Viviendo con esclerosis múltiple: entendiendo los aspectos de la calidad de vida

Alexa Aguilar; Silvia Carolina Vázquez Monter

doi:10.37646/xihmai.v19i38.640

Authors

Alexa Aguilar Universidad La Salle Pachuca Facultad de Ciencias Humanas https://orcid.org/0009-0003-0619-1776
Silvia Carolina Vázquez Monter

DOI:

https://doi.org/10.37646/xihmai.v19i38.640

Keywords:

Multiple sclerosis, Quality of life, General well-being, Symptoms, Disaese

Abstract

A qualitative study focused on understanding the experience of living with multiple sclerosis is presented, analyzing how the disease affects the quality of life of people who suffer from it, making visible the complexity of this chronic condition and the importance of addressing it from a comprehensive approach. Through a case study conducted on April 11, 2024 at the Polytechnic University of Pachuca (UPP), through a semi-structured interview, detailed data were collected on the experiences of a person diagnosed with multiple sclerosis, the analysis was carried out using the ATLAS TI version 9.0 software. The findings obtained allowed the identification of eight factors that reflect the difficulty of living with this disease, covering physical, emotional and social dimensions, highlighting the significant impact on the patients' daily lives. The results obtained highlight the need for a multidimensional perspective, being essential for the development of strategies and programs that promote the overall well-being of people living with this condition.

Downloads

Download data is not yet available.

References

Ayache, S.; Serratrice, N.; Abi Lahoud, G. & Chalah, M. (2022). Fatigue in multiple sclerosis: a review of the exploratory and therapeutic potential of non-invasive brain stimulation. Frontiers in Neurology. https://doi.org/10.3389/fneur.2022.813965 DOI: https://doi.org/10.3389/fneur.2022.813965

Aymerich, M.; Guillamón, I.; Perkal, H.; Nos, C.; Porcel, J.; Berra, S., Rajmil, L. & Montalbán, X. (2006). Adaptación al español, del cuestionario específico MSQOL-54 para pacientes con esclerosis múltiple. Neurología, 21(4), 181–187.

Beckerman, J. P.; Aftosmes-Tobio, A.; Kitos, N.; Jurkowski, J. M.; Lansburg, K.; Kazik, C.; Gavarkovs, A.; Vigilante, A.; Kalyoncu, B.; Figueroa, R.; Klabunde, R.; Barouch, R.; Haneuse, S.; Taveras, E. & Davison, K. K. (2019). Communities for healthy living (CHL) - A family-centered childhood obesity prevention program integrated into Head Start services: Study protocol for a pragmatic cluster randomized trial. Contemporary Clinical Trials, 78, 34-45. https://doi.org/10.1016/j.cct.2019.01.002 DOI: https://doi.org/10.1016/j.cct.2019.01.002

Bellucci, C. H.; Wollner, J.; Gregorini, F.; Birnböck, D.; Kozomara, M.; Mehnert, U.; Schubert, M. & Kessler, T. (2013). Acute spinal cord injury--do ambulatory patients need urodynamic investigations? Journal Urol, 189(4), 1369-1373. https://doi.org/10.1016/j.juro.2012.10.013 DOI: https://doi.org/10.1016/j.juro.2012.10.013

Berrigan, L.; Fisk, J.; Patten, S.; Tremlett, H.; Wolfson, C.; Warren, S.; Fiest, K.; McKay, K. & Marrie, R. A. (2016). Health-related quality of life un multiple sclerosis direct and indirect effects of comorbidity. Neurology, 12(86), 1417-1424. https://doi.org/10.1212/wnl.0000000000002564 DOI: https://doi.org/10.1212/WNL.0000000000002564

Brownlee, W.; Hardy, T.; Fazekas, F. & Miller, D. (2017). Diagnosis of multiple sclerosis: progress and challenges. Lancet, 389(10076), 1336-1346. https://doi.org/10.1016/s0140-6736(16)30959-x DOI: https://doi.org/10.1016/S0140-6736(16)30959-X

Chiaravalloti, N. & DeLuca, J. (2008). Cognitive impairment in multiple sclerosis. Lancet Neurology, 7(12), 1139-1151. https://doi.org/10.1016/s1474-4422(08)70259-x DOI: https://doi.org/10.1016/S1474-4422(08)70259-X

