Transforming Self-Care: Infotechnological solutions for patients with systemic lupus erythematosus
| datacite.rights | http://purl.org/coar/access_right/c_abf2 | |
| dc.contributor.author | Martínez-Royert, Judith Cristina | |
| dc.contributor.author | Castillo Dominguez, Nadine Isabel | |
| dc.contributor.author | Ucros Fuenmayor, Karina Margarita | |
| dc.contributor.author | Aroca-Martinez, Gustavo | |
| dc.contributor.author | Cadena Bofanti, Andrés | |
| dc.contributor.author | Sarmiento Gutierrez, Johani Judith | |
| dc.contributor.author | Vasquez Obeso, Esteban De Jesus | |
| dc.contributor.author | Sierra Cohen, Sheyla Patricia | |
| dc.date.accessioned | 2025-09-30T19:32:31Z | |
| dc.date.available | 2025-09-30T19:32:31Z | |
| dc.date.issued | 2025 | |
| dc.description.abstract | Systemic Lupus Erythematosus (SLE) is a chronic inflammatory and autoimmune disease of a multisystemic nature that requires lifestyle adaptation by those affected. Therefore, the importance of providing information and education to individuals with the disease is emphasized, focusing on self-care to mitigate stress, anxiety linked to uncertainty, and promote engagement in self-care practices. This need highlights the relevance of having technological methods and tools to facilitate effective disease management and improve the quality of life. Objective: To design an infotecnological tool aimed at strengthening the self-care capacities of patients with Systemic Lupus Erythematosus attending the Clínica de la Costa. Material and Methods: A descriptive quantitative approach was used, involving 444 lupus patients from the Clínica de la Costa in Barranquilla, Colombia. The short-term research was conducted in two phases: 1) characterization of the population in aspects such as age, gender, severity level, comorbidities, and disease knowledge; 2) design and pilot testing of the infotecnological tool.Results: The average age of the patients was approximately 41 years, with 87.2% (387) being women. The most prevalent comorbidities included hypertension (18.7%), diabetes mellitus (1.6%), dyslipidemia (1.4%), Cushing's syndrome (2%), osteoporosis (2%), and metabolic syndrome (0.2%). 27% (120 patients) presented active disease, with 18.7% (83) at a severe level, 5.6% (25) at a moderate level, and only 2.3% (10 patients) presenting a mild severity level with high knowledge. Conclusions: The majority of patients were female and over the age of 39; most of them had inactive lupus with a high level of knowledge. The technological tool was validated by the users, who gave it ratings between 4 and 5 and qualitative evaluations ranging from good to excellent. | eng |
| dc.format.mimetype | ||
| dc.identifier.citation | Transforming Self-Care: Infotechnological Solutions For Patients With Systemic Lupus Erythematosus. (2025). The Review of Diabetic Studies , 64-74. https://doi.org/10.1900/ne5nnm02 | eng |
| dc.identifier.doi | https://doi.org/10.1900/ne5nnm02 | |
| dc.identifier.issn | 16140575 (Online) | |
| dc.identifier.issn | 16136071 (Print) | |
| dc.identifier.uri | https://hdl.handle.net/20.500.12442/16986 | |
| dc.identifier.url | https://diabeticstudies.org/index.php/RDS/article/view/496 | |
| dc.language.iso | eng | |
| dc.publisher | Demosthenes Panagiotakos | spa |
| dc.rights | Attribution-NonCommercial-NoDerivatives 4.0 International | eng |
| dc.rights.accessrights | info:eu-repo/semantics/openAccess | |
| dc.rights.uri | http://creativecommons.org/licenses/by-nc-nd/4.0/ | |
| dc.source | The Review of Diabetic Studies | eng |
| dc.source | Rev Diabet Stud | eng |
