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1.
J Neurol ; 271(3): 1084-1107, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38219252

RESUMO

PURPOSE: Cognitive behavioural therapies (CBTs) are a standard of care for treatment of many 'hidden symptoms' in people with MS (PwMS), such as stress, depression, and fatigue. However, these interventions can vary widely in formatting and may not be tailored for PwMS. To optimize CBTs for MS, understanding the experiences of PwMS and clinicians is essential. This systematic review and meta-aggregation synthesizes existing qualitative data on stakeholder perspectives of CBTs for PwMS. METHODS: Systematic searches across five major electronic databases were conducted. Studies reporting qualitative data were identified. Two reviewers performed screening, quality assessment, data extraction, and certainty of evidence assessments. Meta-aggregation was performed as per the Joanna Briggs Institute approach, entailing qualitative data extraction, developing categories, and synthesizing overall findings. RESULTS: Twenty-eight studies were included in this review, comprising data from 653 PwMS and 47 clinicians. In the meta-aggregation, 122 qualitative results were extracted and grouped into nine categories. Categories were then combined into six synthesized findings: (1) setting the context-life with MS, (2) reasons for participating in CBTs, (3) acceptability of and experiences with participating in CBTs, (4) perceived benefits of CBTs, (5) perceived challenges with CBTs, and (6) suggestions to improve CBTs for PwMS. CONCLUSIONS: A range of benefits including psychological, social, and lifestyle improvements were reported, but varied based on the design of the CBT intervention. Future CBT interventions should be tailored to participant needs, delivered in group settings, offer online options, and be delivered by a trained facilitator familiar with MS. Further exploration of the ideal CBT design for PwMS, as well as engagement with caregivers and clinicians treating MS, is warranted.


Assuntos
Terapia Cognitivo-Comportamental , Esclerose Múltipla , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia
2.
J Neurol ; 270(3): 1300-1322, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36445508

RESUMO

OBJECTIVE: Compassion is widely regarded as an important component of high-quality healthcare. However, its conceptualization, use, and associated outcomes in the care of people with multiple sclerosis (PwMS) have not been synthesized. The aim of this review is to scope the peer reviewed academic literature on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. METHODS: Studies were eligible for inclusion if reporting primary research data from quantitative, qualitative, or mixed-methods studies on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Relevant studies were identified through searching five electronic databases (CINAHL, Cochrane Library, EMBASE, MEDLINE, and PsycINFO) in January 2022. We followed the guidance outlined in the Joanna Briggs Institute (JBI) manual for evidence synthesis, and also referred to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews Checklist (PRISMA-ScR). Simple descriptive methods were used to chart quantitative findings, and a descriptive approach with basic content analysis was employed to describe qualitative findings. RESULTS: Fifteen studies were included (participant n = 1722): eight quantitative, six mixed-methods, one exclusively qualitative. Synthesized qualitative data revealed that PwMS conceptualize compassion as involving self-kindness, agency, and acceptance. PwMS report using self-compassion in response to unpleasant sensations and experiences. Quantitative findings suggest that compassion may mediate benefit finding, reduced distress, and improved quality of life (QoL) in PwMS, that those with the condition may become more compassionate through time, and that self-compassion specifically can be increased through training in mindfulness. In this context, greater self-compassion in PwMS correlates with less depression and fatigue, better resilience and QoL. Among studies, self-compassion was the most common outcome measure for PwMS. CONCLUSIONS: A nascent literature exists on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Further research is required to better understand what compassion means to PwMS and those caring for them. However, self-compassion can be cultivated among PwMS and may be helpful for managing unpleasant somatic symptoms and in benefit finding. Impact on other health outcomes is less clear. The use of compassion by health care providers in the care of PwMS is unstudied.


