Cuidados paliativos en la enfermedad de Huntington: perspectivas desde la atención de enfermería
datacite.rights | http://purl.org/coar/access_right/c_16ec | spa |
dc.contributor.author | Navarro, Ana | |
dc.contributor.author | González, Mileidys | |
dc.contributor.author | Jiménez, Jennifer | |
dc.contributor.author | Martínez, Gabriela | |
dc.contributor.author | Mejía, Cesar | |
dc.contributor.author | Mendoza, Yulianis | |
dc.contributor.author | Polo, Francesca | |
dc.contributor.author | Torre, Geraldine | |
dc.contributor.author | Turizo, Natali | |
dc.contributor.author | Mostapha, Ahmad | |
dc.date.accessioned | 2022-02-24T21:24:38Z | |
dc.date.available | 2022-02-24T21:24:38Z | |
dc.date.issued | 2021 | |
dc.description.abstract | Introducción: La enfermedad de Huntington (EH) es un trastorno neurodegenerativo autosómica dominante, caracterizada por alteraciones motoras, cognitiva y neuro-psiquiátrica, por consiguiente se busca describir los cuidados paliativos de la enfermedad de Huntington desde la perspectiva de enfermería, con el propósito de aportar conocimiento sobre el tratamiento y contribuir a la orientación que puedan ayudar a mejorar la calidad de vida de los pacientes y de sus cuidadores. Conclusiones y recomendaciones: la EH se puede abordar desde diferentes dominios como: dominio funcional, emocional, motor, nutricional y de comportamiento, teniendo en cuenta las necesidades que se presenta en cada dominio se establece las actividades terapéuticas, desde los cuidados paliativos con perspectiva de enfermería, orientado sobre la atención integral activa y continua del paciente-familia donde su finalidad no será como tal la cura de la enfermedad, sino que buscan brindar una mejor calidad de vida para los pacientes y sus familiares. | spa |
dc.description.abstract | Introduction: Huntington's disease (HD) is an autosomal dominant neurodegenerative disorder, characterized by motor, cognitive and neuro-psychiatric alterations, at last it seeks to describe the palliative care of Huntington's disease from the nursing perspective, with the purpose of provide knowledge about treatment and contribute to guidance that can help improve the quality of life of patients and their caregivers. Conclusions and recommendations: HE can be approached from different domains such as: functional, emotional, motor, nutritional and behavioral domain, taking into account the needs that are presented in each domain, therapeutic activities are established, from palliative care with a perspective of nursing, oriented on the active and continuous comprehensive care of the patient-family where its purpose will not be as the cure of the disease, but rather they seek to provide a better quality of life for patients and their families. | eng |
dc.format.mimetype | spa | |
dc.identifier.uri | https://hdl.handle.net/20.500.12442/9395 | |
dc.language.iso | spa | spa |
dc.publisher | Ediciones Universidad Simón Bolívar | spa |
dc.publisher | Facultad de Ciencias de la Salud | spa |
dc.rights | Attribution-NonCommercial-NoDerivatives 4.0 Internacional | eng |
dc.rights.accessrights | info:eu-repo/semantics/restrictedAccess | spa |
dc.rights.uri | http://creativecommons.org/licenses/by-nc-nd/4.0/ | |
dc.subject | Cuidado paliativo | spa |
dc.subject | Cuidado de enfermería | spa |
dc.subject | Enfermedad Huntington | spa |
dc.subject | Dominios alterados | spa |
dc.subject | Palliative care | eng |
dc.subject | Nursing care | eng |
dc.subject | Huntington's disease | eng |
dc.subject | Altered domains | eng |
