Unit of Neuroepidemiology, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.
Unit of Neuroimmunology and Neuromuscular Diseases, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy.
PLoS One. 2020 Feb 13;15(2):e0228587. doi: 10.1371/journal.pone.0228587. eCollection 2020.
Conversion to secondary progressive multiple sclerosis (SPMS) is associated with a relatively poor prognosis, and SPMS is responsible for the majority of the social and economic costs associated with MS. Managing the Transition to SPMS (ManTra) is a mixed methods project conducted in Italy and Germany aimed to set up a user-led resource to empower and improve the quality of life of newly diagnosed SPMS patients.
To assess the experiences and the needs of Italian people who recently converted to SPMS, patient significant others (SOs), neurologists and other health professionals (HPs).
We conducted 15 personal semistructured interviews (PSIs) with SPMS patients who transitioned up to five years, and three focus group meetings (FGMs), one of SPMS SOs, one of neurologists, and one of other HPs. Participants were purposely selected from the three geographic areas of Italy, and varied in terms of gender, education and (for patients) disease severity. PSIs and FGMs were audiorecorded, transcribed and analyzed by two researchers using the framework analysis.
One hundred sub-categories were identified, grouped into 13 categories and four themes: 'awareness of the transition', 'communication of the transition', 'dealing with symptoms worsening', and 'needs'. The major unmet needs were collected in four dimensions 'organization and management; 'empowerment training'; 'information'; and 'policies'.
Two are the main findings: first, the widespread lack of awareness around the transition; second, the need to improve the quality of the care pathway in the Italian context. It was particularly stressed the need for a holistic and multidisciplinary approach (with patients and SOs as members of the team), the development of an ad hoc plan of follow up visits with easy access to MS specialists' consultation/treatment; specialized training for each stakeholders; more information on SPMS, daily management and changes at policy level.
从复发缓解型多发性硬化症（RRMS）向继发进展型多发性硬化症（SPMS）的转化与预后较差相关，且 SPMS 是导致 MS 相关社会和经济成本的主要原因。“管理向 SPMS 的过渡（ManTra）”是在意大利和德国开展的混合方法项目，旨在建立一个以患者为主导的资源，为新诊断为 SPMS 的患者赋能并改善其生活质量。
评估最近转化为 SPMS 的意大利患者、患者的重要他人（SO）、神经科医生和其他卫生专业人员（HPs）的经验和需求。
我们对 15 名 SPMS 患者进行了 15 次个人半结构化访谈（PSIs），这些患者的转化时间为 5 年，还进行了 3 次焦点小组会议（FGMs），一次为 SPMS SO，一次为神经科医生，一次为其他 HPs。参与者是从意大利的三个地理区域有目的地选择的，他们在性别、教育程度（对患者而言是疾病严重程度）方面存在差异。使用框架分析，由两名研究人员对 PSIs 和 FGMs 进行录音、转录和分析。
确定了 100 个子类别，分为 13 个类别和 4 个主题：“对过渡的认识”、“过渡的沟通”、“应对症状恶化”和“需求”。四个维度中存在主要的未满足需求：“组织和管理”、“赋能培训”、“信息”和“政策”。
有两个主要发现：首先，对过渡的普遍认识不足；其次，需要改善意大利背景下的护理途径质量。特别强调需要采取整体和多学科的方法（让患者及其 SO 成为团队成员）、制定专门的随访计划，便于患者获得 MS 专家的咨询/治疗；对每个利益相关者进行专门培训；提供更多关于 SPMS、日常管理和政策层面变化的信息。