Companioni, I. M.; Jiménez-Morales, R. M.; Jiménez, N.; Nápoles, Y. & Macías, Y. (2013). Calidad de vida en la esclerosis múltiple: su relación con la depresión, fatiga y calidad de sueño. Gaceta Médica Espirituana, 15(3), 245-254. http://scielo.sld.cu/scielo.php?script=sci_arttext&pid=S1608-89212013000300003

Deloire, M.; Salort, E.; Bonnet, M.; Arimone, Y.; Boudineau, M.; Amieva, H.; Barroso, B.; Ouallet, J.; Pachai, C.; Galliaud, E.; Petry, K.; Fabrigoule, C. & Brochet, B. (2005). Cognitive impairment as marker of diffuse brain abnormalities in early relapsing remitting multiple sclerosis. Journal Neurology Neurosurgery Psychiatry, 76(4), 519-526. https://doi.org/10.1136/jnnp.2004.045872 DOI: https://doi.org/10.1136/jnnp.2004.045872

Doshi, A & Chataway, J. (2016) Multiple sclerosis, a treatable disease. Clinical Medicine, 16(6), 53-59. https://doi.org/10.7861/clinmedicine.16-6-s53 DOI: https://doi.org/10.7861/clinmedicine.16-6-s53

Eizaguirre, M. B.; Yastremiz, C.; Ciufa, N.; Roman, M. S., Alonso, R.; Silva, B. A.; Garcea, O.; Cáceres, F. & Vanotti, S. (2023). Relevenace and impact of social support on quality of life for persons with multiple sclerosis. International Journal of Medical Social Care, 25(3), 99-103. https://doi.org/10.7224/1537-2073.2022-012 DOI: https://doi.org/10.7224/1537-2073.2022-012

Eldesoky, H. A.; Hasaan N. I.; Amer, M. A. & Mahmoud, H. M. (2021). Physical and psychosocial adaptation strategies for patients with multiple sclerosis. Egyptian Journal of Health Care, 12(1), 1475-1490. https://doi.org/10.21608/ejhc.2021.215908 DOI: https://doi.org/10.21608/ejhc.2021.215908

Fernández, J. (2002). El síndrome de fatiga crónica. Medicina Integral, 40(2), 56-63. https://www.elsevier.es/es-revista-medicina-integral-63-articulo-el-sindromefatiga-cronica-13034631

Fernández-López, J., Fernández-Fidalgo, M., Cieza, A. (2010). Los conceptos de calidad de vida, salud y bienestar analizados desde la perspectiva de la clasificación internacional del funcionamiento (CIF). Revista Española Salud Pública, 84(2), 169-184. https://scielo.isciii.es/pdf/resp/v84n2/especial4.pdf DOI: https://doi.org/10.1590/S1135-57272010000200005

Frohman, E.; Frohman, T.; Zee, D.; McColl, R. & Galetta, S. (2005). The neuro-ophthalmology of multiple sclerosis. The Lancet Neurology, 4(2). https://doi.org/10.1016/s1474-4422(05)00992-0 DOI: https://doi.org/10.1016/S1474-4422(05)00992-0

Gallego, D.; Jiménez, L. F.; López, P. A.; López, D. F; Marín, S.; Peñaloza, M. M.; Toro, C. V.; García, J. J. & Ramírez, N. (2016). Relación entre la esclerosis múltiple y la calidad de vida. Revista Investigación Universidad Quindío, 28(2), 9-21. DOI: https://doi.org/10.33975/riuq.vol28n2.4

Grau-López, L.; Sierra, S.; Martínez-Cáceres, E. & Ramo-Tello, C. (2011). Analysis of the pain in multiple sclerosis patients. Neurología, 26(4), 208-213. https://doi.org/10.1016/j.nrl.2010.07.014 DOI: https://doi.org/10.1016/S2173-5808(11)70043-8