| dc.source | Vol. 21 Núm. S7 (2025) | spa |
| dc.subject.keywords | Systemic lupus erythematosus | eng |
| dc.subject.keywords | Self-care education | eng |
| dc.subject.keywords | Nursing | eng |
| dc.subject.keywords | Autoimmune diseases | eng |
| dc.title | Transforming Self-Care: Infotechnological solutions for patients with systemic lupus erythematosus | eng |
| dc.type.driver | info:eu-repo/semantics/article | |
| dc.type.spa | Artículo científico | |
| dcterms.references | Ángel Ángel ZE, Duque Castaño GA, Tovar Cortes DL. Cuidados de enfermería en el paciente con enfermedad renal crónica en hemodiálisis: una revisión sistemática. Enferm Nefrol [Internet]. 2016 Sep. [consultado 22 de Mayo 2019 ] ; 19( 3 ): 202-213. Disponible en: http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S225428842016000300003&lng=es | spa |
| dcterms.references | Aroca Cadena G, Iglesias A, Egea E, Domínguez A, Fontalvo J, Depine S. Prognosis, Survival and Renal Función in Patients with Lupus Nephitis. In 11 th International Congress on SLE.Clinical and Experimenatal Rheumatology 2015:47. | eng |
| dcterms.references | Egea Bermejo G, Malagon Gutierrez C, Fang LC, Olmos C, Gonzalez L. E, Guarnizo Zuccardi P, Garavito de Egea G. Maternal Genetics Variants in PTPN22, TNF and VDR Genes Increase the Risk of Pediatric Lupus Nephritis. A Pilot Study. In Frontiers in Immunology. Retrieved from 2016. http://www.frontiersin.org/Journal/FullText.aspx?f=35&name=immunology&ART_DOI=10.33 8 | eng |
| dcterms.references | Gómez RA. Renal disease in Colombia. Renal Failure. 2006; 28: 643–647. http://doi.org/10.1080/08860220600925719?journalCode=rnf | eng |
| dcterms.references | Pacheco L, Navarro Quiroz EA, Díaz Y, Almendral L, González Torres H. J, Egea Bermejo E, Aroca Martínez GJ. Profile of cytokines and chemokines in peripheral circulating blood in Colombian patients with lupus nephritis. In Department of Medicine (Ed.), Lupus 2015. Vienna, Austria: Medical University Vienna. | eng |
| dcterms.references | Quintana G, Coral-Alvarado P, Aroca G, Patarroyo PM, Chalem P, Iglesias-Gamarra A, Cervera R. Single anti-P ribosomal antibodies are not associated with lupus nephritis in patients suffering from active systemic lupus erythematosus. Autoimmunity Reviews. 2010;9(11): 750–755. http://doi.org/10.1016/j.autrev.2010.06.004 | eng |
| dcterms.references | Velásquez Franco CJ, Yepes Núñez J, Ariza Mendoza KL, Isaza Arenas PA, Gaviria Gómez A M, Muñoz-Grajales C, et al. Estimación de la calidad de vida relacionada con la salud y medidas de utilidad en una población de pacientes colombianos con lupus eritematoso sistémico. Rev. Colomb. Reumatol. [Internet]. 2013 [cited 2018 May 16] ; 20( 4 ): 183-194. Available from: http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S0121- 81232013000400002&lng=en . | spa |
| dcterms.references | Anaya JM, Cañas C, Mantilla RD, Pineda-Tamayo R, Tobón GJ, Herrera-Diaz C, Uribe M. Lupus nephritis in Colombians: contrasts and comparisons with other populations. Clinical Reviews in Allergy & Immunology. 2011; 40(3): 199–207. http://doi.org/10.1007/s12016-010-8249-4 | eng |
| dcterms.references | Beltrán G, Mejía N, Martínez M, Martínez P. Nefropatía Lúpica en Niños: Correlación Clínico Patología en una Institución pediátrica de Bogotá - Colombia. Revista de La Facultad de Medicina de La Universidad Nacional de Colombia. 2004; 52(2):121–131 | spa |
| dcterms.references | Ahmadpoor P, Dalili N, Rostami M. An Update on Pathogenesis of Systemic Lupus Erythematosus. International Journal of Kidney Diseases. 2014; 8(3): 171–184. http://doi.org/24878938 | eng |
