Giovannetti Ambra Mara, Barabasch Anna, Giordano Andrea, Quintas Rui, Barello Serena, Graffigna Guendalina, Alfieri Sara, Schiffmann Insa, Muche-Borowski Cathleen, Borreani Claudia, Heesen Christoph, Solari Alessandra
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.
Front Neurol. 2020 Aug 18;11:798. doi: 10.3389/fneur.2020.00798. eCollection 2020.
ManTra is a mixed-methods, co-production research project for developing an intervention (resource) for people with newly diagnosed secondary progressive multiple sclerosis (pwSPMS) in Italy and Germany. In previous project actions, six resources were outlined, meeting the needs prioritized by pwSPMS. This study aims to achieve multiple-stakeholder consensus on the most suitable resource and to refine the consensus resource. Two nominal group technique (NGT) meetings were held, one in Milan and one in Hamburg. Participants were pwSPMS (five in Italy/six in Germany), pwSPMS significant others (SOs, four/five), healthcare professionals (HPs, seven/four), and health service researchers/patient and citizen organizations representatives (HPCORs, five/five). Two of the four resources discussed in each meeting were the same in Italy and Germany: "Promoting the engagement of pwSPMS: a program for the patients and the HPs" and "Enriched physiotherapy program for pwSPMS." The other two were "A personalized care plan for pwSPMS" and "Roadmap for social and economic benefits" in Italy and "Metacognitive and everyday life training for pwSPMS" and "Psychological support for pwSPMS" in Germany. Each meeting consisted of two plenary sessions and a parallel group session (four stakeholder groups: pwSPMS, SOs, HPs, and HPCORs) in between. Meetings' narratives were analyzed thematically. The two meetings were rich in participation and discussion. In Italy, the consensus resource was "A personalized care plan for pwSPMS." Refinements included enrichment with pwSPMS engagement, inclusion of additional HPs, improved definition of the MS nurse's role within the interdisciplinary panel, and community care integration. In Germany, the consensus resource was "Psychological support for pwSPMS." Refinements included reshaping this resource into a more comprehensive and adaptive rehabilitation intervention and training the psychologist in recognizing client's rehabilitative needs and enhancing his/her autonomy. The NGT eased multiple-stakeholder deliberation and resource fine-tuning in both countries.
ManTra是一个混合方法的联合生产研究项目，旨在为意大利和德国新诊断为继发进展型多发性硬化症（pwSPMS）的患者开发一种干预措施（资源）。在之前的项目行动中，概述了六种资源，满足了pwSPMS患者优先考虑的需求。本研究旨在就最合适的资源达成多利益相关方共识，并完善该共识资源。举行了两次名义小组技术（NGT）会议，一次在米兰，一次在汉堡。参与者包括pwSPMS患者（意大利5名/德国6名）、pwSPMS患者的重要他人（SOs，意大利4名/德国5名）、医疗保健专业人员（HPs，意大利7名/德国4名）以及卫生服务研究人员/患者和公民组织代表（HPCORs，意大利5名/德国5名）。每次会议讨论的四种资源中有两种在意大利和德国是相同的：“促进pwSPMS患者的参与：针对患者和医疗保健专业人员的项目”以及“针对pwSPMS患者的强化物理治疗项目”。另外两种在意大利是“针对pwSPMS患者的个性化护理计划”和“社会和经济效益路线图”，在德国是“针对pwSPMS患者的元认知和日常生活训练”以及“针对pwSPMS患者的心理支持”。每次会议包括两次全体会议以及中间的一次平行小组会议（四个利益相关方小组：pwSPMS患者、SOs、HPs和HPCORs）。对会议记录进行了主题分析。这两次会议参与度高且讨论热烈。在意大利，共识资源是“针对pwSPMS患者的个性化护理计划”。完善内容包括增加pwSPMS患者的参与度、纳入更多医疗保健专业人员、改进跨学科小组中多发性硬化症护士角色的定义以及整合社区护理。在德国，共识资源是“针对pwSPMS患者 的心理支持”。完善内容包括将该资源重塑为更全面、适应性更强的康复干预措施，并对心理学家进行培训，使其能够识别患者的康复需求并增强其自主性。名义小组技术在两国都促进了多利益相关方的审议和资源微调。