Haraldstad, K.; Wahl, A.; Andenaes, R.; Andersen, J. R.; Andersen, M. H.; Beisland, E.; Borge, C. R.; Engebretsen, E.; Eismann, M.; Hanssen, T. A; Haugstvedt, A.; Haugland, T.; Johansen, V. A; Larsen, M. H.; Lovereide, L.; Loyland, B.; Kvarme, L. G.; Moons, P.; Norekvål, T. M.; Ribu, L.; Rohde, G. E.; Urstad, K. H. & Helseth, S. (2017). A systematic review of quality of life research in medicine and health sciences. International Journal of Cardiology, (243), 174-179. https://doi.org/10.1007/s11136-019-02214-9 DOI: https://doi.org/10.1007/s11136-019-02214-9

Hind, D.; Cotter, J.; Thake, A.; Bradburn, M.; Cooper, C.; Isaac, C. & House, A. (2014). Cognitive behavioural therapy for the treatment of depression in people with multiple sclerosis: a systematic review and meta-analysis. BMC Psychiatry, 14(5). https://doi.org/10.1186/1471-244x-14-5 DOI: https://doi.org/10.1186/1471-244X-14-5

Jones S.; McMullen, J.; Campbell, R.; McLaughlin, J.; McDade, B.; O’Lynn, P. & Glen, C. (2018). Multilingual minds: the mental health and wellbeing of newcomer children and young people in Northern Ireland and the role of the education authority youth service. Stranmillis University College.

Kang, W. (2022). Understanding the effect of multiple sclerosis on general and dimensions of mental health. Journal of Clinical Medicine, 11(24). https://doi.org/10.3390/jcm11247483 DOI: https://doi.org/10.3390/jcm11247483

Koch, M.; Glazenborg, A.; Uyttenboogaart, M.; Mostert, J. & De Keyser, J. (2011). Pharmacologic treatment of depression in multiple sclerosis. Cochrane Database Systematic Reviews, 16(2). https://doi.org/10.1002/14651858.cd007295.pub2 DOI: https://doi.org/10.1002/14651858.CD007295.pub2

Mattarozzi, K.; Casini, F.; Baldin, E.; Baldini, M.; Lugaresi, A.; Milani, P.; Pietrolongo, E.; Gajofatto, A.; Leone, M.; Riise; T., Vignatelli, L. & D´Alessandro, R. (2015). Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure. Health Expectations, 19(2), 437-447. https://doi.org/10.1111/hex.12367 DOI: https://doi.org/10.1111/hex.12367

Mesaros, S.; Rocca, M. A.; Kacar, K.; Kostic, J.; Copetti, M.; Stosic-Opincal, T. & Reziosa, P. (2012). Diffusion tensor MRI tractography and cognitive impairment in multiple sclerosis. Neurology, 78(13), 969-975. https://doi.org/10.1212/WNL.0b013e31824d5859 DOI: https://doi.org/10.1212/WNL.0b013e31824d5859

Messerotti, A.; Banchelli, F.; Ferrari, S.; Barbieri, E.; Bettelli, F.; Bandieri, E.; Giusti, D.; Catellani, H.; Borelli, E.; Colaci, E., Pioli, V.; Morselli, M.; Forghieri, F.; Galeazzi, G. A.; Marasca, R.; Bigi, S.; D´Amico, R.; Martin, P.; Efficace, F.; Luppi, M. & Potenza, L. (2020). Investigating the association between physicians self-efficacy regarding communication skills and risk of “burnout”. Health and Quality of Life Outcomes, 18(271). https://doi.org/10.1186/s12955-020-01504-y DOI: https://doi.org/10.1186/s12955-020-01504-y

Miller, D.; Rudick, R. & Hutchinson, M. (2010). Resultados enfocados en el paciente: traducción de eficacia clínica en beneficios en la calidad de vida relacionada con la salud. Neurology, 74(3), 24-35. https://doi.org/10.1212/wnl.0b013e3181dbb884 DOI: https://doi.org/10.1212/WNL.0b013e3181dbb884

Moreno, B. & Ximénez, C. (1996). Evaluación de la calidad de vida. En Buela, G.; Caballo, V. & Sierra, C. (dirs), Manual de evaluación en Psicología Clínica y de la Salud, (1045-1070). Siglo XXI.