| dcterms.references | Naranjo G, Duque MV, Uribe OU, Gómez AR. Nefropatía Lúpica. Presentación clínica, clasificación y tratamiento. Revista Colombiana de Reumatología. 2006; 13(4): 307–333. | spa |
| dcterms.references | Martínez Avila M C, Almanza Hurtado A J, Rodriuez Blanco JD, Rodríguez Yañez T, Daza Arnedo, R y Aroca Martínez G. Nefropatía lúpica: una puesta al día. Revista colombiana de Reumatología Elsevier . 2021. DOI 10.1016/j.rcreu.2021.06.008 | spa |
| dcterms.references | Vera –Brand, Julieta; Aroca- Martínez, Gustavo; Fonseca- Angulo, Rosa; Rodríguez- Vera, Diana Nivel de conocimiento de los pacientes con Enfermedad Renal Crónica a cerca de su enfermedad en Barranquilla Colombia Revista Latinoamericana de Hipertensión, 2019, 14 (2) https://www.redalyc.org/articulo.oa?id=170263775002 | spa |
| dcterms.references | Barros-Higgins Lilian, Herazo-Beltrán Yaneth, Aroca-Martínez Gustavo. Calidad de vida relacionada con la salud en pacientes con enfermedad renal crónica. rev.fac.med. [Internet]. 2015 Oct [cited 2023 Jan 26] ; 63( 4 ): 641-647. Available from: http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S0120- 00112015000400009&lng=en. https://doi.org/10.15446/revfacmed.v63.n4.49805. | spa |
| dcterms.references | República de Colombia, Ministerio de Salud, Resolución 008430 de 1993. Por la cual se establecen las normas científicas, técnicas y administrativas para la investigación en salud, Bogotá, 1993 https://www.minsalud.gov.co/sites/rid/Lists/BibliotecaDigital/RIDE/DE/DIJ/RESOLUCION- 8430-DE-1993.PDF | spa |
| dcterms.references | Beltrán Adriana, Mora Claudia, Bastidas Alirio Rodrigo, Aragón Guzmán Diana Marcela. Caracterización de pacientes con lupus y fiebre: actividad, infección o ambas. Rev. Colombia. Reumatol. [Internet]. Junio de 2020 [consultado el 30 de septiembre de 2023]; 27(2): 95-102. Disponible en: http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S0121- 81232020000200095&lng=en . Publicación electrónica el 21 de abril de 2021. https://doi.org/10.1016/j.rcreu.2020.01.004 | spa |
| dcterms.references | Coronado-Alvarado, CD., Gámez-Saiz, IL., & Sotelo-Cruz, N. (2018). Características clínicas y comorbilidades de pacientes con lupus eritematoso sistémico en niños y adultos. Acta pediátrica de México, 39(1), 1-12. https://doi.org/10.18233/apm1no1pp1-121535 | spa |
| dcterms.references | Velásquez Franco Carlos Jaime, Zuluaga Henao María Paulina, Pineda Felipe Lozano, Pulgarín- Montoya Santiago, Onésimo-Vallejo Esteban, Rodríguez-Padilla Libia María et al . Baja masa ósea y osteoporosis en pacientes con lupus eritematoso sistémico. Rev.Colomb.Reumatol. [Internet]. Marzo de 2017 [consultado el 1 de octubre de 2023]; 24(1): 4-10. Disponible en: http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S0121- 81232017000100004&lng=en . https://doi.org/10.1016/j.rcreu.2016.11.003 | spa |
| dcterms.references | Batún-Garrido, José Antonio de Jesús, Hugo Alberto Radillo Alba, and Éufrates Hernández Núñez. "Riesgo cardiovascular en lupus eritematoso sistémico." Revista Colombiana de Reumatología 23.4 (2016): 242-249. DOI: 10.1016/j.rcreu.2016.05.001 | spa |
| dcterms.references | Castillo Fiallos Erika Patricia, Castillo Vera Luisa Janeth, Chirao Cudco Karina Evelyn, Parra Cazar Tony Hernán. Relación entre enfermedades reumáticas y diabetes mellitus. Rev Cuba Reumatol [Internet]. 2019 Dic [citado 2023 Sep 30] ; 21( 3 ): e97. Disponible en: http://scielo.sld.cu/scielo.php?script=sci_arttext&pid=S1817-59962019000300002&lng=es . Epub 01-Dic-2019. | spa |