dc.title | Cuidados paliativos en la enfermedad de Huntington: perspectivas desde la atención de enfermería | spa |
dc.type.driver | info:eu-repo/semantics/bachelorThesis | spa |
dc.type.spa | Trabajo de grado - pregrado | spa |
dcterms.references | L. Bayliss, V. Galvez, A. Ochoa-morales, M. Chávez-oliveros, G. Delgado-garcía, and M. C. Boll, “Theory of mind impairment in Huntington’s disease patients and their relatives,” no. May, pp. 574–578, 2019. | eng |
dcterms.references | E. Pyo, M. E. Macdonald, V. C. Wheeler, and L. Jones, “Huntington’s Disease Pathogenesis : Two Sequential Components,” vol. 10, pp. 35–51, 2021, doi: 10.3233/JHD-200427. | eng |
dcterms.references | J. Michel, R. Pupo, Y. Viviana, D. Rojas, and Y. Rojas, “Actualización en enfermedad de Huntington Update on Huntington Disease,” pp. 546–557. | spa |
dcterms.references | C. Ohlmeier, K. Saum, W. Galetzka, D. Beier, and H. Gothe, “Epidemiology and health care utilization of patients suffering from Huntington ’ s disease in Germany : real world evidence based on German claims data,” pp. 1–8, 2019. | eng |
dcterms.references | ALFONSO and HS, “Caracterizacion de las secuencias polimorficas de tripletes CAG y CCG del gen de la enfermedad de Huntington en familias colombianas,” Acta Med Colomb, vol. 12, pp. 70–75, 1996, Accessed: Sep. 05, 2021. [Online]. Available: http://ci.nii.ac.jp/naid/10021247795/en/. | spa |
dcterms.references | C. D. E. Revisi and R. Article, “Cuidados paliativos en la enfermedad de Huntington : perspectivas desde la atención primaria de salud .,” vol. 79, no. 4, 2016. | spa |
dcterms.references | N. F. Borda, S. Nurczyk, and V. Diaz-videla, “NURSING MODELS PALLIATIVE CARE AND THEORIES : SUPPORT FOR MODELOS Y TEORÍAS DE ENFERMERÍA : SUSTENTO PARA LOS CUIDADOS PALIATIVOS MODELOS E TEORIAS DE ENFERMAGEM : SUPORTE PARA CUIDADOS PALIATIVOS,” vol. 8, pp. 44–56, 2019. | spa |
dcterms.references | C. Rubén et al., “Síndrome de Huntington : revisión bibliográfica y actualización Huntington syndrome : bibliographic review and update Síndrome de Huntington : revisão e atualização bibliográfica,” no. 4, 2020, doi: 10.26820/recimundo/4.(4).octubre.2020.392-398. | spa |
dcterms.references | R. Ghosh and S. J. Tabrizi, “Clinical Features of Huntington ’ s Disease,” 2018. | eng |
dcterms.references | P. L. Faber et al., “Clinical Neurophysiology Fundamentally altered global- and microstate EEG characteristics in Huntington ’ s disease,” Clin. Neurophysiol., vol. 132, no. 1, pp. 13–22, 2021, doi: 10.1016/j.clinph.2020.10.006. | eng |
dcterms.references | T. Hünefeldt, S. Maffi, S. Migliore, F. Squitieri, and M. O. Belardinelli, “Emotion recognition and inhibitory control in manifest and pre-manifest Huntington ’ s disease : evidence from a new Stroop task,” 2019, doi: 10.4103/1673-5374.274342. | eng |
dcterms.references | K. Duff, J. S. Paulsen, L. J. Beglinger, D. R. Langbehn, and J. C. Stout, “Psychiatric Symptoms in Huntington’s Disease before Diagnosis: The Predict-HD Study,” Biol. Psychiatry, vol. 62, no. 12, pp. 1341–1346, 2007, doi: 10.1016/j.biopsych.2006.11.034. | eng |
dcterms.references | M. Imbert, F. Blandel, C. Leumann, L. Garcia, and A. Goyenvalle, “Lowering Mutant Huntingtin Using Tricyclo-DNA Antisense Oligonucleotides As a Therapeutic Approach for Huntington’s Disease,” Nucleic Acid Ther., vol. 29, no. 5, pp. 256–265, 2019, doi: 10.1089/nat.2018.0775. | eng |
dcterms.references | L. L. Sokol et al., “Meaning and purpose in Huntington’s disease: a longitudinal study of its impact on quality of life,” Ann. Clin. Transl. Neurol., vol. 8, no. 8, pp. 1668–1679, 2021, doi: 10.1002/acn3.51424. | eng |
