but after the exclusion criteria had been applied, the total number of articles analysed was 13.
Conclusions
The symptoms of myasthenia gravis, especially ptosis and slurred speech, can have a major psychosocial impact and a negative effect on interaction social.
方法我们对国际实证文献进行了叙述性回顾,以全面了解社会支持和社会网络对重症肌无力患者的影响。我们查阅了以下数据库CINAHL、MEDLINE、APA PsycInfo、SCOPUS 和 Web of Science。结论重症肌无力的症状,尤其是上睑下垂和言语不清,会对社会心理产生重大影响,并对社会交往产生负面影响。
{"title":"Functional social support in patients with myasthenia gravis: Narrative review","authors":"","doi":"10.1016/j.sedene.2023.10.001","DOIUrl":"10.1016/j.sedene.2023.10.001","url":null,"abstract":"<div><h3>Introduction</h3><div>Social support promotes feelings of stability, predictability and self-esteem and reduces the social isolation, because information, tangible assistance and emotional support can be obtained from the social network.</div></div><div><h3>Methods</h3><div>We conducted a narrative review of the international empirical literature to provide a comprehensive understanding of the impact of social support and social networks on patients diagnosed with myasthenia gravis. The following databases were consulted: CINAHL, MEDLINE, APA PsycInfo, SCOPUS and Web of Science. Information was collected up to 2nd December 2022.</div></div><div><h3>Results</h3><div>The initial search generated 46 articles, but after the exclusion criteria had been applied, the total number of articles analysed was 13.</div></div><div><h3>Conclusions</h3><div>The symptoms of myasthenia gravis, especially ptosis and slurred speech, can have a major psychosocial impact and a negative effect on interaction social.</div></div>","PeriodicalId":38763,"journal":{"name":"Revista Cientifica de la Sociedad Espanola de Enfermeria Neurologica","volume":"60 ","pages":"Article 100155"},"PeriodicalIF":0.0,"publicationDate":"2024-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139195108","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}