Gómez-López A, Benito-León J, Labiano-Fontcuberta A, Moreno-García S, Salgado-Cámara P
Multiple Sclerosis Unit. Neurology Department, Hospital Universitario 12 de Octubre, Madrid, Spain.
Multiple Sclerosis Unit. Neurology Department, Hospital Universitario 12 de Octubre, Madrid, Spain; Centro de Investigación Biomédica en Red sobre Enfermedades Neurodegenerativas (CIBERNED), Madrid, Spain; Department of Medicine, Universidad Complutense, Madrid, Spain.
Mult Scler Relat Disord. 2023 Apr;72:104609. doi: 10.1016/j.msard.2023.104609. Epub 2023 Mar 7.
As their disease evolves, most patients with progressive forms of multiple sclerosis (MS) develop particular healthcare needs that are not always addressed with usual follow-up. To adapt neurological care to these patients, we created a specific consultation for patients with progressive MS in our centre in 2019.
To explore the main unmet care needs of patients with progressive MS in our setting, and to establish the usefulness of the specific consultation to address them.
Literature review and interviews with patients and healthcare professionals were conducted to identify the main unmet needs in routine follow-up. Two questionnaires were developed, assessing the importance of the unmet needs identified and the usefulness of the consultation to meet them, for patients under follow-up in the specific consultation and their informal caregivers.
Forty-one patients and nineteen informal caregivers participated. The most important unmet needs were the information about the disease, access to social services and coordination between specialists. A positive correlation was found between the importance of these unmet needs and the responsiveness to each of them in the specific consultation.
The creation of a specific consultation may improve attention to the healthcare needs of patients with progressive MS.
随着病情发展，大多数进展型多发性硬化症（MS）患者会出现特殊的医疗需求，而常规随访往往无法满足这些需求。为了使神经科护理能够适应这些患者的需求，我们于2019年在本中心为进展型MS患者设立了专门的会诊。
探讨我院进展型MS患者主要未得到满足的护理需求，并确定该专门会诊在满足这些需求方面的有效性。
通过文献综述以及与患者和医护人员的访谈，确定常规随访中主要未得到满足的需求。针对在专门会诊中接受随访的患者及其非正式照护者，编制了两份问卷，分别评估所确定的未满足需求的重要性以及会诊在满足这些需求方面的有效性。
41名患者和19名非正式照护者参与了研究。最重要的未满足需求是疾病信息、获得社会服务以及专家之间的协调。在这些未满足需求的重要性与专门会诊中针对每项需求的响应度之间发现了正相关关系。
设立专门会诊可能会改善对进展型MS患者医疗需求的关注。
