编辑来信

Francois Bethoux
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I can’t help but draw a parallel with the daily experiences of the individuals with multiple sclerosis (MS) who entrust their care to us (keeping in mind that I do not speak from personal experience dealing with this unrelenting disease). Some of my patients’ feelings when facing a regular workday seem akin to my first perception of climbing a 40-ft wall, but after a realistic evaluation of one’s abilities and of the risks involved, it is often a matter of mindset, strategy, and teamwork. I was enticed by my daughter to take on this activity, and we have made it a family experience, cheering for each other. I learned to trust the safety equipment and the belayer. I also learned to focus on the task at hand (forgetting my fears for a moment) and to believe at least a little in myself, even if my performance isn’t always up to my expectations. I will not belabor my point here, but I consider this experience an opportunity to gain more respect and admiration for the resourcefulness of my patients in facing the consequences of MS.Disease-modifying therapies (DMTs) continue to be the mainstay of MS management. Although the advent of infusion therapies has allowed a closer monitoring of treatment adherence, many DMTs continue to be self-managed. In this issue of the International Journal of MS Care, the scoping review by Ben-Zacharia and colleagues summarizes evidence on factors related to treatment adherence, whereas Neter and Miller propose a personalized program to improve adherence. Medication adverse effects are consistently identified as impacting DMT adherence: Bou Rjeily and colleagues report on 2 cases of serum sickness–like reaction after infusion of ocrelizumab.In their analysis of 30-day all-cause hospital readmissions in individuals with neuromyelitis optica spectrum disorder, Padarti and colleagues highlight comorbid conditions as predictors of readmission. Although not identified as a factor in this particular study, sleep disorders are a very common comorbidity in individuals with MS and other central neuroimmune disorders. Behavioral interventions have emerged as potentially effective in some sleep-related symptoms. The systematic review by Siengsukon and colleagues summarizes the evidence supporting the use of behavioral interventions such as cognitive behavioral therapy, although much investigation remains to be done.Upper extremity function is commonly affected by MS yet not routinely assessed, and interventions to improve upper extremity performance have not been as thoroughly tested as those targeting gait and balance. As highlighted by the work from Van Munster and colleagues, although upper extremity impairment is often concomitant with lower extremity impairment, it is a distinct problem.Hersh and colleagues report on the Consortium of Multiple Sclerosis Centers task force to collate evidence and expert opinion on diversity, equity, and inclusion in their organization and the larger community of MS care. They report on their process, including a mission statement adopted in March 2023 and a membership survey, and propose recommendations for next steps.In these times of growing concern regarding the consequences of climate change, forever mutating viruses, and other world events, I hope you will enjoy our journal’s contribution to the understanding and evolution of comprehensive MS care. 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Medication adverse effects are consistently identified as impacting DMT adherence: Bou Rjeily and colleagues report on 2 cases of serum sickness–like reaction after infusion of ocrelizumab.In their analysis of 30-day all-cause hospital readmissions in individuals with neuromyelitis optica spectrum disorder, Padarti and colleagues highlight comorbid conditions as predictors of readmission. Although not identified as a factor in this particular study, sleep disorders are a very common comorbidity in individuals with MS and other central neuroimmune disorders. Behavioral interventions have emerged as potentially effective in some sleep-related symptoms. 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引用次数: 0