| dcterms.references | Montiel de Jarolín Dora Elizabeth. Factores de riesgo cardiovascular y síndrome metabólico en pacientes con lupus eritematoso sistémico. Rev. Nac. (Itauguá) [Internet]. Junio de 2018 [consultado el 30 de septiembre de 2023]; 10(1): 4-16. Disponible en: http://scielo.iics.una.py/scielo.php?script=sci_arttext&pid=S2072- 81742018000100004&lng=en . https://doi.org/10.18004/rdn2018.0010.01.004-016 | spa |
| dcterms.references | Batún-Garrido, José Antonio de Jesús Batún, et al. "Dislipidemia y riesgo aterogénico en pacientes con lupus eritematoso sistémico." Medicina Clínica 147.2 (2016): 63-66. https://doi.org/10.1016/j.medcli.2016.03.030 | spa |
| dcterms.references | Miyagawa, Ippei et al. “A case of systemic lupus erythematosus in which Cushing's syndrome caused by adrenal adenoma accidentally occurred during long-term maintenance therapy with corticosteroids.” Modern rheumatology case reports vol. 4,1 (2020): 34-38. https://doi:10.1080/24725625.2019.1651488 | eng |
| dcterms.references | O'Connor KM. Evaluación y tratamiento de la osteoporosis. Med Clin Norte Am. 2016; 100:807- 26. https://doi.org/10.1016/j.mcna.2016.03.016 | spa |
| dcterms.references | Gu, C., Zhao, R., Zhang, X. et al. A meta-analysis of secondary osteoporosis in systemic lupus erythematosus: prevalence and risk factors. Arch Osteoporos 15, 1 (2020). https://doi.org/10.1007/s11657-019-0667-1 | eng |
| dcterms.references | Compston, J. Osteoporosis inducida por glucocorticoides: una actualización. Endocrino 61 , 7-16 (2018). https://doi.org/10.1007/s12020-018-1588-2 | spa |
| dcterms.references | Romero-Moreno, Jonathan Rodrigo, et al. "Síndrome metabólico en lupus eritematoso sistémico." El Residente 9.3 (2014): 116-123. https://www.medigraphic.com/pdfs/residente/rr- 2014/rr143e.pdf | spa |
| dcterms.references | Calvo Romina, Ortiz Alberto, Roverano Susana, Gallo Jésica, Benavente Emilio, Costa Lucas et al . Comparación de pacientes con lupus eritematoso sistémico tratados en centros públicos versus centros privados de salud. Rev. argent. reumatolg. [Internet]. 2020 Sep [citado 2024 Ene 10] ; 31( 3 ): 20-23. Disponible en: http://www.scielo.org.ar/scielo.php?script=sci_arttext&pid=S2362- 36752020000300002&lng=es. | spa |
| dcterms.references | Cano García Laura, García Díaz Silvia, Orcajo Blanco Cristina, Serrano Lora Rosa Mª. Perspectiva de la enfermera en el manejo del paciente con Lupus Eritematoso Sistémico. Index Enferm [Internet]. 2021 Sep [citado 2024 Ene 10] ; 30( 3 ): 265-269. Disponible en: http://scielo.isciii.es/scielo.php?script=sci_arttext&pid=S1132-12962021000200024&lng=es . Epub 06-Jun-2022. | spa |
| dcterms.references | Carbonell Jordá, Amelia;Mínguez Veja, Mauricio;Panadero Tendero, Gaspar;Bernabeu Gonzálvez, Pilar. Implicación clínica del profesional de enfermería en la consulta de reumatología. Reumatología Clínica 2008;4(6):228-231. Doi: https://doi.org/10.1016/S1699- 258X(08)75543-8. | spa |
| dcterms.references | Bech, Bianca;Primdahl, Jette;van Tubergen, Astrid;Voshaar, Marieke;et al. 2018 update of the EULAR recommendations for the role of the nurse in the management of chronic inflammatory arthritis. Annals of the Rheumatic Diseases 2020;79(1):61-68. Doi: https://doi.org/10.1136/annrheumdis-2019-215458. | eng |
| dcterms.references | Abásolo, Lydia;Blanco, Margarita;Bachiller, Javier;Candelas, Gloria;et al. A Health System Program To Reduce Work Disability Related to Musculoskeletal Disorders. Annals of Internal Medicine 2005;143(6):404. Doi: https://doi.org/10.7326/0003-4819-143-6-200509200-00005. | eng |
| oaire.version | info:eu-repo/semantics/publishedVersion |