Construction of a User-Led Resource for People Transitioning to Secondary Progressive Multiple Sclerosis: Results of an International Nominal Group Study

Abstract

Background: 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. Aims: This study aims to achieve multiple-stakeholder consensus on the most suitable resource and to refine the consensus resource. Methods: 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. Results: 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. Giovannetti et al. Consensus on a Multiple Sclerosis Resource 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. Conclusions: The NGT eased multiple-stakeholder deliberation and resource fine-tuning in both countries.

Experiences of persons with multiple sclerosis with rehabilitation—a qualitative interview study

“…On the other hand, our study sample enabled us to gain insight into reasons for deciding against rehabilitation. However, the aspects that were discussed also cover the needs of pwMS in transition to or within a progressive phase [ 19 ]. Experiences of the six patients with SPMS did not differ qualitatively.…”

“…Persons with PPMS, major cognitive deficits and/or poor German language skills were excluded from the qualitative interview study. We decided to keep patients in our study who came out as having SPMS during the interview process, since SPMS follows an initial RRMS course and the uncertain period in the transition from RRMS to SPMS can lead to difficulties in reliable distinction between RRMS and SPMS [ 19 ]. Our questions then referred to their experiences when having RRMS.…”

Promoting participatory research in chronicity: The ESPRIMO biopsychosocial intervention for young adults with multiple sclerosis

“…With the aim to fill the literature gap on integrated intervention for MS, the ESPRIMO project (Explore, Support, and Promote Resilience In young adults with Multiple sclerOsis) started in 2019 offering a biopsychosocial approach (i.e., ESPRIMO intervention) for young adults with MS (YawMS) aimed at improving HRQoL ( Poli et al, 2021 ; Donisi et al, 2021a , b ). The project uses a co-creation approach, thus filling a further gap considering the limited experience with participatory approaches in the MS research field ( Giovannetti et al, 2020 ). The co-creation approach aimed at adjusting and modifying ESPRIMO’s theoretical framework ( Donisi et al, 2021a ), developed based on a literature review, and to inform the content and the modalities of the intervention based on the experience, preferences and needs of the main MS stakeholders.…”

A nurse-led, telephone-based patient support program for improving adherence in patients with relapsing-remitting multiple sclerosis using interferon beta-1a: Lessons from a consumer-based survey on adveva® PSP

“…Studies showed that supporting the patient in maintaining positive hope for the future allows him to feel more “empowered,” with positive effects on quality of life and adherence (Buja et al, 2021 ). Adherence is also significantly influenced by disease-related factors such as disability, illness duration, depression, and quality of life (Giovannetti et al, 2020 ). Psychological coping has proved to be crucially important for adjusting to the adaptive demands of chronic diseases, and in the last few years, it has received growing interest in MS (Keramat Kar et al, 2019 ).…”