Palliative care interventions for people with multiple sclerosis

Latorraca, Carolina Oliveira Cruz; Martimbianco, Ana Luiza Cabrera; Pachito, Daniela Vianna; Torloni, Maria Regina; Pacheco, Rafael Leite; Pereira, Juliana Gomes; Riera, Rachel

doi:10.1002/14651858.cd012936.pub2

Cited by 14 publications

(23 citation statements)

References 49 publications

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“…One was a Cochrane review on PC in MS patients, which included the same RCTs as in our IPDMA. 64 It should be noted, however, that in this systematic review pain and sleeping problems were considered as PC adverse events and the pre-specified secondary outcome measures included relapse-free survival, progression-free survival, neuropsychological assessment and the EDSS. 64 The other study was a pragmatic RCT from the UK, which demonstrated that a standing frame programme significantly increased motor function in people with severe MS and was cost-effective in comparison to standard care.…”

Section: Discussionmentioning

confidence: 99%

EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis

Solari

Giordano

Sastre‐Garriga

et al. 2020

Journal of Palliative Medicine

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Background and Purpose: Patients with severe, progressive multiple sclerosis (MS) have complex physical and psychosocial needs, typically over several years. Few treatment options are available to prevent or delay further clinical worsening in this population. The objective was to develop an evidence-based clinical practice guideline for the palliative care of patients with severe, progressive MS. Methods: This guideline was developed using the Grading of Recommendations Assessment, Development and Evaluation methodology. Formulation of the clinical questions was performed in the Patients-Intervention-Comparator-Outcome format, involving patients, carers and healthcare professionals (HPs). No uniform definition of severe MS exists: in this guideline, constant bilateral support required to walk 20 m without resting (Expanded Disability Status Scale score >6.0) or higher disability is referred to. When evidence was lacking for this population, recommendations were formulated using indirect evidence or good practice statements were devised.

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Section: Discussionmentioning

confidence: 99%

EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis

Solari

Giordano

Sastre‐Garriga

et al. 2020

Journal of Palliative Medicine

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“…Two pertinent studies have been published since the search was closed. One was a Cochrane review on PC in MS patients, which included the same RCTs as in our IPDMA [64]. It should be noted, however, that in this systematic review pain and sleeping problems were considered as PC adverse events and the pre‐specified secondary outcome measures included relapse‐free survival, progression‐free survival, neuropsychological assessment and the EDSS [64].…”

Section: Discussionmentioning

confidence: 99%

“…One was a Cochrane review on PC in MS patients, which included the same RCTs as in our IPDMA [64]. It should be noted, however, that in this systematic review pain and sleeping problems were considered as PC adverse events and the pre‐specified secondary outcome measures included relapse‐free survival, progression‐free survival, neuropsychological assessment and the EDSS [64]. The other study was a pragmatic RCT from the UK, which demonstrated that a standing frame programme significantly increased motor function in people with severe MS and was cost‐effective in comparison to standard care [65].…”

Section: Discussionmentioning

confidence: 99%

EAN guideline on palliative care of people with severe, progressive multiple sclerosis

Solari

Giordano

Sastre‐Garriga

et al. 2020

Euro J of Neurology

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“…La EM es una enfermedad progresiva y crónica, que afecta a 2,3 millones de pacientes en todo el mundo. Se trata de una enfermedad autoinmune e inflamatoria, con afectación de la vaina de mielina de las neuronas del cerebro y la médula espinal, con pérdida gradual de neuronas y axones (35) . Esta patología afecta al desempeño de las actividades cotidianas, a la autonomía del paciente y a su CdV (35) .…”

Section: Esclerosis Múltiple (Em)unclassified

“…Se trata de una enfermedad autoinmune e inflamatoria, con afectación de la vaina de mielina de las neuronas del cerebro y la médula espinal, con pérdida gradual de neuronas y axones (35) . Esta patología afecta al desempeño de las actividades cotidianas, a la autonomía del paciente y a su CdV (35) . Es común la presencia de pérdida de peso y condición de desnutrición en estadios avanzados de la EM, debido a complicaciones en la alimentación, pérdida de hambre, náuseas, aumento del gasto energético y proteico, incremento de las pérdidas relacionadas con la condición inflamatoria crónica, sarcopenia correlacionada con menor actividad física, afectación cognitiva, úlceras por presión, polifarmacia y disfagia neurógena.…”

Section: Esclerosis Múltiple (Em)unclassified

Recomendaciones nutricionales en cuidados paliativos para pacientes con enfermedades avanzadas y al final de la vida

Muscogiuri¹,

Barrera²,

Carignano³

et al. 2021

Rev. Nutr. Clin. Metab.

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Los cuidados paliativos (CP) se basan en un abordaje multidisciplinar del paciente y su familia para prevenir y aliviar el sufrimiento del paciente, al promover y mantener una óptima calidad de vida hasta la muerte. La alimentación desempeña un papel fundamental en la vida de las personas. Más allá de la nutrición, el hecho de que las personas moribundas tengan anorexia como parte de sus síntomas es difícil de aceptar, ya que significa admitir la muerte. Un plan multidisciplinar de nutrición es fundamental, que se adapte al estadio de la enfermedad, siempre considerando que los beneficios deben superar los posibles efectos adversos. Como parte integral de la CP, la nutrición e hidratación artificiales (NHA) pueden aumentar la supervivencia y mejorar la calidad de vida en pacientes seleccionados en función de su patología. Por tanto, el soporte nutricional debe prescribirse de acuerdo con el estadio de la enfermedad del paciente y los requerimientos energéticos y proteicos, analizando la tolerabilidad y, sobre todo, respetando los deseos del paciente, la familia y el cuidador. Es fundamental conocer sus preferencias y lograr una comunicación eficiente dentro del equipo de salud. Al hacerlo, es posible alcanzar un entendimiento compartido de los objetivos del tratamiento paliativo entre todos los miembros involucrados. Esta revisión narrativa tiene como objetivo describir las recomendaciones nutricionales generales y específicas en la etapa avanzada y al final de la vida de algunas de las enfermedades primarias en las que los CP desempeñan un papel vital para ofrecer un tratamiento completo a estos pacientes específicos.

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Palliative care interventions for people with multiple sclerosis

Cited by 14 publications

References 49 publications

EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis

EAN Guideline on Palliative Care of People with Severe, Progressive Multiple Sclerosis

EAN guideline on palliative care of people with severe, progressive multiple sclerosis

Recomendaciones nutricionales en cuidados paliativos para pacientes con enfermedades avanzadas y al final de la vida

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