dcterms.references | N. E. Carlozzi et al., “Patient-Reported Outcomes in Huntington ’ s Disease : Quality of Life in Neurological Disorders ( Neuro-QoL ) and Huntington ’ s Disease Health-Related Quality of Life ( HDQLIFE ) Physical Function Measures,” vol. 00, no. 00, pp. 1–6, 2017, doi: 10.1002/mds.27046. | eng |
dcterms.references | C. Fusilli et al., “Biological and clinical manifestations of juvenile Huntington’s disease: a retrospective analysis,” Lancet Neurol., vol. 17, no. 11, pp. 986–993, 2018, doi: 10.1016/S1474-4422(18)30294-1. | eng |
dcterms.references | F. Paz-Rodríguez et al., “Neuropsychological performance and disease burden in individuals at risk of developing Huntington disease,” Neurologia, no. xxxx, 2021, doi: 10.1016/j.nrl.2021.04.015. | eng |
dcterms.references | U. Desarrollo, C. De Vida, R. C. De Neuropsicología, and U. Desarrollo, “Alteraciones Neurofisiológicas producidas por la Enfermedad de Huntington sobre la Calidad de Vida,” 2016, doi: 10.5839/rcnp.2016.11.02.08. | spa |
dcterms.references | G. Neri-Nani et al., “Consenso Mexicano sobre el diagnóstico de la enfermedad de Huntington,” Arch. Neurociencias, vol. 21, no. 1, pp. 64–72, 2016, doi: 10.31157/archneurosciencesmex.v21i1.112. | spa |
dcterms.references | “CUIDADOS DE ENFERMERÍA EN LA ENFERMEDAD DE HUNTINGTON,” 2017. | spa |
dcterms.references | M. Nance et al., “Guía para Medico sobre el Manejo de la enfermedad de Huntington Tercera edición.” | spa |
dcterms.references | M.-C. Boll, E. Melissa Báez Martínez, A. Ochoa, M. E. Alonso, M. Velasco, and S. México, “Análisis del deterioro cognoscitivo en pacientes con enfermedad de Huntington mediante las pruebas de la escala unificada (UHDRS),” 2008. | spa |
dcterms.references | Huntington Study Group, “Unified Huntington’s Disease Rating Scale: Reliabilityand-Consistency,” 1996. doi: doi: 10.1002/mds.870110204. | eng |
dcterms.references | C. Cepeda and X. P. Tong, “Huntington’s disease: From basic science to therapeutics,” CNS Neurosci. Ther., vol. 24, no. 4, pp. 247–249, 2018, doi: 10.1111/cns.12841. | eng |
dcterms.references | A. Kumar, V. Kumar, K. Singh, S. Kumar, and Y. Kim, “brain sciences Therapeutic Advances for Huntington ’ s Disease,” Brain Sci., pp. 1–20, 2020. | eng |
dcterms.references | and A.-M. Y. Young Hee Choi, “乳鼠心肌提取 HHS Public Access,” Physiol. Behav., vol. 176, no. 3, pp. 139–148, 2019, doi: 10.1007/s00415-017-8677-7.A. [ | eng |
dcterms.references | M. Ciosi et al., “Library preparation and MiSeq sequencing for the genotyping-by-sequencing of the Huntington disease HTT exon one trinucleotide repeat and the quantification of somatic mosaicism,” 2020, doi: 10.21203/rs.2.1581/v2. | eng |
dcterms.references | M. Alejandra Rosales-Reynoso Patricio Barros-Núñez and F. Salamanca-Gómez, “Diagnóstico molecular de la enfermedad de Huntington BIOLOGÍA MOLECULAR Y MEDICINA,” 2008. [Online]. Available: www.anmm.org.mx. | spa |
dcterms.references | A. Kim et al., “New avenues for the treatment of huntington’s disease,” International Journal of Molecular Sciences, vol. 22, no. 16. MDPI AG, Aug. 02, 2021, doi: 10.3390/ijms22168363. | eng |
dcterms.references | B. Zeitler et al., “Allele-selective transcriptional repression of mutant HTT for the treatment of Huntington’s disease,” Nat. Med., vol. 25, no. 7, pp. 1131–1142, 2019, doi: 10.1038/s41591-019-0478-3. | eng |