Polman, C.; Reingold, S.; Banwell, B.; Clanet, M.; Cohen, J.; Filippi, M.; Fujihara, K.; Havrdova, E.; Hutchinson, M.; Kappos, L.; Lublin, F.; Montalban, X.; O´Connor, P.; Sandberg-Wolheim, M.; Thompson, A.; Waubant, E.; Weinshenker, B. & Wolinsky, J. (2011). Diagnostic Criteria for Multiple Sclerosis: 2010 Revisions to the McDonald Criteria. American Neurological Association, 69(2), 292-302. https://doi.org/10.1002/ana.22366 DOI: https://doi.org/10.1002/ana.22366

Richards, R.; Sampson, F.; Beard, S.; Tappenden, P. (2002). A review of the natural history and epidemiology of multiple sclerosis: implications for resource allocation and health economic models. Health Technology Assessment, 6(10). https://doi.org/10.3310/hta6100 DOI: https://doi.org/10.3310/hta6100

Rivera, V. M. (2018). Multiple Sclerosis: a global concern wioth multiple challenges in an Era of advanced therapeutic complex molecules and biological medicines. Biomedicines, 6(4). https://doi.org/10.3390/biomedicines6040112 DOI: https://doi.org/10.3390/biomedicines6040112

Rocca, C.; Moseson, H.; Gould, H.; Foster, D. & Kimport, K. (2021). Emotions over five years after denial of abortion in the United States: Contextualizing the effects of abortion denial on women's health and lives. Social Science & Medicine, (269). https://doi.org/10.1016/j.socscimed.2020.113567 DOI: https://doi.org/10.1016/j.socscimed.2020.113567

Rodríguez, J. F. (2012). Esclerosis múltiple: una enfermedad degenerativa. Cuadernos del Tomás, (4), 240-257.

Rothrock, N.; Peterman, A. & Cella, D. (2023). Evaluation of health-related quality of life (HRQL) in patients with a serious life-threatening illness. Wolters Kluwer.

Salinas-Pérez, V. M. (2011). Significación en el diagnóstico de esclerosis múltiple y experiencia ante el descubrimiento de la enfermedad. [Tesis doctoral] Universidad de Málaga. http://hdl.handle.net/10630/5486

Sampieri, R.; Fernández, C. & Baptista, P. (2014). Metodología de la Investigación. Mc Graw Hill.

Secretaria de Salud. (29 de mayo de 2017). En México alrededor de 20 mil personas tienen esclerosis múltiple. [Página Web]. Gobierno de México. https://www.gob.mx/salud/prensa/221-en-mexico-alrededor-de-20-mil-personas-tienen-esclerosis-multiple#:~:text=En%20México%20alrededor%20de%2020,(músculos%20tensos%20y%20rígidos)

Solano, G. & Camacho, S. (2004). Reflexiones de salud y vida. Viviendo con una enfermedad crónica. Desarrollo Científico de Enfermería, 12, 291-295.

Solaro, C.; Gamberini, G. & Masuccio, F. G. (2018). Depression in Multiple Sclerosis: Epidemiology, Aetiology, Diagnosis and Treatment. CNS Drugs, 32, 117–133. https://doi.org/10.1007/s40263-018-0489-5 DOI: https://doi.org/10.1007/s40263-018-0489-5

Thompson, A.; Baranzini, S.; Geurts, J.; Hemmer, B. & Ciccarelli, O. (2018). Multiple Sclerosis. Lancet, 391(10130), 1622-1636. https://doi.org/10.1016/s0140-6736(18)30481-1 DOI: https://doi.org/10.1016/S0140-6736(18)30481-1

Vázquez, L. A.; Hidalgo, C.; Beltrán, B. M.; Broche, Y. & Mederos, A. M. (2021). Calidad de Vida relacionada con la salud en pacientes con esclerosis múltiple. MediSur, 20(1), 45-51. http://scielo.sld.cu/scielo.php?script=sci_arttext&pid=S1727-897X2022000100044

Zwibel, H. L. & Smrtka, J. (2011) Improving quality of life in multiple sclerosis: an unmet need. The American Journal of Managed Care, 17(5). https://www.ajmc.com/view/improving-quality-of-life-in-multiple-sclerosis-an-unmet-need