摘要

弗朗索瓦·贝苏克利夫兰诊所首席医师美国俄亥俄州克利夫兰几个月前,我开始学习攀岩。了解我的人会觉得这个想法很有趣。我没有那么年轻(尽管虚荣心使我不能在这里透露我的年龄),也没有那么健康,充满焦虑和自我怀疑,去健身房的想法会让我感到轻微的胃部不适(请不要告诉别人,因为我要求我所有的病人克服他们不愿锻炼的心理)。最重要的是,我恐高;我放弃了清理排水沟,站在帝国大厦的观景台上不可避免地导致恐慌症状,尽管我非常清楚没有危险。然而,除了散步,登山现在是我最喜欢的运动方式。我不禁将自己的经历与那些将他们的照顾托付给我们的多发性硬化症(MS)患者的日常经历进行比较(请记住,我所说的并非来自与这种无情疾病打交道的个人经历)。我的一些病人在面对常规工作日时的感受似乎与我对爬40英尺高的墙的第一印象相似,但在对一个人的能力和所涉及的风险进行现实评估之后,这通常是心态、策略和团队合作的问题。我是被我的女儿吸引来参加这个活动的,我们把它变成了一个家庭体验,互相加油。我学会了信任安全设备和保护员。我还学会了专注于手头的任务(暂时忘记我的恐惧),并至少对自己有一点信心,即使我的表现并不总是达到我的期望。我不会在这里详细阐述我的观点,但我认为这次经历是一个机会,可以为我的病人在面对多发性硬化症后果时的足智多谋赢得更多的尊重和钦佩。尽管输液疗法的出现使得对治疗依从性的监测更加密切,但许多dmt仍然是自我管理的。在这一期的《国际多发性硬化护理杂志》上,Ben-Zacharia及其同事总结了与治疗依从性相关因素的证据,而Neter和Miller则提出了一个个性化的方案来提高依从性。药物不良反应一直被认为是影响DMT依从性的因素:Bou Rjeily及其同事报告了2例输注ocrelizumab后的血清疾病样反应。在他们对视神经脊髓炎谱系障碍患者30天全因再入院的分析中,Padarti和同事强调了合并症是再入院的预测因素。虽然在这项特殊的研究中没有确定睡眠障碍是一个因素,但睡眠障碍在多发性硬化症和其他中枢神经免疫疾病患者中是一个非常常见的合并症。行为干预在一些与睡眠有关的症状中可能有效。Siengsukon及其同事的系统综述总结了支持使用行为干预措施(如认知行为疗法)的证据,尽管仍有许多研究要做。多发性硬化症通常会影响上肢功能,但尚未进行常规评估,改善上肢功能的干预措施尚未像针对步态和平衡的干预措施那样得到彻底的测试。正如Van Munster及其同事的工作所强调的那样,尽管上肢损伤通常伴随下肢损伤,但这是一个明显的问题。Hersh和他的同事报告了多发性硬化症中心联盟的任务小组,他们在组织和更大的多发性硬化症护理社区中整理了关于多样性、公平性和包容性的证据和专家意见。他们报告了他们的过程,包括2023年3月通过的使命宣言和成员调查,并提出了下一步的建议。在人们对气候变化、永久变异病毒和其他世界事件的后果日益关注的时代,我希望你会喜欢我们的期刊对理解和发展综合MS护理的贡献。我们的整个编辑和出版团队都祝福您。
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LETTER FROM THE EDITOR
FRANCOIS BETHOUX, MDEDITOR IN CHIEFCleveland ClinicCleveland, Ohio, USAA few months ago, I took up rock climbing. Those who know me well will find the thought amusing. I am not that young (although vanity prevents me from disclosing my age here), not that fit, laden with anxiety and self-doubt, and the idea of going to the gym generates a mild gastric discomfort in me (please keep this between us, as I ask all my patients to overcome their reluctance to exercise). Above all, I’m afraid of heights; I gave up cleaning my gutters, and standing on the observation platform of the Empire State Building inevitably results in panic symptoms even though I know perfectly well that there is no danger. Yet, aside from walking, climbing is now my preferred form of exercise. I can’t help but draw a parallel with the daily experiences of the individuals with multiple sclerosis (MS) who entrust their care to us (keeping in mind that I do not speak from personal experience dealing with this unrelenting disease). Some of my patients’ feelings when facing a regular workday seem akin to my first perception of climbing a 40-ft wall, but after a realistic evaluation of one’s abilities and of the risks involved, it is often a matter of mindset, strategy, and teamwork. I was enticed by my daughter to take on this activity, and we have made it a family experience, cheering for each other. I learned to trust the safety equipment and the belayer. I also learned to focus on the task at hand (forgetting my fears for a moment) and to believe at least a little in myself, even if my performance isn’t always up to my expectations. I will not belabor my point here, but I consider this experience an opportunity to gain more respect and admiration for the resourcefulness of my patients in facing the consequences of MS.Disease-modifying therapies (DMTs) continue to be the mainstay of MS management. Although the advent of infusion therapies has allowed a closer monitoring of treatment adherence, many DMTs continue to be self-managed. In this issue of the International Journal of MS Care, the scoping review by Ben-Zacharia and colleagues summarizes evidence on factors related to treatment adherence, whereas Neter and Miller propose a personalized program to improve adherence. Medication adverse effects are consistently identified as impacting DMT adherence: Bou Rjeily and colleagues report on 2 cases of serum sickness–like reaction after infusion of ocrelizumab.In their analysis of 30-day all-cause hospital readmissions in individuals with neuromyelitis optica spectrum disorder, Padarti and colleagues highlight comorbid conditions as predictors of readmission. Although not identified as a factor in this particular study, sleep disorders are a very common comorbidity in individuals with MS and other central neuroimmune disorders. Behavioral interventions have emerged as potentially effective in some sleep-related symptoms. The systematic review by Siengsukon and colleagues summarizes the evidence supporting the use of behavioral interventions such as cognitive behavioral therapy, although much investigation remains to be done.Upper extremity function is commonly affected by MS yet not routinely assessed, and interventions to improve upper extremity performance have not been as thoroughly tested as those targeting gait and balance. As highlighted by the work from Van Munster and colleagues, although upper extremity impairment is often concomitant with lower extremity impairment, it is a distinct problem.Hersh and colleagues report on the Consortium of Multiple Sclerosis Centers task force to collate evidence and expert opinion on diversity, equity, and inclusion in their organization and the larger community of MS care. They report on their process, including a mission statement adopted in March 2023 and a membership survey, and propose recommendations for next steps.In these times of growing concern regarding the consequences of climate change, forever mutating viruses, and other world events, I hope you will enjoy our journal’s contribution to the understanding and evolution of comprehensive MS care. Our entire editorial and publishing team wishes you well.
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来源期刊
International journal of MS care
International journal of MS care Nursing-Advanced and Specialized Nursing
CiteScore
3.00
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0.00%
发文量
40
期刊最新文献
Impact of Fingolimod Discontinuation Strategy on Recurrence of Disease Activity in Individuals With Multiple Sclerosis. Expanding the Connection Between Cognition and Illness Intrusiveness in Multiple Sclerosis. Cognitive Function in Frail Older Adults With Multiple Sclerosis: An Exploratory Study Using Secondary Data Analysis. Exploring the Complexity of Falls in People With Multiple Sclerosis: A Qualitative Study. Reasons for Hospital Admission in Individuals With Multiple Sclerosis.
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