Assuntos
Empatia , Esclerose Múltipla , Humanos , Formação de Conceito , Pessoal de Saúde , Esclerose Múltipla/terapia , Qualidade de Vida
3.
J Neurol ; 270(2): 726-745, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36348069

RESUMO

BACKGROUND: Quality of life (QoL) is commonly impaired among people with multiple sclerosis (PwMS). The aim of this study was to evaluate via meta-analysis the efficacy of Mindfulness-based interventions (MBIs) for improving QoL in PwMS. METHODS: Eligible randomized controlled trials (RCTs) were identified via searching six major electronic databases (MEDLINE, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, AMED, and PsycINFO) in April 2022. The primary outcome was QoL. Study quality was determined using the Cochrane Collaboration risk of bias tool. Meta-analysis using a random effects model was undertaken. Effect sizes are reported as Standardized Mean Difference (SMD). Prospero ID: 139835. RESULTS: From a total of 1312 individual studies, 14 RCTs were eligible for inclusion in the meta-analysis, total participant n = 937. Most studies included PwMS who remained ambulatory. Cognitively impaired PwMS were largely excluded. Comorbidities were inconsistently reported. Most MBIs were delivered face-to face in group format, but five were online. Eight studies (n = 8) measured MS-specific QoL. In meta-analysis, overall effect size (SMD) for any QoL measure (n = 14) was 0.40 (0.18-0.61), p = 0.0003, I2 = 52%. SMD for MS-specific QoL measures (n = 8) was 0.39 (0.21-0.57), p < 0.0001, I2 = 0%. MBI effect was largest on subscale measures of mental QoL (n = 8), SMD 0.70 (0.33-1.06), p = 0.0002, I2 = 63%. Adverse events were infrequently reported. CONCLUSIONS: MBIs effectively improve QoL in PwMS. The greatest benefits are on mental health-related QoL. However, more research is needed to characterize optimal formatting, mechanisms of action, and effects in PwMS with more diverse social, educational, and clinical backgrounds.


Assuntos
Atenção Plena , Esclerose Múltipla , Humanos , Comorbidade , Qualidade de Vida , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Viés
4.
Neurodegener Dis Manag ; 9(6): 301-317, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31769344

RESUMO

Identifying the transition of relapsing-remitting multiple sclerosis (MS) to the secondary-progressive MS form remains a clinical challenge due to the gradual nature of the transition, superimposed relapses, the heterogeneous course of disease among patients and the absence of validated biomarkers and diagnostic tools. The uncertainty associated with the transition makes clinical care challenging for both patients and physicians. The emergence of new disease-modifying treatments for progressive MS and the increasing emphasis of nonpharmacological strategies mark a new era in the treatment of progressive MS. This article summarizes challenges in diagnosis and management, discusses novel treatment strategies and highlights the importance of establishing a clear diagnosis and instituting an interdisciplinary management plan in the care of patients with progressive MS.


Assuntos
Gerenciamento Clínico , Progressão da Doença , Imunossupressores/uso terapêutico , Esclerose Múltipla Crônica Progressiva/diagnóstico por imagem , Esclerose Múltipla Crônica Progressiva/tratamento farmacológico , Fármacos Neuroprotetores/uso terapêutico , Biomarcadores/sangue , Cuidadores/tendências , Pessoal de Saúde/tendências , Humanos , Imageamento por Ressonância Magnética/métodos , Imageamento por Ressonância Magnética/tendências , Esclerose Múltipla Crônica Progressiva/sangue , Moduladores do Receptor de Esfingosina 1 Fosfato/uso terapêutico
5.
Am J Phys Med Rehabil ; 88(4): 264-6, 2009 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-18971772

RESUMO

We present the previously unreported hazard of creating pressure ulceration in a susceptible host by the improper use of a silicone prosthetic liner. An 80-yr-old man sustained a recent transtibial amputation for peripheral vascular disease. His comorbidities included vascular cognitive impairment, type 2 diabetes mellitus, coronary artery disease, anemia of chronic disease, postherpetic neuralgia, and pruritus of uncertain origin. When not using his transtibial prosthesis, he found his 1.5-mm thick silicone liner (ICEROSS) more comfortable to wear than his stump shrinker and thermoplastic protector. Moreover, he repeatedly wore his liner rolled partway down his stump to allow him to scratch pruritic skin. A horizontal, linear, stage 2 ulcer developed on the residual limb under the upper edge of the rolled liner. The ulcer required >3 mos to heal. This case illustrates the importance of candidate selection for roll-on liners, proper patient and professional training, and optimal management of patient comorbidities.


Assuntos
Cotos de Amputação/patologia , Membros Artificiais/efeitos adversos , Úlcera por Pressão/etiologia , Silicones/efeitos adversos , Tíbia , Idoso de 80 Anos ou mais , Emolientes/uso terapêutico , Humanos , Masculino , Vaselina/uso terapêutico , Úlcera por Pressão/terapia
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