dcterms.references | T. A. Mestre et al., “Rating Scales for Behavioral Symptoms in Huntington ’ s Disease : Critique and Recommendations Organization and Critique Process Identified Scales and Their Utilization in,” vol. 00, no. 00, pp. 1–13, 2016, doi: 10.1002/mds.26675. | eng |
dcterms.references | J. W. Shin et al., “Permanent inactivation of Huntington’s disease mutation by personalized allele-specific CRISPR/Cas9,” Hum. Mol. Genet., vol. 25, no. 20, pp. 4566–4576, 2016, doi: 10.1093/hmg/ddw286. | eng |
dcterms.references | L. Gitleman, “済無No Title No Title No Title,” Pap. Knowl. . Towar. a Media Hist. Doc., 2014. | eng |
dcterms.references | M. Jimenez-Sanchez, F. Licitra, B. R. Underwood, and D. C. Rubinsztein, “Huntington’s disease: Mechanisms of pathogenesis and therapeutic strategies,” Cold Spring Harb. Perspect. Med., vol. 7, no. 7, pp. 1–22, 2017, doi: 10.1101/cshperspect.a024240. | eng |
dcterms.references | G. E. B. Wright et al., “Interrupting sequence variants and age of onset in Huntington’s disease: clinical implications and emerging therapies,” Lancet Neurol., vol. 19, no. 11, pp. 930–939, 2020, doi: 10.1016/S1474-4422(20)30343-4. | eng |
dcterms.references | J. Robinson, M. Gott, C. Gardiner, and C. Ingleton, “Specialist palliative care nursing and the philosophy of palliative care: A critical discussion,” Int. J. Palliat. Nurs., vol. 23, no. 7, pp. 352–358, 2017, doi: 10.12968/ijpn.2017.23.7.352. | eng |
dcterms.references | M. R. Ekkel, M. F. I. A. Depla, E. M. L. Verschuur, R. B. Veenhuizen, C. M. P. M. Hertogh, and B. D. Onwuteaka-philipsen, “Gaining insight into the views of outpatients with Huntington ’ s disease regarding their future and the way they deal with their poor prognosis : a qualitative study,” pp. 1–8, 2021. | eng |
dcterms.references | “https://repository.udca.edu.co/handle/11158/933,” p. 190390, 2021, doi: 10.3233/JHD-190390. | spa |
dcterms.references | C. G. Tarolli, A. M. Chesire, K. M. Biglan, E. Phase, C. Development, and E. Lilly, “Reviews Palliative Care in Huntington Disease : Personal Reflections and a Review of the Literature,” pp. 1–8, 2017, doi: 10.7916/D88057C7. | eng |
dcterms.references | S. Patricia, M. Castrillón, and A. Analidis, “Artículo Original Índice modificado de esfuerzo en cuidadores informales de personas con Enfermedad de Huntington en los Municipios de Algarrobo , Ariguaní y San Angel . Magdalena , Colombia,” vol. 23, no. 1, pp. 3–7, 2017. | spa |
dcterms.references | J. Suárez Rojas and M. Vásquez Cerdas, “Beneficios de la terapia física en la enfermedad de Huntington,” Rev. Neuroeje, vol. 28(1), pp. 24-36, vol. 28, no. 1, 2015. | spa |
dcterms.references | D. Dash and T. A. Mestre, “Therapeutic Update on Huntington’s Disease: Symptomatic Treatments and Emerging Disease-Modifying Therapies,” Neurotherapeutics, vol. 17, no. 4, pp. 1645–1659, 2020, doi: 10.1007/s13311-020-00891-w. | eng |
dcterms.references | C. B. Moskowitz and A. K. Rao, “Making a measurable difference in advanced Huntington disease care,” in Handbook of Clinical Neurology, vol. 144, 2017. | eng |
dcterms.references | K. E. Anderson et al., “Un co cte d Au tho r P Clinical Management of Neuropsychiatric roo f cte d Au tho r P roo f Un co,” pp. 1–10, doi: 10.3233/JHD-180293. | eng |
dcterms.references | N. E. Karagas, N. Pessoa, and E. Furr, “Irritability in Huntington ’ s Disease,” vol. 9, pp. 107–113, 2020, doi: 10.3233/JHD-200397. | eng |
dcterms.references | J. Charles et al., “Presentation and care of a family with Huntington disease in a resource-limited community,” J. Clin. Mov. Disord., vol. 4, no. 1, 2017, doi: 10.1186/s40734-017-0050-6. | eng |
dcterms.references | V. E. Bianchi, P. F. Herrera, and R. Laura, “Effect of nutrition on neurodegenerative diseases. A systematic review,” Nutr. Neurosci., vol. 24, no. 10, pp. 810–834, 2021, doi: 10.1080/1028415X.2019.1681088. | eng |
dcterms.references | R. Cubana de Alimentación Nutrición, T. Rodríguez Graña, L. Velázquez Pérez, and S. Santana Porbén, “Revisión temática,” RCAN Rev Cuba. Aliment Nutr, vol. 1, no. 1, p. 2221, 2019. | spa |
dcterms.references | O. R. Breve et al., “Una mirada con lupa a las vulnerabilidades de las personas con enfermedad de Huntington,” no. 28, pp. 1–3, 2018, doi: 10.1001/jama.2013.281053.8. | spa |
dcterms.references | N. E. Fritz et al., “Relationships among apathy, health-related quality of life, and function in huntington’s disease,” J. Neuropsychiatry Clin. Neurosci., vol. 30, no. 3, pp. 194–201, 2018, doi: 10.1176/appi.neuropsych.17080173. | eng |
dcterms.references | A. L. Teixeira, L. C. De Souza, N. P. Rocha, E. Furr-Stimming, and E. C. Lauterbach, “Revisitando a neuropsiquiatria da doença de huntington,” Dement. e Neuropsychol., vol. 10, no. 4, pp. 261–266, 2016, doi: 10.1590/s1980-5764-2016dn1004002. | eng |
dcterms.references | M. Ciosi et al., “Approaches to Sequence the HTT CAG Repeat Expansion and Quantify Repeat Length Variation,” J. Huntingtons. Dis., vol. 10, no. 1, pp. 53–74, 2021, doi: 10.3233/JHD-200433. | eng |
dcterms.references | M. van Bruggen-Rufi, A. Vink, W. Achterberg, and R. Roos, “Music therapy in Huntington’s disease: A protocol for a multi-center randomized controlled trial,” BMC Psychol., vol. 4, no. 1, pp. 1–9, 2016, doi: 10.1186/s40359-016-0146-z. | eng |
dcterms.references | N. E. Carlozzi et al., “A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning,” J. Neurol., vol. 265, no. 1, 2018, doi: 10.1007/s00415-017-8677-7. | eng |
dcterms.references | L. Quinn, D. Kegelmeyer, A. Kloos, A. K. Rao, M. Busse, and N. E. Fritz, “Clinical recommendations to guide physical therapy practice for Huntington disease,” Neurology, vol. 94, no. 5, pp. 217–228, 2020, doi: 10.1212/WNL.0000000000008887. | eng |
dcterms.references | M. Milena, P. Melgarejo, A. Mar, T. Herrera, J. Melisa, and O. Ospino, “Calidad de Vida en pacientes diagnosticados con enfermedad de Huntington y sus cuidadores en el del Departamento del Magdalena Quality of life in patients with Huntington’s disease and family caregivers of Magdalena Department,” 2017. | spa |
dcterms.references | C. Vidal Marín, “Tratamiento Neuropsicológico en la Enfermedad de Huntington: Una revisión sistemática,” Rev. Discapacidad, Clínica y Neurociencias, vol. 4, no. 1, p. 57, 2017, doi: 10.14198/dcn.2017.4.1.05. | spa |
dcterms.references | N. S. Caron, G. E. B. Wright, M. R. Hayden, and C. Frcp, “Huntington Disease Summary Suggestive Findings,” pp. 1–34, 2019. | eng |
dcterms.references | M. E. Gómez-Gómez and S. C. Zapico, “Frailty, cognitive decline, neurodegenerative diseases and nutrition interventions,” Int. J. Mol. Sci., vol. 20, no. 11, 2019, doi: 10.3390/ijms20112842. | eng |
dcterms.references | A. Peinemann, S. Schuller, C. Pohl, T. Jahn, A. Weindl, and J. Kassubek, “Executive dysfunction in early stages of Huntington’s disease is associated with striatal and insular atrophy: A neuropsychological and voxel-based morphometric study,” J. Neurol. Sci., vol. 239, no. 1, pp. 11–19, 2005, doi: 10.1016/j.jns.2005.07.007. | eng |
oaire.version | info:eu-repo/semantics/acceptedVersion | spa |
sb.programa | Enfermería | spa |
sb.sede | Sede Barranquilla | spa |